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Public Statement in the Context of the Black Lives Matter Movement and COVID-19. This journal was published during the 2020 COVID-19 pandemic and the Black Lives Matter Movement. Shades of Noir (SoN) stands with the global Black Lives Matter movement (including Black Lives Matter UK ) to continue to do the ‘work’ to end systemic racist practices, systems, behaviours and ‘fight for freedom, liberation and justice’ for Black people, inclusive of the QTIBIPOC and all intersectional communities globally. The filmed execution of George Floyd on 29 May 2020 and those before and after all around the world, shared on social media are unacceptable acts of violence and cannot be left unanswered. The blatant inequality of the lives of Black people comes as no surprise. This is not a new situation although we recognise the current impacts rippling around the world. As demonstrations take place across the globe, building on the 2014/15 mobilisation of the movement, it reminds us of the many powerful and painful acts of resistance black people(s) have demonstrated as we continue to live, be educated and work in systems which reinforce the intersections of oppression. Despite the huge amount of pain and distrust from the black community however, there is strength and safety in numbers. We recognise, however, that this is not a time of celebration, as we too manage our pain, fears and anxieties. There is no doubt that we, as a global community, have been severely affected in the pandemic of racial inequality, experiencing continued and/or exacerbated trauma and the huge loss of life resulting from the ongoing COVID-19 pandemic and looming economic crisis. We recognise the complicity and inherent failure of institutions, organisations and individuals in acknowledging their colonial legacy and overt bias against Black people(s) who similarly remain disproportionately affected by the ongoing pandemic as ‘key workers’. We too call for an enquiry into British BAME Covid-19 death rate following the news that minority groups were over-represented by as much as 27% in the overall COVID-19 death toll, and that, 63% of the first 106 health and social care staff known to have died from the virus were of black or Asian descent (Health Service Journal, 2020). This points to a growing racial sentiment as Black key workers continue to be abused and devalued whilst working on the frontline. For too long, the emotional labour of black people(s) has been unduly expected and unfairly compensated in order to eliminate racism while ‘educating’ white people in the behaviours they themselves perpetuate.


It’s not enough to be simply not racist. We need to be anti-racist. Antiracism is an active word which means building policy and building a practice of opposing racism and promoting racial tolerance. We must build collective understanding and improve practice in antiracism through forging intersectional social justice (pedagogy). We must recognise the need for intergenerational discussion, criticism, a space to practice safely self-care and to articulate self-determination in order to liberate ourselves from the struggles of oppressive structures, both in education and society. We must build purposeful, broad-reaching and multifaceted interventions through the acknowledgement of what came before in the transformation and the evolution of institutional culture(s) across sectors. We will continue to support all individuals impacted by the ongoing pandemic and endeavour to mobilise as a community, building upon the work of our predecessors. We welcome contributors to promote coalition and express ‘non-optical’ allyship in supporting the Black Lives Matter Movement and ‘key workers’. Thank you to the Black Lives Matter, Black key workers, families and friends for your strength, honesty and continued commitment to ‘work’ through where we’ve been, where we are, and where we are going. United we stand. We Salute You! Copyright (c) 2020 Shades of Noir, all rights reserved


Content Disclaimer.

Please note that some of the content within our publications, including the Key Term sections are considered highly offensive to People of Colour (PoC) but we have included them to support difficult discussions around the subject of race and ethnicity to support understanding and evolve thinking with the aim of transformation.

Language/ Terminology.

Please note that some of the content within our publications, including the Key Term sections are considered highly offensive to People of Colour (PoC) but we have included them to support difficult discussions around the subject of race and ethnicity to support understanding and evolve thinking with the aim of transformation. Additionally, the terminology and use of language from the collaborators within this publication belong solely to those of each article’s author and do not necessarily represent the views or opinions of Shades of Noir. As such, any discrepancies found herein related to Key Terms and Micro Key Terms are not legally binding or enforceable and are open to interpretation and, in many cases, can be contested.

Special Thanks.

Shades of Noir would like to extend a special thank to the ToR Support Rayvenn Shaleigha D’Clark and Angie Illman as well as Editors Melodie Holliday and Aisha Richards for their contributions to this Terms of Reference Journal.

Mission Statement.

Shades of Noir undertake practice-based social justice within the creative sector context in partnership with international educational and cultural institutions, as well as creative practitioners and a broad spectrum of organisations. Our aim is to evolve behaviour, practice and cultural value to support a variety of audiences through a broad range of discursive and proactive interventions. We seek to engage and support individuals who make up the sectors through a combination of activities, commissions and resources. We centre the histories, voices and experiences of marginalised communities as a catalyst for transformation of people, processes and policies. This is all in support of our mission to: • Centre the voices, experience and perspectives of marginalised communities to evolve thinking • Create platforms to engage with intersectional experience, understanding and perspectives • Support knowledge exchange within a social justice pedagogical context • Transform behaviours through proactive interventions within a creative educational cannon • Build social justice communities of change-makers across sectors and countries


WITH THANKS TO. Special Thanks Academic Audio Transcriptions (AAT) Alliance for Inclusive Education (ALFIE) Anonymous Contributors Anti-Ableism Movement Birds of Paradise (BOP) Black British Visual Artists (BBVA) Dr Dieuwertje Dyi Huijg Heart n Soul at The Hub Krip Hop Community Lemon Art Rebirth Garments Royal Society for the encouragement of Arts, Manufactures and Commerce (FRSA) Sisters of Frida Triple Cripples Peer Reviewers: Jhinuk Sakar Robert Softley Gale INFO: W: shadesofnoir.org.uk E: info@shadesofnoir.org.uk Tw: @shadesofnoir Fb: shadesofnoir

Contributors: Shades of Noir Team Phase 5 Aisha Richards Angie Illman Ania Urbanowska Annabel Crowley Bea Webster Book Geek Chelle Destefano China Mills Claudette Davis-Bonnick Claudia Sin Dorota Chapko Eleanor Lisney Elora Kadir Evie Jeffreys Favour Jonathan Federico Martello Florence Low Gloria C. Swain Hamja Ahsan Hilary Wan Hope Cunningham Iga Sokolowska Imani Barbarin Jerron Herman Jhinuk Sarkar Jorge Aguilar Rojo Kalia Douglas-Micallef Kana Higashino Kay Barrett OUR SUPPORTER:

Kay Ulanday Barrett Kerima Çevik Kym Oliver Lani Parker Lemon Mingyue Wang Leroy Moore Maria Oshodi Melodie Holliday Merissa Hylton Michelle Daley Natalie E. Illum Olajumoke ‘Jay’ Abdullah Patricia Isabel Petersen Rayvenn Shaleigha D’Clark Rebekah Ubuntu Rotimi Akinsete Sabrina Mumtaz-Hasan Sandra Alland Serena Katt Shura Davey Sky Cubacub Syrus Marcus Ware Vilissa Thompson Zara Bain Zuleika Lebow Cover Illustration by Samia Malik Designed by Safiya Ahmed


CONTENTS. 09.

Welcome.

25.

Disability Calender.

29.

A Note From The Leads.

31.

Key Questions.

32.

Key Terms.


34.

Key Data.

45.

Peer Review.

57.

Creating Context.

77.

Expanding The Conversation.

260.

Robert Softley Gale & Jhinuk Sakar

Further Resources. Key terms, Further Reading, Digital Resources


TRIGGER WARNING Please note that some of the content within our publications, including the Key Term sections are considered highly offensive to People of Colour (PoC) but we have included them to support difficult discussions around the subject of race and ethnicity to support understanding and evolve thinking with the aim of transformation. This includes, but is not limited to, graphic visualisations, explicit descriptions and an extensive discussion of racial abuse, offensive language or the detailing of behaviours of assault, abuse, harassment, racism, sexism, homophobia or transphobia and misogynoir directly related to the experiences of marginalised communities.


WELCOME.

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DISABLED PEOPLE: THE VOICE OF MANY. How do we define disability? There are several models and theories that have attempted to define disability. These have evolved through frameworks such as the Eugenics Model, the Medical Model, the Charity Model, the Social Model and more recently the New Radical Model. To better understand the Social Model, however, we must understand the essential distinction it draws between impairment and disability; within this definition ‘impairment’ defines the individual features of body or mind, ‘disability’, on the other hand, describes the impact that the physical environment creates in exclusion, discrimination and oppression of the body (Sandal & Auslander, 2005). The Social Model was developed by people with disabilities in the 1970s and 1980s. Introduced in the United Kingdom as a reaction to the Medical Model, it remains the dominant framework in Anglo-American disability studies. However, it comes under three major areas of scrutiny in modern discourse; firstly, it does not account for the dual needs of people with learning disabilities in that it presupposes a solely outward imposition from wider society; secondly, it does not consider impairments that are directly linked to social circumstances such as (economic) poverty or malnutrition (Shakespeare, 2006); and finally, some have begun to highlight the failure of the model to account for the wider intersectionality within the experience of (disabled) people of colour. In this way, most disability studies do not account for the larger social experiences of individuals in the Global South (as defined by emerging transnational and postcolonial countries such as Africa, Asia and Latin America) to the broader socio-economic and political contrasts of the Global North (as defined by wealthier western or European countries such as the UK and America). Under this model, ‘Disability’ in its colloquial sense becomes a much broader category for those who are perceived to not fit into binary categories surrounding normative bodies and minds.

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“DISABILITY IS A POLITICAL CONSTRUCT, AND WE MUST ORGANISE INTERSECTIONALITY AGAINST SYSTEMS OF OPPRESSION; WE SHOULD BE CONCERNED NOT WITH DISABILITY RIGHTS, BUT WITH DISABILITY JUSTICE.” - New Radical Model.

DISABLED PEOPLE: THE VOICE OF MANY. // 11


So, whilst the Social Model demonstrates that people from different impairment groups face common problems - empowering them alongside their allies to find solutions to remove these barriers - how can we better centre the lens of intersectionality and critical race discourse with disability justice and activism? The intersection of race and disability remains a particularly neglected area. ‘...[the] social model of disability [and] its limitations are more severe than have been recognised [...]’ Samaha (2007) in What Good Is the Social Model of Disability?* The Lexicon of Ableism Ableism defines discrimination and prejudice against people with disabilities, or those who are perceived to have disabilities. As such, the Anti-Ableism movement strives to create strategies, theories, actions, and practices that challenge and counter ableism by those with disabilities (Simmons University, u.d.), such as systemic (educational) reform (Douglas-Micallef, u.d.). As a result, anti-ableism is now being used to highlight further: ‘[...] the experiences of disabled people of colour [that] has [been] masked [by] the processes by which whiteness and able-bodiedness have been privileged in these respective movements [;] centring the positionality of disabled people of colour demands, not an analogy, but intersectional analyses that illuminate how racism and ableism intertwine and interact to generate unique forms of inequality and resistance...’ Frederick and Shifrer, 2019 Similarly, language patterns within disability rights have also evolved in an attempt to quantify distance to and from the ‘norm’. As such, terms such as Crip and Mad are being reclaimed from the lexicon of ableism - though this is not universally accepted. To disempower the historically pejorative usage of such words, the emergence of inclusive disablist terminology as a form of ‘pride’ began during the rights movements of the 1960s and 70s. Located in Crip Theory (Sandahl, 2003), this can also be seen throughout popular social movements such as the #CripTheVote hashtag and artistic movements such as Krip Hop Nation (Moore) and the growing popularity of ‘Crip Pride’. Today ‘Crip’ or ‘Krip’ is considered by some to not only be an inclusive ‘insider’ term representing vastly divergent physical and psychological differences (avoiding hierarchy), but also a highly provocative identification within disability culture. Disabled theory and activism are maturing alongside alliances with feminist, queer and postcolonial studies which are entering a key period where the dominant social order is being disestablished (Campbell, 2009). In this respect, the Radical Model is, for some arguably, the next frontier in disability rights. Whilst it builds out from the political identity of the Social Model, it argues that we should not distinguish between impairment and disability. More fundamentally, this newer model shifts from a framework of ‘rights’ to ‘justice’, concerned with disability in the framework of social justice*. Within this framework, therefore, disability ‘is not a point of individual or social tragedy, but a natural and necessary part of human diversity’ (Withers, 2012).

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“[...] THE EXPERIENCES OF DISABLED PEOPLE OF COLOUR [THAT] HAS [BEEN] MASKED [BY] THE PROCESSES BY WHICH WHITENESS AND ABLE-BODIEDNESS HAVE BEEN PRIVILEGED IN THESE RESPECTIVE MOVEMENTS [;] CENTRING THE POSITIONALITY OF DISABLED PEOPLE OF COLOUR DEMANDS, NOT AN ANALOGY, BUT INTERSECTIONAL ANALYSES THAT ILLUMINATE HOW RACISM AND ABLEISM INTERTWINE AND INTERACT TO GENERATE UNIQUE FORMS OF INEQUALITY AND RESISTANCE...” - Frederick and Shifrer.

DISABLED PEOPLE: THE VOICE OF MANY. // 13


“[BECAUSE] IF THE DISABILITY MOVEMENT DOESN’T RECOGNISE AND PRIORITISE THE EXPERIENCE OF DISABLED PEOPLE WHO ARE ALSO LGBTQ+, WOMEN, PEOPLE OF COLOUR, WORKING-CLASS, REFUGEES AND ASYLUM SEEKERS AND SO ON, THEN IT IS NOT TRULY A MOVEMENT CONCERNED WITH JUSTICE. JUSTICE FOR ALL GROUPS, THEREFORE, IS BOUND UP IN THE SAME STRUGGLE....” - New Radical Model.

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Further, this framework holds intersectionality at its heart: ‘[because] if the disability movement doesn’t recognise and prioritise the experience of disabled people who are also LGBTQ+, women, people of colour, working-class, refugees and asylum seekers and so on, then it is not truly a movement concerned with justice. Justice for all groups, therefore, is bound up in the same struggle...’. There are presently a number of high profile disability collectives discussing and developing the model, through organising as well as online via blogging and social media forums. These include Sins Invalid, Cachín Cachán Cachunga, Sisters of Frida and the Disability Justice Collective. Please help us to begin this dialogue by considering the following questions: 1. How can we better centre the lens of intersectionality and critical race discourse with disability justice and activism? 2. How can we authentically highlight the experiences of disabled people of colour within mainstream disability culture? 3. Is Disability justice/rights and activism too white? 4. How are cultural and economic factors reinforcing disability, as well as impairments? 5. How can socio-economic values be subverted towards the inclusion of disabled people? 6. How can we better decolonise disability studies? 7. How can queer and critical race theory aid the dissolution of normative ideas surrounding the body? 8. What role does education play in the inclusivity of disabled people? 9. What is the role of the arts in disability studies and disability justice? 10. How can art alongside activism work together to empower disabled people? 11. How can disabled artists challenge and subvert the ableist gaze? 12. How does language reinforce stereotypes and ignorance towards the experiences of disabled people?

DISABLED PEOPLE: THE VOICE OF MANY. // 15


Topics for this ToR may include, but are not limited to: • Ableism versus Anti-Ableism

• Learning Disabilities

• Disabled Identity Politics

• Differences in terminology (selfidentification) and terming

• Disability Theory • Disability justice versus Disability Rights

• Colonial and Neo-Colonial Power infrastructures in Impairment and disability

• Lack of representation and narrative of disabled people in popular culture

• Alliances within feminist, queer and postcolonial studies

• The role of capitalism and consumerism and disability

• ‘Dismodernism’ (Davis, 2006)

• Impairment versus disability

• Inclusion and Separatism in modern discourse

• Normative gaze

• Gender-based Violence and prejudice

• Ableist and anti-ableist language

• Legislation and policy

• Global North/Global South Contrasts

• Neurodiverse descriptions and experiences

• Intersectional disabled Identities

• Neurodiversity Movements

• Duty of care in Learning Environments

• Disability within Intersectional Theory and Praxis.

• Global Models and Theories • Reflections on Trauma, healing and fear • Environmental exclusion, discrimination and institutional oppression

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• The portrayal of Disability in Film and media


Bibliography Campbell, F.K. (2009) Contours of Ableism: The Production of Disability and Abledness. London: Palgrave Macmillan

and Digital Sociology (eds.) Jessie Daniels, Karen Gregory and Tressie McMillan Cottom. Bristol: Policy Press, 2016. Available at https://ssrn.com/abstract=2747621

Campbell, F.K. (2008) Exploring internalized ableism using critical race theory. London: Routledge

How Dis/ability Research in Education Engages Intersectionality to Uncover the Multidimensional Construction of Dis/abled Experiences. Review of Research in Education, March 2018, Vol. 42, pp. 286–311, available from https://onlinelibrary. wiley.com/doi/pdf/10.1111/1467-9566.12199

Davis, L.J. (2002). Bending Over Backwards. Disability, Dismodernism and Other Difficult Positions. New York: New York University Press Goodley, D. (2010) Disability: Psyche, Culture and Society. London: Sage. Grech, S., Soldatic K. (2014) Introducing Disability and the Global South. Disability and the Global South (DGS) Meekosha, H (2011) Decolonising disability: thinking and acting globally, London: Routledge Mogk, M.E. (2014) Different Bodies: Essays on Disability in Film and Television, McFarland & Company, Incorporated Publishers Sandal, C., Auslander, P. (2005) Bodies in Commotion: Disability & Performance, Michigan: The University of Michigan Press Shakespeare, T. (2000) Help: Imagining Welfare, British Association of Social Workers Shakespeare, T. (2006) Disability Rights and Wrongs, Oxon: Routledge Swain, J., Finkelstein, V., French, S. and Oliver, M. (1993) Disabling Barriers – Enabling Environments. London: Sage. Drake Music. n.d. [online] Available at: <https://www.drakemusic.org/ blog/> [Accessed 26 May 2020]. McMillan Cottom, T. (2016) Black Cyberfeminism: Intersectionality, Institutions

Withers, A., 2012. Radical Model. [online] stillmyrevolution. Available at: <https:// stillmyrevolution.org/2012/01/01/radicalmodel/> [Accessed 26 May 2020]. Samaha, A (2007) “What Good Is the Social Model of Disability?” (University of Chicago Public Law & Legal Theory Working Paper No. 166, 2007). Frederick, A. and Shifrer, D. (2019) ‘Race and Disability: From Analogy to Intersectionality’, Sociology of Race and Ethnicity, 5(2), pp. 200–214 Berube, M, McRuer, R (2006). Crip Theory: Cultural Signs of Queerness and Disability. NYU Press. Fritschs, K (2013). On the Negative Possibility of Suffering: Adorno, Feminist Philosophy, and the Transfigured Crip To Come. Disability Studies Quarterly. 33 (4). Mann, B. (2018) Rhetoric of Online Disability Activism: #CripTheVote and Civic Participation. Communication, Culture and Critique. 11 (4): 604–621. Wolbring, G and Hutcheon, E (2013) ‘Cripping’ Resilience: Contributions from Disability Studies to Resilience Theory. M/C Journal. 16(5). Schalk, S (2013) Coming to Claim Crip: Disidentification with/in Disability Studies. Disability Studies Quarterly. 33 (2). DISABLED PEOPLE: THE VOICE OF MANY. // 17


LANGUAGE AND T E R M I N O LO GY Please note that some of the content within our publications, including the Key Term sections are considered highly offensive to People of Colour (PoC) but we have included them to support difficult discussions around the subject of race and ethnicity to support understanding and evolve thinking with the aim of transformation. Additionally, the terminology and use of language from the collaborators within this publication belong solely to those of each articleâ&#x20AC;&#x2122;s author and do not necessarily represent the views or opinions of Shades of Noir. As such, any discrepancies found herein related to Key Terms and Micro Key Terms are not legally binding or enforceable and are open to interpretation and, in many cases, can be contested. 18 // DISABLED PEOPLE: THE VOICE OF MANY.


THANK YOU LETTER TO BRITISH BLACK DISABLED WOMEN ACTIVISTS AND CAMPAIGNERS. MICHELLE DALEY.

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Michelle Daley is a proud black disabled woman. Born and raised in the East End of London to Jamaican parents that moved to England in the 1950s. I have worked in the disability field for over 15 years on international, national and local issues for public sector and voluntary organisations. She is the Co-chair of Independent Living Alternative and the chair of Reclaiming Our Future Alliance the International Committee. Michelle has her own personal website which is focused on the experience of Black Disabled people in Britain.

Michelle directs and manages ALLFIE, a Disabled people-led organisation, which seeks to build alliances with individuals and organisations who share their vision. They work with Disabled learners and parents and carers across a very wide range of educational needs, backgrounds and experiences and gain strength from that diversity. ALLFIE leads the lobby for change in inclusive education as the only Disabled people led national campaigning organisation working on this issue.

DISABLED PEOPLE: THE VOICE OF MANY. // 19


“UNDER-REPRESENTATION AND MARGINALISATION OF DISABLED PEOPLE WITHIN COMMUNITIES OF COLOUR: THERE CONTINUES TO BE A LACK OF WORK DONE FOR DISABLED PEOPLE OF COLOUR, WITH THIS GROUP LARGELY STILL MISSING FROM KEY POLICIES. AMONG WHAT ALREADY EXISTS, HOWEVER, IT IS INTERESTING TO NOTE THAT ONE OF THE MORE RECURRING ISSUES FACED BY DISABLED PEOPLE OF COLOUR IS A STIGMA WITHIN THEIR OWN COMMUNITIES INCLUDING FAMILIES (BLACK ABLEISM), WITH CULTURAL NORMS AS A SIGNIFICANT BARRIER TO YOUNG [DISABLED] PEOPLE REACHING THEIR FULL POTENTIAL” - Hall-Smith and Hassan, NUS (2017).

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Dear Sisters, I would like to assign this letter as an appreciation to our British Black Disabled Women and British Disabled Women of Colour activist and campaigners because I don’t think you get thanked enough.

“Ain’t I a Woman?” Thank you for empowering me to grow in my political consciousness, to understand the cause and effects of power and privilege action. You warned us about the effects of the ‘glass ceiling’ the barrier that keeps Black People and People of Colour from progressing but the situation is exasperated for Black Disabled Women and Disabled Women of Colour. And you also warned us against being manipulated, that often our invitation may be to fulfil a diversity exercise.

British Black Disabled Women and British Disabled Women of Colour have a right for their lives to be remembered. Their lives are no less important than other activist. In addition, I want to remember the lives of our sisters that died because they resisted and spoke out against the suffering, abuse, I now know the reason as to why injustice and inequality. I also want to it annoys me when I hear remember our sisters that died through the failure of institutions that are set up to protect “we cannot find Black Disabled People…” individuals from abuse and neglect. As in the case of Beverley Lewis who was found This is a lie! Because, according to Black dead at the age of 23. The inquiry report History Studies, Black People have been found that the London Borough of Newham living in Britian since 2nd century AD. So, Local Authority failed to support Beverley’s this is the reason why I say we should not mother who had mental support health needs forget that India, some African countries which led to Beverley’s premature death. and some Caribbean Islands were colonised and ruled by Britain up until the 1960’s. Thank you for being pioneers and Today some Caribbean islands still have phenomenal women in disrupting the not achieved their independence from societal and political paradigm to British ruling. For example, Monserrate bring about changes in the law and and people living in these islands are increasing opportunities for everyone. British citizens even though they live in other parts of the world. Therefore, You fought a tough fight which was not it’s simply ridiculous that the presence just about gender equality it was about the of British Black Disabled Women and multitude of oppression experienced by Black British Disabled Women of Colour remain Disabled Women and Disabled Women underrepresented or ignored from our history. of Colour. You showed us the importance of acknowledgment, self-love and also not Your experience has proven even today to overlook our different intersections so when we speak out about our situation it that they become invisible and also not is interpreted as revenge and a demand to let others determine our possibilities. for retribution. This is a false notion You told the world that we are not ‘less because literature shows that your of a woman’ and that our existence is not struggle and fight was never selfish or disposable and unvalued. This is exactly egoistic but for equality for everyone. the point our sister Sojourner Truth from across the Atlantic asked at a conference

DISABLED PEOPLE: THE VOICE OF MANY. // 21


You created a great platform for us but we now need to transform the discourse so that we are not written out of history, considered as invisible and underrepresented in all areas of life. You also remind us that women’s existence should not be relegated to only one day of the year. It is for this reason why I have identified the following British Black Disabled Women and British Disabled Women of Colour to showcase the contributions they made to equality but also making your dreams our possibilities and our reality. Past activist and campaigners:

Nasa Begum was a qualified social worker, produced a number of publications and work on the needs of Disabled refugees and asylum seekers. She co-wrote the book Reflections with Milliedrette Hill (Begum, N, Hill, M and Stevens, A, 1994). Milliedrette Hill was a student barrister, freelance writer and an advocate on race and disability. She co-founded Black Disabled People Association and actively spoke out about the experience of Black Disabled People. She co-wrote the book Reflections with Nasa Begum and Andy Stevens (Begum, N, Hill, M and Stevens, A, 1994).

Menghi Mulchandani was the Chief Executive of Action Disability Kensington and Chelsea for 13 years. She was the first Disabled Person and Woman of Colour to be appointed to lead the organisation. So far she remains the first Disabled Women of Colour to have served as a Chair of the National Centre for Independent Living.

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Mary Price was born in Barbados and was brought to London in the 1820s by her owners, the Woods. She was the first women to present anti-slavery petition to Parliament for Enslaved African People to gain freedom from slavery. Barbara Stewart was a poet and community activist. She was also known for her work on disability hate crime. Present activist and campaigners: Julie Jaye Charles the founder and head of the Equalities National Council organisation advocating on Black Disabled People’s issues. She has contributed to a number of publications on the issues effecting Black Disabled People in Britain. Eleanor Lisney is a cofounder of Sisters of Frida, British Council Disability Advisory Panel and the web team of the International Network of Disabled Women. She was the driving force for making the Million Women Rise accessible. 2010 was the first year that a platform lift was provided to assist Disabled Women to access the stage on which Eleanor and I spoke on. She has worked tirelessly with the organisers of the London Women of the World event to ensure Disabled Women have a presence on the panels. Caroline Nelson has been the Chief Executive of Choice in Hackney for over 10 years. The organisation provides advocacy services for local Disabled People. She remains one of the few British Black Disabled Women to head a Disabled People’s Organisation in London.


Saadia Neilson in 1990s she moved from Morocco to live in England. She is an international trainer on disability issues and human rights. Saadia took part in a number of protests including the ITV Telethon. She worked closely with Milliedrette Hill and also campaigns on other intersectional issues effecting Disabled People. Sarifa Patel a community activist and campaigner. She runs the London Borough of Newham Disabled Reps Forum and campaigns against segregated education. Angela Smith actively campaigns on independent living issues and is a committee member of Race Equality Foundation. She also contributed her story to Reflections book (Begum, N, Hill, M and Stevens, A, 1994).

Please use the following link in which Michelle Daily provides a comprehensive resource library based on British Black Disabled People from a political perspective due to the lack of documented information available. www.daleymichelle.co.uk/resources/ Reference for Reflections Book Begum, N, Hill, M and Stevens, A (1994). Reflections. The views of Black Disabled People on their Lives and Community Care. Central Council for Education and Training in Social Work. London

Deborah Williams is a performer, writer, producer and director. She is known for her contribution in the implementation of the Disability Discrimination Act in the cultural sector. I believe that there is so much we can continue to learn from the past and crossgenerational activism. I encourage you to share their stories and think about how we can deepen and extend their work but also engage young Black Disabled Women and Disabled Women of Colour in activism because they are the future. Respect and One Love Thank you!

DISABLED PEOPLE: THE VOICE OF MANY. // 23


“CREATING DIVERSE AND INCLUSIVE WORKPLACES FOR PEOPLE WITH DISABILITIES ALLOWS US TO RECOGNISE AND SUPPORT ORGANISATIONS THAT HELP BRING AWARENESS TO A WIDE VARIETY OF ANNUAL HEALTH, DISABILITY AWARENESS AND INCLUSION CAMPAIGNS. AS A RESULT, TO HELP GUIDE COMMUNITY ORGANISATIONS PROVIDING SERVICES TO PEOPLE WITH DISABILITIES AND THE EMPLOYERS HIRING THOSE INDIVIDUALS, DISABILITY SOLUTIONS HAS ASSEMBLED A LIST OF ANNUAL DAYS AND MONTHS FOR THE 2020 CALENDAR YEAR THAT PROMOTES AWARENESS AND INCLUSION FOR THE DISABILITY COMMUNITY.” - Disability Talent.

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DISABILITY CALENDAR. Disability Talent. Disability Solutions works with employers to help strengthen their workforce through diversity and inclusion. They partner with top companies to deliver people and business driven outcomes by developing recruiting and engagement strategies for the disability community - delivering custom solutions in outreach, recruiting, talent management, retention and compliance. To learn more about Disability Talent, visit: www.disabilitytalent.org/ 1 January

Birth Defects Prevention Month​​ Glaucoma Awareness Month Thyroid Awareness Month

4 January

World Braille Day

27 January

World Leprosy Day

1 February

American Heart Month​​ Black History Month Low Vision Awareness Month National Cancer Prevention Month

4 February

World Cancer Day

9 February

Congenital Heart Disease (CHD) Awareness Week

23 February

National Eating Disorders Awareness Week

29 February

Rare Disease Day

1 March

Bleeding Disorder Awareness Month Brain Injury Awareness Month Developmental Disabilities Month Multiple Sclerosis (MS) Awareness Month National Women’s History Month World wheelchair day

18 - 24 March

Sign language week

DISABLED PEOPLE: THE VOICE OF MANY. // 25


21 March

World down syndrome day

26 March

Purple Day for Epilepsy

30 March

World Bipolar Day

1 April

Limb Loss Awareness Month Stress Awareness Month

2 April

World Autism Awareness Day​

7 April

World health day

11 April

Parkinson’s Disease International Awareness Day

1 May

ALS Awareness Month​​ Borderline Personality Disorder Awareness Month Cystic Fibrosis Awareness Month​​ Lyme Disease Awareness Month Stroke Awareness Month Williams Syndrome Month

5 May

World Asthma Day

6 - 12 May

Deaf awareness week

10 - 16 May

Women’s Health Week

12 May

International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)

13 - 19 May

Mental Health awareness week

21 May

Global Accessibility Awareness Day

1 June

Cataract Awareness Month​​ Headaches Awareness Month Men’s Health Month

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7 June

National Cancer Survivors Day

17 - 23 June

Learning disability week

27 June

U.S. National Post Traumatic Stress Disorder (PTSD) Day

1 July

Disability Pride Month (NY)​

14 July

Disability awareness day

28 July

World Hepatitis Day

1 September

Deaf Awareness Month Leukemia & Lymphoma Awareness Month MDA National Muscular Dystrophy Awareness Month National Service Dog Month​​ Ovarian Cancer Awareness Month​​ Prostate Cancer Awareness Month Sickle Cell Awareness Month Spinal Cord Injury Awareness Month World Suicide Prevention Month

15 September

World Lymphoma Awareness Day

21 September

World Alzheimer’s day

23 September

International day of sign languages

29 September

World Heart Day World Deaf Day

1 October

Breast Cancer Awareness Month Down Syndrome Awareness Month Dwarfism Awareness Month Learning Disabilities Awareness Month LGBTQ History Month Spina Bifida and Hydrocephalus Month

1 - 7 October

Dyslexia Awareness Week

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4 - 10 October

Mental Health Awareness Week

6 October

World Cerebral Palsy Day

8 October

World Blind Day / World Sight Day

10 October

World Arthritis Day

1 November

Diabetes Awareness Month Epilepsy Awareness Month Lung Cancer Awareness Monthâ&#x20AC;&#x2039;â&#x20AC;&#x2039; Prostate Cancer Transgender Awareness Month

14 November

World Diabetes Day

21 November

Pancreatic Cancer Day

1 December

World AIDs Day

3 December

International day of persons with disabilities

10 December

Human Rights Day

To learn more about Disability Talent, visit: www.disabilitytalent.org/ 28 // DISABLED PEOPLE: THE VOICE OF MANY.


A NOTE FROM THE LEADS.

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To say that we are all different is fundamentally another way of saying we are the same. However, looking out into the world through this perspective collectively allows us to start to think about disability as something that is a part of everyone’s life within our society. Shades of Noir continually strives to achieve accessibility, always looking at new and intersectional ways to be more inclusive and accessible across our platforms. However, in order to do that, we all - as a team - need to understand not only who we are trying to be accessible for, but our motivations for doing so. This often takes us on a journey of learning and reinventing how we see ourselves within the institution as a collective of individuals. In this respect, one of the biggest challenges in building this document and supporting accessible content as a media developer undoubtedly feels to be the subjective nature of the terminology, language and the positionality that disabled practitioners choose to identify from. This was tricky for me to gauge not only due to the huge spectrum of neurodivergence/ neurodiversity has to be accounted for when we open up a conversation about disability, but as someone who does not identify as such, finding the right - or at least the most effective - way to allow the space for a variety of perspectives and self-identifications that we have been introduced to whilst building this document over the past few months. Due to the several models and theories that currently exist trying to define and navigate disability within Disability Rights Movement(s) developing over the last decade alone, alongside my own positionality as one of the leads of this publication, ultimately we decided to follow a different approach other than an academic one. Within this conversation - examining discourse emerging within the current socio-political environment - to us this felt to be the perfect moment to give voice to the experiences behind the theories; to the individuals who hold within them powerful testimonies of their experiences within this evolving conversation, in which their voice is the shade and light that creates the portrait of who we are not only as a community but as a society. Our contributors reflect on a variety of different experiences, interests and perspectives across intersections to allow audiences to contemplate how the term ‘disability’ has impacted upon their lives: from inaccessible architectural spaces, childhood tales of ‘deficit’ that dilutes personhood, artwork that showcases how blindness can be viewed as a tool for painting, reflections on the lifelong ‘sport’ of living with a disability, all the way to the way in which music helps to expose a relentless form of freedom within an individual. But, what binds them all, we had to ask ourselves? All are trying to connect and give voice to different understandings of ‘self’ and push us forward to a better, more inclusive understanding of our world. This ToR is the beginning of a new chapter for SoN - of striving to be more accessible and we are overjoyed that the thoughts of our collaborators within this publication can now be shared with you all Salute. Jorge Aguilar Rojo and Patricia Petersen.

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KEY QUESTIONS.

1. How can we better centre the lens of intersectionality and critical race discourse with disability justice and activism? 2. How can we authentically highlight the experiences of disabled people of colour within mainstream disability culture? 3. Is Disability justice/rights and activism too white? 4. How are cultural and economic factors reinforcing disability, as well as impairments? 5. How can socio-economic values be subverted towards the inclusion of disabled people? 6. How can we better decolonise disability studies? 7. How can queer and critical race theory aid the dissolution of normative ideas surrounding the body? 8. What role does education play in inclusivity of disabled people? 9. What is the role of the arts in disability studies and disability justice? 10. How can art alongside activism work together to empower disabled people? 11. How can disabled artists challenge and subvert the ableist gaze? 12. What are the roles of disabled people in performance art? 13. How does language reinforce stereotypes and ignorance towards the experiences of disabled people?

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AFRO-KRIP TERMINOLOGY.

Provided by Leroy F. Moore Jr., founder of Krip-Hop Nation. Leroy F. Moore Jr.

Leroy F. Moore Jr. is an African American writer, poet, community activist, and feminist and one of the founders of Krip Hop Nation (a movement that addresses ableism, or discrimination against disabled artists, esp. Black musicians marginalised because of racism AND ableism internationally) and the co-founder of Sins Invalid.

AfroKrip

Afo-Krip, as one cultural aspect of/under African Diaspora Culture with a focus on disability through activism, art, music etc. attempts to hold all these experiences into one term and to hand down to the next generation this theory of Afro-Krip and Krip-Hop and Krip politics to the media and political organisations. AfroKrip is a term Leroy Moore coined in 2016 to help united Afro disabled people around the African diaspora associate to Krip-Hop during and after becoming politicised. Afro-Krip at the highest level is a common political stage where the person is comfortable with their identity as a person with a disability and are throwing off the mainstream brainwashing of overcoming or hiding disability to also reach beyond themselves to others for community and discovery of history building on arts and struggles of our African disabled ancestors.

Black Ableism

Discrimination and social prejudice against Black people with disabilities or those who are perceived to have disabilities from Black non-disabled people. Unchallenged, Black Ableism holds the Black community from advancing. Black Ableism can only be eradicated by stripping what the Black community has been taught about disability through the lens of oppression and then rebuilding. This rebuilding process must be conducted by coordinated teams of Black disabled people and family members who have had a presence in both the disability and Black communities. This process will be a long term commitment to healing and the detailing the historical significance of disability to present day issues, including Black Ableism.

Crip Theory or Crip Culture (Disability Culture)

There is an overall emphasis within crip theory on coalition building. A reclamation of the term â&#x20AC;&#x2122;crippledâ&#x20AC;&#x2122;, crip theory advocates and educates through outlining how disability theory intersects with queer theory to analyse a widereaching, global critique of neoliberalism.Thus, crip theory works like queer theory, working not only to resist the (oppressive, suppressive) norm but also to enact progressive change. Subsequently, this is where cripping comes from.

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Krip

With this new term AfroKrip we need to know why the term Krip with a ‘K’ and its ugly history has been used. Leeroy Moore (founder of Krip-Hop) realised that international solidarity with terminology and history is tricky but disabled peoples can come close to a commonality and respecting differences when something that the so-called mainstream has been discarded with a fresh spotlight; thus Moore changed the ‘C’ to a ‘K’ in what we know today as Krip-Hop and now Afro-Krip.

‘Krip’ Hop

Krip-Hop is a global movement demonstrating alternate arrangements by which hip-hop artists with disabilities can communicate through social media, including educators, journalists and conferences. Created by Leeroy Moore the movement is about advocacy, education and overcoming oppression. For Moore the movement has sought to reclaim negative terms associated with the disabled using them to shock people into understanding and respecting the disabled African American community. It has over 300 members worldwide

The Dozens

‘The Dozens’, ‘snapping’, ‘cracking’, is the act of trading insults back and forth is a black oral tradition that dates back to slavery and has its roots embedded in both Mississippi and Louisiana. The term evolved to mean a competition between two people, typically men, in a contest of wit, mental agility, verbal ability and self control. It is believed that ‘The Dozens’ developed as an outlet for slaves’ depression and worked as a ‘valve of aggression for a depressed group.’

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KEY DATA.

Source: www.advance-he.ac.uk/knowledge-hub/equality-higher-education-statistical-report-2019 Equality in Higher Education Report, Student Statistical Report, 2019, UK Data. This data has been taken from the 2019 Advance HE, UK Student Statistical Report, 2019. It reveals that in 2019, across all degree levels of classification, there is a disclosure rate for disability status in only 14.4 per cent of students in (First degree) undergraduate courses, 10.6 per cent for â&#x20AC;&#x2DC;otherâ&#x20AC;&#x2122; styles of graduate courses, 9 per cent for Research-based postgraduate courses and only 9.3 per cent for taught postgraduate courses.


Source: www.advance-he.ac.uk/knowledge-hub/equality-higher-education-statistical-report-2019 Equality in higher education: Staff statistical report 2019 - UK data. This data has been taken from the 2019 Advance HE, UK Staff Statistical Report, 2019. It reveals that between 2006-2018 (which constitutes a 12 years span) that the proportion of staff disclosing a disability in 2017/18 has more than doubled since 2006/07 growing from 2.5 per cent to 5.1 per cent.


Source: www.advance-he.ac.uk/knowledge-hub/equality-higher-education-statistical-report-2019 Equality in higher education: students statistical report 2019. This data has been taken from the 2019 Advance HE, UK Student Statistical Report, 2019. It reveals that between 2006-2018 (which constitutes a 12 years span) that the proportion of students disclosing a disability in 2017/18 has risen from 7.2 per cent to 12.9 per cent which constitutes a 5.7 point increase in instances of self-disclosure.


Source: bethtraynor9.wixsite.com/being-me/disability Disability Statistics - WHO - the UK and Global Data. This data has been taken from the World Health Organisation (WHO) UK and Global Data and reveals a number of insights. For example, 1 in 7 people (globally experience a disability; 285 million people (globally) have a visual impairment; 39 million people (globally) as registered as blind - of which 2.2 million people in the UK have significant sight loss; 10-15 per cent of the population have dyslexia or learning difficulty - which 1 in every 300 people in the UK; and finally 774 million people in the world are illiterate (unable to read and/or write).


DIVERSITY QUESTIONS. Many individuals and institutions are now tasked with responding to different forms of diversity questions, which take into consideration some of the following elements: • • • • • • • • •

Student attainment differentials Student experience differentials Whitewashed curriculums Inclusive pedagogy History/history erasure Staff recruitment Staff progression Staff development Staff experience

In response to the above elements many individuals, departments, institutions and organisations contact Shades of Noir to advise, train and support. As such we have developed a series of questions that should help respond transparently, develop a better understanding and build strategies and policies responding to specific contexts for impactful and purposeful changes towards social justice environments.

Student attainment differentials

How do you collect this information? Have you disaggregated data by all protected characteristics? Have you collected intersectional data? Have you spoken to students and student union? Have you gained qualitative and quantitative data? Are staff with intersectional protected characteristics leading this work and are they remunerated for this?

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Student experience differentials

Who are the voices that you record, why and what happens with the voices and the people behind them? What processes are in place to anonymously record student experiences? How do you level the playing field for marginal communities of students? What are your processes with complaints and do complaints data reflect attainment data? How do you engage with and or embed departments that specialise in supporting vulnerable and or marginalised students? Are staff with intersectional protected characteristics leading this work and are they remunerated for this?

Whitewashed curriculums

Who are the authors of the publications that you promote and include within your resource lists? Do your resources include contributions from communities of intersectional protected characteristics? Where do you see social justice embedded in the curriculum? How do you manage misappropriation in the curriculum? How do critical intersectional race theories present themselves in the curriculum? Are staff with intersectional protected characteristics leading this work and are they remunerated for this?

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Inclusive pedagogy

What is the data of representation of intersectional protected characteristics within your team? Have you or your team actively engaged with contributions from communities of intersectional protected characteristics? How do you embed social justice teaching? Where does critical intersectional race theories present itself in your teaching approach? What actions do you take to ensure a supportive environment? Are staff with intersectional protected characteristics leading this work and are they remunerated for this?

Herstoy/history erasure

How and where is colonisation represented in the curriculum? What narratives and cannons are valued more? Where do you access history/herstory from? What archives do you use and or engage with? How do you check that your information is accurate, critical and international? Are staff with intersectional protected characteristics leading this work and are they remunerated for this?

Staff recruitment

What is the current and previous 3 to 5 years of data of your intersectional staff data? Where do you share your data? What strategies and or policies do you employ to reduce discrimination and both unconcious and concious bias? Where do you advertise vacancies to reach the full spectrum of society? What do you articulate and how do you deliver fair recruitment practices? Are staff with intersectional protected characteristics leading this work and are they remunerated for this?


Staff development

Do you collect data on staff development? Have you identified departments, communities and or individuals that either do or do not engage or are unable to access development? Do you have mandatory training for all staff to affirm the ethos of the institution? What are the staff development programmes that counter bullying, harassment and or discrinmination? Do you have a clear and transparent process articulating how staff development contributes to staff career progression? Are staff with intersectional protected characteristics leading this work and are they remunerated for this?

Staff experience

Who are the voices that you record, why and what happens with the voices and the people behind them? What processes are in place to anonymously record staff experiences? Do you collect data of staff experience? What do you do with the data collection to inform your strategies, policies and processes? How do you engage with and or embed departments that specialise in supporting vulnerable and or marginalised staff? Are staff with intersectional protected characteristics leading this work and are they remunerated for this?


SHADES OF NOIR’S STREAMS OF WORK. Shades of Noir’s ‘Streams of Work’ are broad-reaching and multifaceted, supporting the purposeful transformation of people, policy and process. As a community, we centre the voices and lived experiences of students and staff of colour within the focus of social justice. We offer accessible knowledge and visible testimonies that we hope will further inform the evolutions of cultures and practices across the sector (and beyond). For over a decade, the programme has reached huge success thanks to our intersectional team of award-winning staff and students. This allows us to shape our proactive interventions to be purposeful, relevant and effective. As creatives, we take an inherently intersectional and holistic approach, aligning everything that we deliver within the framework of policy, people and process. The following diagram contextualises some of our endeavours. Each line represents the intersection between activities and collective responsibilities, which support meaningful change towards anti-racism as a practice that requires neverending work.

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“ALL WE CAN EVER REALLY DO IS SHARE OUR STORIES – TELL PEOPLE ABOUT OUR EXPERIENCES OF THE WORLD IN WHICH WE LIVE WITH AS MUCH HUMANITY, HONESTY AND EMPATHY AS POSSIBLE. WE CAN NOT MAKE THE OUTSIDE WORLD SEE US IN A CERTAIN WAY – WE CAN’T FORCE THEM TO STOP DESEXUALISING OR FETISHISING US, TO STOP PATRONISING US, OR TO STOP OTHERING US. ALL WE CAN EVER DO (I TRULY BELIEVE) IS SHARE A LITTLE BIT OF OUR TRUTHS, WELCOME ‘OTHERS’ INTO OUR WORLD AND INVITE THEM TO LOOK AROUND FOR A WHILE.” - Robert Softley Gale. 44 // DISABLED PEOPLE: THE VOICE OF MANY.


PEER REVIEW.

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Shades of Noir was delighted to invite Jhinuk Sarkar and Robert Softley Gale to peer review this Terms of Reference.

Jhinuk Sarkar Jhinuk worked as a Disability Adviser at UAL, and before that as a programme coordinator at Shape Arts (a disability arts organisation focusing on supporting visual and performing arts made by disabled artists). During her work at Shape, Jhinuk gained experience of supporting high profile disabled artists and disability-led arts organisations, delivering commissions for the London 2012 Cultural Olympiad.

Robert Softley Gale Birds of Paradise is an accessible arts company that produces world-class productions and projects. It places disabled artists centre stage and develops future generations of disabled artists. The company also offers training and consultancy in disability arts. - www.boptheatre.co.uk/

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A NOTE FROM JHINUK SAKAR. Jhinuk worked as a Disability Adviser at UAL, and before that as a programme coordinator at Shape Arts (a disability arts organisation focusing on supporting visual and performing arts made by disabled artists). During her work at Shape, Jhinuk gained experience of supporting high profile disabled artists and disability-led arts organisations, delivering commissions for the London 2012 Cultural Olympiad. The commissions were offered through a programme and festival called Unlimited, which carries on today (www. weareunlimited.org.uk). Unlimited and Shape gave Jhinuk awareness of disability issues in various capacities and social justice. Shape provided her with experience of assisting with disability equality training in Brazil in anticipation of the following Cultural Olympiad in 2016. Her work at Shape was always in partnership with other disability-led creative organisations such as Heart n Soul, Candoco, Pallant House Gallery, DaDaFest, Graeae Theatre, Drake Music and more. Jhinuk currently continues her practice as an Illustrator, teaching Illustration in higher education and teaching on the Inclusive teaching & learning unit of UAL’s PG Cert course. She is also part of UAL’s Academic Study Support team. She works at House of Illustration as part of the freelance education team to deliver workshops for families, and schools including Deaf schools. Jhinuk is also Head of Community & Accessibility at Turf Projects, where she advises on access for Turf ’s programmes and supports learning disabled artists in an arts collective called MOSS. turf-projects.com/moss/ cargocollective.com/paperfig

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When I was asked to write this Peer Review, I was panicked a little, in all honesty. I’ve worked in Disability Arts, with disabled artists and disability-led arts organisations for a few years now and whilst I have knowledge of barriers to education and the Arts in particular from this work, I am always, always, always learning. That won’t end. I have not long known formally about my own diagnosis of Dyslexia, and I still struggle with knowing where I place that within my work. How do I present my period of undiagnosed study experiences to others, conscious of my neurodiversity not being seen as ‘an excuse’ for poor writing? I fear writing, I feared this request. I heard my mind racing with a run of questions: ‘Do I have enough expertise?’ ‘I am not sure I have notable lived experiences like other disabled artists I’ve worked with.’ ‘How can I justify my position within the valuable collection of voices and texts in this Terms of Reference (ToR) publication?’ I hope what I am going to say will be enough. I definitely think what I am about to say should be notable. My review starts with my own experiences. I don’t consider myself as a natural Academic, yet I began teaching recently amongst peers who have worked in academia for years and have found their confidence to do so by finding routes in, much earlier than me. Whether those people were non-disabled, disabled, white, or


Image 6 a person of colour, younger, older, non-binary, female or male, they navigated the system earlier than I did, and had to do so by jumping through ableist, white, middle-class frameworks that are often the default experience. I’m glad I came to teaching later in life because otherwise, I wouldn’t know about Disability Arts. I tell you I am not a natural academic not to devalue my teaching ability, but so that you know that here, in this peer review, it has to be straight-talking. I want my review to be accessible as I would find it accessible for me to read. I may use a reference here and there, but it is placed mainly through experience-based knowledge. I think through making, doing and listening. It was painful, cathartic, rage-inducing, exciting and a whole range of other feelings to experience the submissions in this publication. Whilst I see the struggles and breakthroughs explained, I also see the fight.

Overall I see this journal as a powerful call to action which I will explain further. As Maria Oshadi explains in her interview in this journal, we need less abstract awareness born from reading, and seek to create more action: ‘… in some ways, things were much more innocent 20 years ago. Now there’s more awareness, but I feel the danger is that this level of awareness can be theoretical and some people don’t see their own collusion with racism, ableism and classism (Oshadi, 2019). Drawing comparisons of social justice between race and disability and the not so ‘new’ inbetweens. I have heard and even seen the prejudice people experience from disclosing their disability. But when I started working at Shape, I began to understand an experience of prejudice that I was unfortunately all too familiar with - racism. When it comes to racism, sexism and ageism I believe there is unequivocally no excuse, and unbelievably, we are globally, and as humans, still travelling on a path of understanding that fully. DISABLED PEOPLE: THE VOICE OF MANY. // 47


I think I only came to understand more deeply that the same injustice applied with ableism and attitudes towards disability when I started working at Shape. This realisation came from working closely with disabled artists who shared similar experiences impacts upon their confidence as a result of facing barriers relentlessly. Removing barriers to these discriminations is where the Equality Act (2010) is meant to uphold some of these basic human rights for people living in the UK. In an extremely potted history, the Act (established as late as 2010) is a progression from the 1995 Disability Discrimination Act which was formed in the UK as a result of the Disability Rights movement Direct Action Network (DAN). DAN formed and was in action during the 1980s and 90s. This law has taken steps towards a more inclusive outlook by combining the nine personal characteristics that cause us to be victims of discrimination into the Equality Act we know today. Although this is progressive, I think there is plenty more room for development. This journal reveals the room for improvement – it exposes the gaps and nuances we need to recognise more openly. We want the intersections addressed. Just as the submission from Eleanor Lisney of SISTERS OF FRIDA so aptly provokes readers to challenge within themselves in ‘when gender, race and disability collide’ (Lisney, u.d.). We need to reframe the hidden elements that cannot stay hidden forever. Socio-economical, hidden impairments and further development on the Mental Health Act needs to be actioned immediately - our world has moved on a lot from its birth in 1983. I strongly believe the Act needs to explicitly include areas of our lives such as a duty of care with regards to social media use and cyberbullying, both of which were non-existent in the 80’s.

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Entering conferences with invisible impairments and invisible racism: Although our world has moved on in terms of technology and accessibility, our attitudes need an almighty thrust forward to catch up. I recently presented at a conference addressing mental health combined with creativity. Myself and co-presenter were two of 3 visible people of colour that I recall being at the conference (that’s including participants). It caused me to feel a low level of anxiety. A series of unnerving experiences at the conference helped that familiar gaslighting feeling to ensue, and I came away wondering if I had it all wrong. Maybe people of colour didn’t experience long-term mental health conditions, and only white people do? But maybe not, otherwise, resources such as Black Minds Matter and articles such as Merissa Hylton’s ‘Mental Health & Disability in the Arts’ in this journal, would not exist. Who and what is more marginalised? I don’t think we should ask this question, but yet it feels like that is what ableism asks people to decide an answer for. This is a complex problem to unpick, but I think this is amazingly unpicked in this publication. Kerima Cevik’s article exposing the erasure of blacks from histories of autism is one of many examples to read on this. It’s honest, insightful and rich in perspectives to allow the reader a broader view on disability. We can be made to feel marginalised in many ways, we don’t have to pick which one feels the most painful or important, they are entwined. Closing the Gap - Accessible Resources We can never stop learning about accessibility and disability within the framework of inequality because as long as the world keeps changing as rapidly as it has in my lifetime history is documented in skewed perspectives. A prime example is the two current affairs of the world at the point of the production of this journal:


1. The COVID-19 pandemic The coronavirus has highlighted how unprepared we are in our structures on so many levels. But as soon as the economy was affected, guess who was one of the first demographics of people to take cuts, a hit on personal income, access to vital facilities, and generally have a reduced quality of life? Disabled artists. As a response and call to action the ‘#WeShallNotBeRemoved’ UK Disability Arts Alliance was formed by UK disabled artists and cultural leaders seeking recognition of this hit and began with an Open Letter to the Secretary of State for Culture to support disabled artists during and after COVID-19. 2. George Floyd’s murder and Black Lives Matter movement Further unpreparedness that our ableist society needs to work on is access to resources. In the devastating and stark reality of police brutality in the US and racism costing lives highlighted by the murder of George Floyd, where are the structures to fund accessible resources supporting education on this? As a result of the news of George Floyd and Black Lives Matter, the floodgates opened of sharing anti-racist resources on social media. Though extremely important that the sharing began, at times it is overwhelming for many, including myself. In absorbing and sharing as many resources as I could, it revealed to me that there was a sheer lack of accessible materials available to explain what was going on. I found one easy-read document developed by a freelance practitioner (who was unpaid for developing it but did it out of need because they were supporting a black learning disabled person). They created this resource out of necessity on their own time, and made it an open resource, made it honestly up for review, and asked for help (French, 2020). I believe this is a good model of practice, to be honest and open in supporting disabled creatives, and asking for help to understand user experiences.

Why should anyone assume they know what is best for disabled people, especially if you are non-disabled. Why not just ask? Provocation in this journal and Disability in the future ‘The 1980s and 1990s were a thrilling time in terms of disability activism and saw so much change, but I think over the past couple of decades we’ve lost momentum’ (2018, Lisicki) Please drink in the incredible work in this journal that’s here to bring us up to date. Value the sharing of these experiences, the thoughts and intersections surrounding Disability portrayed in this journal. Let’s pick up the momentum again. The Shades of Noir team have given you a huge helping hand with this Terms of Reference. These are now, more than ever (especially in the current climates documented above), important to be heard and acted upon. Do not be fearful of failure so much that you do not act. Act. Ask. Actively listen. Act more. And repeat. We learn so much from our failures if we let ourselves. It takes courage and tiresome efforts to embrace these failures and use them as part of your journey, but it is worthy work. Please don’t take my plea to act as an instruction to carry out actions aggressively. An action can be performed in varied ways. You can be quietly revolutionary. You can be a Shy Radical (Ahsan, 2017). You can create online blogs such as PhDisabled (featured in this journal) to instigate gatherings of new communities that need mutual support. You can act by listening. Active listening is always necessary because it creates empathy, not pity. I agree to ‘Piss on Pity’ (Disability Arts Movement DAN,1992).

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Image 7 I disagree with sitting back and let this wash over you. Everyone can do something to improve inclusivity and consider access in all they do. You know what is accessible to you, you know what barriers you’ve experienced, still experience, and may yet experience. Everyone can feel disabled at some point (Timlin and Rysenbury, 2010). There are still many challenging spaces to navigate around accessibility where we would hope they would feel safe. There are still barriers to allowing disabilities to be visible and just be, as part of the fabric of humans, without a motive to be ‘inspirational’ or seen as angry, as explained so honestly in Elora Kadir’s account in this journal. Our attempts to bring the world into balance are not easy, it can be exhausting, disappointing, nerve-wracking, exciting, and hopeful. But I hope you’ll agree with me, that it feels the right way to act.

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Alongside this need for balance, please take time to digest and practice self-care whilst reading this Terms of Reference. I’ll leave you with three thoughts from my own experience with Disability to process: 1. On a fun note: Please search for my ‘P45 performance’ on disabled sculptor Tony Heaton’s website, where I ‘bonded’ with his artwork ‘Shaken not Stirred’ (a piece originally created for the 1992 Block Telethon protests as part of the Disability Arts Movement). ‘P45 Performance’: www.tonyheaton. co.uk/mixed-media-film.html#m-7


Image 8 2. On overcoming anxiety: To write this peer review took more anxious energy than I usually require, especially compared tasks that don’t need much original writing. The way I have found myself overcoming this is simply to give myself time. I start drafting earlier and created it in many stages, I let texts ‘breathe’. I benefit so much by leaving my written work alone to forget about it before reviewing it again (easy for me to do with my short-term memory). Time in reality, is not always on my side, so I often find myself working hard, long hours to get texts ‘right’, but it is always worth it. Something else works to overcome anxiety for me, and that’s to be brave enough to share my written work with people I trust. I look back to my pre-diagnosed days and see that I did this anyway: checking my CVs and applications with my sister and my best friends.

But I always feared sharing with work colleagues, until this review, where the Shades team were patient and showed me they understood how I write and valued it (so much so that they advised me to write about this strategy here). Having that support feels different from not feeling good enough, it feels like I’m learning how to better articulate myself in writing, and that’s incredibly positive. I don’t think I will ever fully enjoy writing, but I know the purpose of it is important to communicate powerful messages such as those in this Terms of Reference – and I want to be a part of that. These mixed emotions I can feel after the anxiety has faded can be summarised in this embroidery of a Bengali proverb (stitched by my mum, aged 8). It reads: ‘The endless desire which I have in my small heart has not, is not, and will not be satisfied….ever’ And finally

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3. On investing in opportunities: I see every option to learn new ways to create in my practice and be more inclusive as an opportunity. Accessibility of any information can always be improved. I reflected upon that recently in a piece of work where I painted on a window, using collective nouns to consider creative processes. I drew and painted on both sides of the window, to signify that there are often hidden processes: Laughter, fun, self-care and care for others through listening. These all allow us to thrive in what we do. I hope that after reading this journal, what you do in your everyday sees you passionately endeavouring to integrate removing barriers for disabled people.

Bibliography: Black Minds Matter. Available from: https://www.blackmindsmatteruk. com/ [Last accessed 18/6/2020] George Floyd & Black Lives Matter – Accessible Summary. Available from: https:// www.jade-french.com/news/george-floyd-andblack-lives-matter-accessible-summary-draft-1 (French, 2020) [Last accessed 18/6/2020] Design for dementia - Royal College of Art’s Helen Hamlyn Centre. Avilable from https://www.rca.ac.uk/research-innovation/ research-centres/helen-hamlyn-centre/ research-projects/2010-projects/designdementia/ [Last accessed 18/6/2020] Piss on pity: How a new archive captures the radical spirit of the Disability Arts Movement. Available from: https://www.independent. co.uk/arts-entertainment/art/features/disabilityarts-movement-national-collection-archivebarbara-lisicki-tony-heaton-a8416036.html (Welsh, 2018) [Last accessed 18/6/2020]

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‘Shaken Not Stirred’ and ‘P45 performance’ by Tony Heaton. Available from: http://www. tonyheaton.co.uk/mixed-media-film.html#m-7 Shape Arts. Available from: https://www. shapearts.org.uk/ [Last accessed 18/6/2020] Shy Radicals: The Anti-Systemic Politics of the Introvert Militant (Ahsan,H. 2017) To define or not define: the dirty ‘disability’ word. Available from: https://www.disabilityartsonline.org.uk/ editorial-blog?item=2338 (Hambrook, 2014) [Last accessed 18/6/2020] UK Disability Arts Alliance ‘We Shall Not Be Removed’ responds to the current crisis https://disabilityarts.online/magazine/ news/uk-disability-arts-alliance-we-shallnot-be-removed-responds-to-the-currentcrisis/ [Last accessed 18/6/2020] Unlimited disability arts commissioning programme. Available from: https://weareunlimited.org. uk/ [Last accessed 18/6/2020] We Shall Not Be Removed. Available from: https://www.weshallnotberemoved. com/ [Last accessed 18/6/2020] When disabled people took to the streets to change the law (Rose, D. 2015) [Last accessed 24th June 2020]. Available from https:// www.bbc.co.uk/news/disability-34732084


A NOTE FROM BIRDS OF PARADISE. Robert is recognised as a key player in the disability arts scene in the UK and on the world stage and his presence gives an authority to Birds of Paradise’s status as Scotland’s premier disability-led theatre company. With over ten years of experience in diverse roles including disability rights activist, actor and performer, writer, artistic director and advocate of equality of access to the arts for disabled people, Robert has appeared in many productions and has developed his own artistic practice – including instigating, co-writing and performing in ‘Girl X’ for the National Theatre of Scotland, directed by Pol Heyvaert of Belgium’s Campo. His award-winning writing debut and solo performance – ‘If These Spasms Could Speak’ – was a hit of the 2013 Made in Scotland programme and has subsequently toured internationally to countries including Brazil and India. Robert joined Birds of Paradise as Artistic Director in November 2012. Birds of Paradise Theatre was formally constituted as a company in 1993, becoming Scotland’s first touring theatre company employing disabled and non-disabled actors. Since then they have been led by a number of visionary leaders and in 2012 became disability-led through the appointment of several disabled Artistic Directors.

My first reaction to reading the incredible articles that exist within this publication is to notice the gulf that exists between disability as it is understood by much of western society and how we as disabled people are trying to define it in relation to our experiences. Simplistic narratives prevail. I am writing this amidst an international lockdown, wherein disabled people are acutely politically vulnerable and pathologically at risk. I find it difficult from this perspective to see how we bridge such a divide – while we are all debating our models of impairment and disability and trying to push our thinking forward, the wider population (in my experience) are still viewing us as at best vulnerable and more often than not disposable and irrelevant – the last to get access to ventilators and medical assistance at a time of crisis. This isn’t meant as the hopeless downer that it might first appear to be – I’m really trying to widen the angle of my lens. What is the role that we can play now, in 2020, in the hope of widening inclusion and access within society? My intention was to give a professional response to the articles I encountered in this publication, but they have touched me on a much more personal level than such a response would allow me to do justice to. So I’ll respond to them in professional and personal terms. All we can ever really do is share our stories – tell people about our experiences of the world in which we live with as much humanity, honesty and empathy as possible. We can not make the DISABLED PEOPLE: THE VOICE OF MANY. // 53


Image 9 outside world see us in a certain way – we can’t force them to stop desexualising or fetishising us, to stop patronising us, or to stop othering us. All we can ever do (I truly believe) is share a little bit of our truths, welcome ‘others’ into our world and invite them to look around for a while. I also recognise that I am at the softer end of the spectrum – I am still focused on engaging with people and making them laugh. I was once accused of being an ‘Uncle Tom’ – a person regarded as betraying their cultural or social allegiance – which I dispute wholeheartedly. I fully recognise the need for anger and protest, the need to provoke and challenge and at different points in my life and career I have used those tactics. However to me – in the context I find myself in today – I feel we need to make our stories engaging and accessible to the world; we need to give others good reasons to want to hear about our lives and to know who we are. This isn’t about diluting our politics or protecting our audience from 54 // DISABLED PEOPLE: THE VOICE OF MANY.

any harsh realities, it is about recognising our role in extending an attractive invitation. All of this is a long-winded way of justifying why I work in theatre and why I make the kind of work that I do. There’s always a tension for me when I’m thinking about the audience for the work that I make – am I trying to educate, inform, entertain non-disabled audiences, to show them new narratives that will make them think about the world differently? Or am I trying to do the same for disabled audiences (and their allies) while also giving them stories to identify with – a way of seeing their experiences writ-large? Inevitably I am trying to do both, which I think this publication also does incredibly well. What I get from reading these articles, poems, responses and so on is the sense of a maturing disabled narrative. For a long time, there was a perceived pressure on disabled people to present their experiences in a certain way – the Social


Model was seen as the answer to all woes and any deviation from it was to betray your tribe. But within these stories I have read about suffering (because we do indeed suffer) as well as achieving (we do indeed achieve), about shame (a universal human emotion) as well as pride. As a movement it now feels as though disability culture has developed to the point that we can hold contradictions and complexities, which is surely a good thing. Whether the non-disabled world can deal with such complexities is another question and a difficult one for us to answer right now. A personal moment of growth in my disabled identity came while reading Eli Clare’s ‘Brilliant Imperfection: Grappling with Cure’ (Duke University Press Books (3 Feb. 2017)). Recommended to me by the amazing disabled choreographer Claire Cunningham, Clare’s book spoke to my experience of the inner turmoils that living with an impairment can bring. These personal battles and challenges are something that I learnt from an early age to hide from the world around us, even/especially from our own families. My reasons for hiding them were complex but included the sense that non-disabled others couldn’t and/or wouldn’t understand, and so it was down to me to carry these ‘burdens’ and to face these challenges alone. It was only in meeting other disabled artists that I felt I had found my people and suddenly a sense of the ‘common fight’ became tangible to me.

I believe our challenge going forward is to keep articulating our experiences in ways that the wider society can fully engage with. While we can all see the intersectional elements that are at play when Rayvenn Shaleigha D’Clark talks of their experience of neurodiversity within a racial context, I wonder how we can continue to make such stories relatable, and how we can really open up our world(s) to people who might have never considered our existence before. As I’ve said above, it is surely only by telling those hidden stories – such as those outlined by Kerima Çevik – that we can really find a way into the wider cultural landscape of the societies in which we are living. More of this please!

I hope others can get the same sense from the contents of ‘Disabled People: The Voice of Many’. I also get a strong sense that we’ve become better at knowing about and articulating what we need from the world around us. Whether this comes in the form of Sky Cubacub’s accessible and gender-affirming fashion or Elora Kadir’s experiences as a disabled student operating in a deeply hostile built environment, my conclusion from reading about these experiences is that we know ourselves better now as disabled people that we ever have in the past.

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“SOMETIMES PEOPLE HOLD A CORE BELIEF THAT IS VERY STRONG. WHEN THEY ARE PRESENTED WITH EVIDENCE THAT WORKS AGAINST THAT BELIEF, THE NEW EVIDENCE CANNOT BE ACCEPTED. IT WOULD CREATE A FEELING THAT IS EXTREMELY UNCOMFORTABLE, CALLED COGNITIVE DISSONANCE. AND BECAUSE IT IS SO IMPORTANT TO PROTECT THE CORE BELIEF, THEY WILL RATIONALIZE, IGNORE AND EVEN DENY ANYTHING THAT DOESN’T FIT IN WITH THE CORE BELIEF.” - Frantz Fanon.

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CREATING CONTEXT. DISABLED PEOPLE: THE VOICE OF MANY. // 57


EVOLUTION OF DISABILITY MODELS.

YESTERDAY, TODAY, TOMORROW.

This following diagram borrows from a series of posts via Drake Music and information published on Disabled World about how we understand and have previously framed disability throughout history from outdated models to the current model upheld by disability rights activists -and the waythat they have shaped the experiences of disabled people in the future. For more details about the evolution of the models please visit www.drakemusic.org/blog/hdekretser/understanding-disability/ and www.disabled-world.com/definitions/disability-models.php and www.scielo.org.za/pdf/hts/v74n1/06.pdf *Please note, these may not be in the chronological order due to the lack of resources surroundingthe earlier models. Shades of Noir have tried to organise and make as digestible as possible for our readers*

The Religious Model of Disability Language: ‘sin’, ‘shame’, ‘act of god’, ‘divine punishment’

The Moral Model of Disability Language: ‘sin’ moral’, ‘religion’, ‘spiritual’, ‘belief’

The Eugenics Model of Disability Language: ‘normal people’, ‘abnormal people’, ‘fit’, ‘unfit’, ‘undeserving’, ‘inferior’

The Religious Model of Disability The oldest model of disability and is found in a number of religious traditions. The religious model of disability is a pre-modern paradigm that views disability as an act of a god, usually a punishment for some sin committed of some unknown action that caused their impairment. by the disabled individual or their family.

The Moral Model of Disability Refers to the attitude that people are morally responsible for their own disability. The moral/religious model of disability is the oldest model of disability and is found in a number of religious traditions, including the Judeo-Christian tradition. Up until the mid 1800s, most people thought that having a disability was a punishment from God.

The Eugenics Model A framework that came to characterise disability as we understand it today in the modern, Western world. The base logic of the theory of eugenics is that people are either fit or unfit. To be unfit is to be genetically inferior. The theory posits that efforts should be made to decrease all elements of genetic inferiority from the human race until they no longer exist. This categorisation laid the foundations for how we understand people to be disabled or non-disabled today.

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The Biomedical Model of Disability Language: ‘biology’ ‘impairment’

The Biopsychosocial Model of Disability Language: ‘undeserving’, ‘get on your bike’, ‘lazy, ‘unwilling’

The Medical Model of Disability Language: ‘cure’, ‘treatment’, ‘disease’, ‘care’

The Professional Model of Disability Language: ‘impairment, ‘limitation, ‘improvement’, ’patient’, ‘treatment’

The Charity Model of Disability Language: ‘tragedy’, ‘shame’, ‘pity’, ‘victims’

The Biomedical Model of Disability or ’Health’ The biomedical model of health is one the most dominant in the western world and focuses on health purely in terms of biological factors.

The Biopsychosocial Model of Disability Championed and developed by the private health insurance sector in America and the UK. This Model re-framed disability away from a Social Model understanding back to an individualist, quasi-medical and psychological approach. This Model seeks to put the responsibility for Disabled people’s situation back onto the individual Disabled person and seeks to strip Disabled people of rights and support.

The Medical Model of Disability Presented as viewing disability as a problem of the person, directly caused by disease, trauma, or other health condition which therefore requires sustained medical care provided in the form of individual treatment by professionals. In the medical model, management of the disability is aimed at a ‘cure’ or the individual’s adjustment and behavioral change that would lead to an ‘almost-cure’ or effective cure.

The Professional Model of Disability The Professional ‘or Expert’ Model of Disability can be seen as an offshoot of the medical model. Within its framework, professionals follow a process of identifying the impairment and its limitations (using the medical model), and taking the necessary action to improve the position of the disabled person.

The Charity Model The Charity ‘or tragedy’ Model of Disability depicts disabled people as victims of circumstance who are deserving of pity. This, along with the medical model, are the models most used by non-disabled people to define and explain disability.

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The Economic Model of Disability Language: ‘socio-economic’, ‘impairment’, ‘assessment’, ‘productivity’, ‘employment’, ‘unemployment’,

The Identity ‘or Affirmation’ Model of Disability Language: ‘minority identity’, ‘disability as identity’, ‘membership’

The Social Model of Disability Language: ‘social construct’, ‘phenomenon’, ‘integration’, ‘rehabilitation’

The Affirmation Model of Disability Language: ‘normalisation’, ‘deinstitutionalisation’, ‘disability pride’, ‘social identity’, ‘impairment’, ‘arts’, ‘non-tragic’, t‘diversity of the human condition’

The Economic Model of Disability It defines disability by a person’s inability to participate in work. It also assesses the degree to which impairment affects an individual’s productivity and the economic consequences for the individual, employer and the state. This model is directly related to the charity/tragedy model.

The Identity Model The Identity ‘or Affirmation’ Model of Disability is closely related to the Social Model of Disability, yet possesses a fundamental difference; it ‘claims disability as a positive identity’ (Brewer et al. 2012:5). ‘While the identity model owes much to the social model, it is less interested in the ways environments, policies, and institutions disable people, and more interested in forging a positive definition of disability identity based on experiences and circumstances that have created a recognisable minority group called ‘people with disabilities’ (Brewer et al. 2012:5).

The Social Model The Social Model of Disability sees disability as a socially created problem and a matter of the full integration of individuals into society. Hence, the management of the problem requires social action and is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life. From this perspective, equal access for someone with an impairment/disability is a human rights issue of major concern.

The Affirmation Model of Disability This model is essentially a non-tragic view of disability and impairment which encompasses positive social identities for disabled people grounded in the benefits of lifestyle and life experience of being impaired and disabled. This view has arisen in direct opposition to the dominant personal tragedy model of disability and impairment, and builds on the liberatory imperative of the social model. Rooting their idea in the values of Disability Pride and perspectives emerging from the disability arts movement, Swain and French identified the affirmation model as a critique of the personal tragedy model corresponding to the social model as a critique of the medical model.

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The Minority Model of Disability Language: ‘experience’, ‘normalisation, ‘social barriers’, ‘imposed’, ‘impairment’

The Diversity Model of Disability Language: ‘ableism’, ‘environment’, ‘society’, ‘civil rights’, ‘universalism’, ‘minority model’, ‘human variation’, ‘barriers’, ‘advocacy’

The Market Model of Disability Language: ‘identity’, ‘minority’, ‘economic’, ‘consumerist’, ‘self-define’, ‘market’, ‘empower’

Minority Model of Disability The Minority ‘or Sociopolitical’ Model of Disability adds to the social model and posits that disability is imposed on top of impairment via negative attitudes and social barriers; suggesting that people with disabilities constitute a entitative (possessing material existence), social category that shares in common the experience of disability.

The Diversity Model of Disability The Diversity or ‘Universalism’ Model of Disability views disability as ‘human variation’ and ‘universalism’ (to overcome the false dichotomy of ability/disability, Bickenbach et al.,1999); an alternative model intended to focus attention on how society’s systems respond to variation introduced by disability (Scotch and Shriner 1997). Under this model, the diversity of disability must be acknowledged, as well as (all) of the barriers faced by people with disability are (built-environment) imposed and therefore removable; for theory development, research and advocacy it is believed that this model serves disabled persons more effectively than a civil rights or minority group approach (p. 1173) - (Models of Disability and Human Rights: Informing the Improvement of Built Environment Accessibility for People with Disability at Neighborhood Scale?)

The Market Model of Disability The Market Model of Disability is a minority rights and consumerist model of disability that recognises people with disabilities and their ‘stakeholders’ as representing a large group of consumers, employees and voters. This model looks to personal identity to define disability and empowers people to chart their own destiny in everyday life, with a particular focus on economic empowerment. This model states that, due to the size of the demographic, companies and governments will serve the desires, pushed by demand as the message becomes prevalent in the cultural mainstream.

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The Human Rights ‘Based’ Model of Disability Language: ‘human rights’, ‘social justice’, ‘independence’, ‘political voice’, ‘rights-based’, ‘discourse’, ‘discrimination’.

The Human Rights ‘Based’ Model of Disability The Human Rights Model of Disability evolved shortly following legislation enacted in several countries in the mid 1980’s which embraced rights-based discourse rather than custodial discourse and seeks to address the issues of social justice and discrimination. However, while the rights-based model of disability has helped to develop additional entitlements, it has not changed the way in which the idea of disability is constructed. Negative Attributes: ‘community’ (allusive definition), ‘social’ ‘bad genes’ or ‘abnormality’

The Legitimacy Model of Disability Language: ‘value-based’ ‘membership’ ‘collaboration’

The Empowering Model of Disability Language: ‘empower’, ‘individual’, ‘treatment’, ‘choice’

The Socially Adapted Model of Disability Language: ‘ableism’, ‘environment’, ‘limitations’, ‘society’

The Legitimacy Model of Disability The Legitimacy Model of Disability views disability as a valuebased determination about which explanations for the atypical are legitimate for membership in the disability category.

The Empowering Model of Disability The Empowering Model of Disability allows for the person with a disability and his/her family to decide the course of their treatment and what services they wish to benefit from. This, in turn, turns the professional into a service provider whose role is to offer guidance and carry out the client’s decisions.

The Socially Adapted Model of Disability The Social Adapted Model of Disability states although a person’s disability poses some limitations in an ablebodied society, oftentimes the surrounding society and environment are more limiting than the disability itself.

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The Relational Model of Disability Language: ‘normalisation’, ‘deinstitutionalisation’, ‘diversity of the human condition’, ‘built environment’, ‘support’

The Spectrum Model of Disability Language: ‘mankind’, ‘function’, ‘reduction’, ‘operation’, ‘disability’

The ‘New’ Radical Model of Disability Language: ‘impairment’ ‘rights’ ‘disability’,’disabled person’, ‘disability justice’, ‘social justice’, ‘intersectionality’, ‘Crip’ (reclaimed), ‘Mad’ (reclaimed)

The Relational Model of Disability In the late 1960s Nirje, a Swedish social theorist, formulated the principles of normalisation emphasising strong support of deinstitutionalisation, recognition of the diversity of the human condition, and belief that people with disability and ‘normal’ (ordinary) life, including access to the built environment, are not mutually exclusive. This work represents part of an emerging grand idea of social inclusion for people with disability in the community and within the neighborhood (Nirje [1969] 1994). Following on in this continuum of Nordic interest in people - environment interaction, a new disability model developed around the end of 1990s - early 2000s, and has subsequently been recognised as the (Nordic) Relational Model of Disability (Goodley 2011) - (Models of Disability and Human Rights: Informing the Improvement of Built Environment Accessibility for People with Disability at Neighborhood Scale?)

The Spectrum Model of Disability The Spectrum Model of Disability refers to the range of visibility, audibility and sensibility under which mankind functions. The model asserts that disability does not necessarily mean reduced spectrum of operations.

The ‘New’ Radical Model The Radical Model is, arguably, the next frontier of the Disability Movement. It builds out from the political identity of the Social Model and argues that we should not distinguish between impairment and disability.

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UNDERSTANDING DISABILITY, IMPAIRMENT, CONDITIONS AND DISEASES. Key findings: •

Around 15% of the global population – over a billion people – lives with some form of disability, of whom 2–4% experience significant difficulties in functioning. Many of these people require assistive technologies such as low-vision devices, wheelchairs or hearing aids. This number is expected to double to 2 billion by 2050.

Women are more likely to experience disability than men and older people more than young.

Low and middle-income countries have higher rates of disability than highincome countries, and the impact of disability on people in poorer areas is compounded by issues of accessibility and lack of health care services.

Indigenous persons, internally displaced or stateless persons, refugees, migrants and prisoners with disability also face particular challenges in accessing services.

In recent years, the understanding of disability has moved away from a physical or medical perspective to one that takes into account a person’s physical, social and political context.

Today, disability is understood to arise from the interaction between a person’s health condition or impairment and the multitude of influencing factors in their environment. Great strides have been made to make the world more accessible for people living with disability; however, much more work is required to meet their needs. Disability is conceptualised as being a multidimensional experience for the person involved. Disabilities can affect people in different ways, even when one person has the same type of disability as another person. Correspondingly, three dimensions of disability are recognized in The International Classification of Functioning, Disability and Health (ICF) that include: •

Body structure and function (and impairment thereof)

Activity (and activity restrictions)

Participation (and participation restrictions)

The role of physical and social environmental factors in affecting disability outcomes.

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TODAY, DISABILITY IS UNDERSTOOD TO ARISE FROM THE INTERACTION BETWEEN A PERSONâ&#x20AC;&#x2122;S HEALTH CONDITION OR IMPAIRMENT AND THE MULTITUDE OF INFLUENCING FACTORS IN THEIR ENVIRONMENT. GREAT STRIDES HAVE BEEN MADE TO MAKE THE WORLD MORE ACCESSIBLE FOR PEOPLE LIVING WITH DISABILITY; HOWEVER, MUCH MORE WORK IS REQUIRED TO MEET THEIR NEEDS. DISABLED PEOPLE: THE VOICE OF MANY. // 65


“DISABILITIES IS AN UMBRELLA TERM, COVERING IMPAIRMENTS, ACTIVITY LIMITATIONS, AND PARTICIPATION RESTRICTIONS. AN IMPAIRMENT IS A PROBLEM IN BODY FUNCTION OR STRUCTURE; AN ACTIVITY LIMITATION IS A DIFFICULTY ENCOUNTERED BY AN INDIVIDUAL IN EXECUTING A TASK OR ACTION; WHILE A PARTICIPATION RESTRICTION IS A PROBLEM EXPERIENCED BY AN INDIVIDUAL IN INVOLVEMENT IN LIFE SITUATIONS. DISABILITY IS THUS NOT JUST A HEALTH PROBLEM. IT IS A COMPLEX PHENOMENON, REFLECTING THE INTERACTION BETWEEN FEATURES OF A PERSON’S BODY AND FEATURES OF THE SOCIETY IN WHICH HE OR SHE LIVES.” - World Health Organization, Disabilities.

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Disability is a contested concept, with different meanings in different cultures and communities. The term disability may refer to physical or mental limitations imposed on people by the constraints of an ableist society resulting in activity limitation and participation restrictions. The definition of disability under the Equality Act 2010 is absolute (and protects an individual from descrimination) if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. But that does not mean that a person with a disability cannot participate equally. It is important to remember that the word ‘disabled’ is an adjective, not a noun. People are not conditions. It is therefore preferable not to use the term ‘the disabled’; but rather ‘persons with disabilities.’ Disability A disability is any known condition that makes it more difficult for a person to do certain activities or interact with the world around them. These conditions, or impairments, may be cognitive, developmental, intellectual, mental, physical, sensory, or a combination of multiple factors. Impairments causing disability may be present from birth or occur during a person’s lifetime. The World Health Organisation proposes the following definition of disabilities: “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives.” World Health Organization, Disabilities

Synonyms: disorder, condition, dysfunction, affliction, ailment, complaint, illness, malady

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Types of disabilities include:

Physical disabilities

Physical disabilities A physical disability is one that affects a person’s mobility or dexterity. A person with a physical disability may need to use some sort of equipment for assistance with mobility. It also includes people who have lost limbs or who, because of the shape of their body, require slight adaptations to be made to enable them to participate fully in society. Examples include: Paraplegia, Quadriplegia, Multiple sclerosis (MS), Hemiplegia, Cerebral palsy Absent limb/reduced limb function, Dystrophy and Polio.

Intellectual or Learning Disabilities

Intellectual or Learning Disabilities People with intellectual, learning, or cognitive disability have a reduced capacity to learn tasks or process information. A learning disability may make it difficult for a person to take in information and communicate what they know. Learning difficulties can cause difficulties in reading, writing, or mathematics. Learning disabilities and Attention Deficit Disorder together affect between 3% and 10% of the population.

Psychiatric disabilities

Visual impairments

Psychiatric disabilities A psychiatric disability (or mental illness) can develop at any age and is often not apparent to other people. Psychiatric disabilities are often the most misunderstood disabilities in the community, and peoples’ attitudes may be based on prejudice and myth (e.g. schizophrenics are potentially violent). Mental illnesses can include stress-related conditions, major depression, bipolar disorder (formerly called manic-depressive illness), anxiety, and schizophrenia. Depression is the most common non-psychotic mental illness (psychosis being a disorder which features the loss of contact with reality).

Visual impairments Only 5% of ‘blind’ people can’t see anything. Visual impairments can be caused by a multitude of factors, including disease, accidents, and congenital illnesses. There is a difference between the needs of visually impaired individuals and blind people.

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Hearing impairments

Neurological disabilities

Hidden or ‘Invisible’ disabilities

Hearing impairments Deafness and hearing loss can be caused by a wide range of factors, including physical damage, disease during pregnancy, or exposure to very loud noises. There is a distinction between people who are deaf and those who have a hearing impairment. Those hearing up to three years of age (when language begins to develop) often have comparatively good speech and lip-reading ability.

Neurological disabilities A neurological disability is associated with damage to the nervous system that results in the loss of some physical or mental functions. A neurological disability may affect a person’s capacity to move or manipulate things or the way they act or express their feelings. The way they think and process information may also be significantly influenced. The brain and the spine are the areas of the body most closely associated with neurology. Heart attacks, serious infections, and lack of oxygen to the brain may also result in a neurological disability.

Hidden or ‘Invisible’ disabilities Some disabilities may be hidden, known as invisible disability. There are many types of disabilities, such as those that affect a person’s Vision, Hearing, Thinking, Learning, Movement, Mental health, Remembering, Communicating and Social relationships. Invisible Disabilities are disabilities that are not immediately apparent to others. It is estimated that 10% of people in the U.S. have a medical condition considered a type of invisible disability.

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“A LOSS OR ABNORMALITY OF PSYCHOLOGICAL, PHYSIOLOGICAL, OR ANATOMICAL STRUCTURE OR FUNCTION. IMPAIRMENTS AND DISABILITIES MAY BE TEMPORARY OR PERMANENT, REVERSIBLE OR IRREVERSIBLE, AND PROGRESSIVE OR REGRESSIVE. THE FUNCTIONAL ABILITY OF PEOPLE WHO ARE DIAGNOSED AS HAVING THE SAME IMPAIRMENT OR DISABILITY MAY VARY WIDELY.” - World Health Organisation, Impairment .

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The World Health Organization (WHO) suggested the following definition in Impairment in 1980: A loss or abnormality of psychological, physiological, or anatomical structure or function. Impairments and disabilities may be temporary or permanent, reversible or irreversible, and progressive or regressive. The functional ability of people who are diagnosed as having the same impairment or disability may vary widely. World Health Organisation, Impairment Impairments The term impairment refers to a person’s actual condition. Impairment is the specific condition with the person’s body. The World Health Organization defines impairment as ‘any loss or abnormality of psychological, physiological or anatomical structure or function’. Impairment may refer to any loss or a-typical of physiological, psychological, or anatomical structure or function, whether permanent or temporary. Identifying impairments that contribute to disability is a key factor for outcomes and further assistance. Examples of impairments include loss of a limb, loss of vision or memory loss, and ‘Activity limitation’ such as difficulty seeing, hearing, walking, or problem solving. Knowledge about impairments and disabilities is important to understand possible achieve a standardisation of activities for all. It is also a prerequisite for designing and producing products, equipment and services that can be used by as many people as possible, and for developing specialised equipment designed to assist those with a disability, impairment or long-term condition.

Synonyms: disablement, disability, handicap, impairment (noun).

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Types of impairments include:

Visual Impairment

Visual Impairment In medical terms, visual impairment can be defined as a total loss of, or reduced ability to, perceive light and colour. Within this legal definition, a wide variety of visual impairments can be found with a great dependency on information from other modalities, in particular touch and hearing. The incidence of all kinds of visual impairment increases considerably with age

Hearing Impairment

Hearing Impairment Hearing impairment implies a total or partial loss of the ability to perceive acoustic information. The impairment may affect the full range of hearing, or be limited to only parts of the auditory spectrum. The onset of the hearing impairment is important for language development and for identification with the deaf community.

Impairment of Speech Production

Impairment of Speech Production Speech impairment refers to any reduction in a personâ&#x20AC;&#x2122;s ability to use speech in a functional and intelligible way. The impairment may influence speech in a general way, or only certain aspects of it, such as fluency or voice volume. Speech impairment may be due to a number of different factors. It may or may not be linked with difficulties in speech perception or comprehension.

Impairment of Language Comprehension

Impairment of Language Comprehension This category contains a loss of, or a reduction in, the ability to understand language. The disability may imply only an impairment of language, or it may be associated with a more general intellectual impairment. Several disorders of the central nervous system may include impairment of language comprehension. Impaired language comprehension may also be developmental or acquired. The understanding of language may be strongly related to context, which means that comprehension is very dependent on non-linguistic cues, such as the presence of persons or objects, or limited to a small number of well known situations.

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Intellectual Impairment

Intellectual Impairment People with reduced intellectual ability constitute a very diverse group with a range of sensory, motor and cognitive impairments; most impairments, including visual and auditory impairment, have a higher incidence in the group that is called intellectually impaired. One common trait is that they tend to do work through activities at a slower rate than others, and in some instances have reduced comprehension of instructions and language in general.

Reading Impairment

Reading Impairment The Diversity or ‘Universalism’ Model of Disability views disability as ‘human variation’ and ‘universalism’ (to overcome the false dichotomy of ability/disability, Bickenbach et al.,1999); an alternative model intended to focus attention on how society’s systems respond to variation introduced by disability (Scotch and Shriner 1997). Under this model, the diversity of disability must be acknowledged, as well as (all) of the barriers faced by people with disability are (built-environment) imposed and therefore removable; for theory development, research and advocacy it is believed that this model serves disabled persons more effectively than a civil rights or minority group approach (p. 1173) - (Models of Disability and Human Rights: Informing the Improvement of Built Environment Accessibility for People with Disability at Neighborhood Scale?)

Reduced Function of Arms and Hands

Reduced Function of Arms and Hands Reduced function of arms and hands includes the lack of arms or hands, or reduced ability to use them due to reduced strength or coordination. This, in some cases however, does not influence speech communication itself, but implies great difficulty in using a wide range of technical and non-technical equipment. Reduced function of arms and hands due to reduced coordination is usually a result of neurological damage, in some cases. As such, reduced ability to coordinate the movements of the arms and hands will influence all activities that demand manipulation of objects or equipment. Impaired coordination may also increase the probability of hitting and breaking things, and to make errors when operating equipment.

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Reduced Function of Legs and Feet A reduced function of legs and feet implies dependency on a wheelchair or other mobility aid to help walking (e.g. crutch or stick). People with this disability are more generally otherwise able to communicate with no difficulty.

Reduced Function of Legs and Feet

Impairment of Growth

Other Impairments and Disabilities

Impairment of Growth Impairment of growth primarily includes adults who are significantly shorter than the population mean. This condition is typically caused by malfunctioning of the hormone system. It should be noted, however, that also people who are significantly taller than the average of the population may have some problems in using equipment that is mounted at a low level.

Other Impairments and Disabilities The above categories cover a wide range of impairments and disabilities. There are, however, individuals who do not readily fit into any of these categories. British studies indicate that at any given time, 0.5 percent of the population are in bed for a limited period, due to disease or accident. This is only one example of a common temporary disability. Similarly, some people have multiple impairments; for example, individuals with intellectual impairments typically have several impairments.

(Medical) Condition The term â&#x20AC;&#x2DC;medical conditionâ&#x20AC;&#x2122; generally is a broad term that includes mental illnesses, but nevertheless poses implications for the provision of health care. The term might also be used to indicate grades of health (eg.stable, serious, or critical condition), or to specifically indicate the presence of pathology or illness, In some contexts the term is used specifically to denote any illness, injury, or disease, any physiologic, mental or psychological condition or disorder (e.g., orthopaedic; visual, speech or hearing impairments; and/or specific learning disabilities), excluding mental disorders.

Synonyms: disorder, defect, disease, illness, complaint, ailment, infirmity, indisposition, malaise, sickness infection, upset.

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As it is more value-neutral than terms like disease, people sometimes prefer the term ‘medical condition.’ The term medical condition is also a synonym for medical state, which describes an individual patient’s current state from a medical standpoint. Whereby the terming of a disease is used, this defines an a-typical condition that negatively affects the structure or function of all or part of an organism, and that is not due to any immediate external injury. Diseases are often known to be medical conditions that are associated with specific symptoms and signs. Examples of medical conditions include (but are not limited to) • • • •

Alzheimer disease and dementia Arthritis Asthma Cancer

• • • •

COPD Crohn disease Cystic fibrosis Diabetes

Comparisons Impairment and Disability Generally speaking, an impairment is the actual condition, while a disability is the restriction of ability caused by the condition. Medical Condition and Disease Generally speaking, a condition simply indicates a state of health; however when related to a temporary or ongoing illness might be further classified as a disease or a disorder. As such, the term condition might be used in place of disease or disorder when a value-neutral term is desired. Disease is often used in a general sense when referring to conditions affecting a physical system or a part of the body. The term also may be used in specific senses, but is perhaps most often used when referring to a condition that possesses specific characteristics. Disease and Disorder Compared with disease, disorder is less restrictive: disorder involves a disturbance of function but stresses structural change (in negative terms). Because disorder, like condition, is relatively value-neutral when compared with disease, it is often used in place of the latter term when a less stigmatising is desirable. In short, what distinguishes condition, disease, and disorder from one another would seem to be their relative emphases on functional change, structural change, presence of signs and symptoms, a mode of stigmatisation both socially and culturally. Notes: ICF - The International Classification of Functioning, Disability and Health, also known as ICF, is a classification of the health components of functioning and disability. This classification was first created in 1980 and then called the International Classification of Impairments, Disabilities, and Handicaps, or ICIDH by WHO to provide a unifying framework for classifying the health components of functioning and disability. Sources: .GOV website, www.disabled-world.com/disability/types/, www.who. int/health-topics/disability#tab=tab_1, www.who.int/news-room/fact-sheets/ detail/disability-and-health, amastyleinsider.com/2011/11/21/condition-diseasedisorder/ and speech.di.uoa.gr/hestia/books/issues91/05imp.html DISABLED PEOPLE: THE VOICE OF MANY. // 75


“I THINK THERE ARE CERTAIN THINGS THAT WE CAN ADDRESS FROM ALL ANGLES. AND ONE OF THE THINGS THAT I DISCOVERED WORKING IN DISABILITY SERVICE IS THAT, YOU KNOW, OKAY, YOU'VE GOT DISABILITIES, BUT YOU'RE ALSO BLACK, OR YOU'RE ALSO A PERSON OF COLOUR, AND YOU'VE COME FROM A DIFFERENT COUNTRY, OR YOU'VE GOT DIFFERENT BACKGROUNDS IN TERMS OF WHAT'S SOCIALLY ACCEPTABLE OR NOT TO ASK FOR. BUT IT'S WITHIN THEIR RIGHTS. UAL AND UNIVERSITIES, IN GENERAL, SHOULD BE MAKING THAT KIND OF STANCE TO SAY, YOU ARE ENTITLED TO THIS STUDY. YOU ARE HERE TO STUDY AND THEREFORE YOU NEED THESE THINGS IN PLACE TO BE, I WOULD SAY TO STUDY EFFECTIVELY.” - UAL Academic. 76 // DISABLED PEOPLE: THE VOICE OF MANY.


EXPANDING THE CONVERSATION. Image 11

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KEY TERM VIDEO: SOCIAL ANXIETY.

SHADES OF NOIR, UK.

Shades of Noir â&#x20AC;&#x2DC;Key Termsâ&#x20AC;&#x2122; video exploring the concept of Social Anxiety. Edited by Iga Sokolowska Social Anxiety is a mental health disorder which causes overwhelming fear of social situations. It is NOT just shyness. Individuals who suffer it have to deal with debilitating thoughts, panic attacks and it affects their everyday life and relationships. Social anxiety can have a detrimental effect on work/school performance. Affected individuals have a heightened risk of leaving school early and obtaining poorer qualifications. They are also less likely to marry and more likely to divorce. However, those symptoms are preventable with the right treatment and support. Social anxiety qualifies for professional therapy, such as Cognitive Behavioural Therapy (CBT) and antidepressant medicine. Unfortunately, due to the stigmatisation of mental health services and lack of information, only half of the affected individuals ever seek treatment. To reduce those factors, attitudes need to be changed through education. Examples include public service messages, support groups, provision of books on the topic of mental health and popularisation of services such as Mind, providing free selfhelp services and educational resources. 78 // DISABLED PEOPLE: THE VOICE OF MANY.

To watch the video, please visit: www.youtube.com/watch?v=sEDIJPbLNpw&t=1s


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DISABLED PEOPLE HAVE AN ALLY PROBLEM.

IMANI BARBARIN, EASTERN UNIVERSITY, US.

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A graduate of Eastern University with a degree in Creative Writing and a minor in French from the Sorbonne, Imani Barbarin writes from the perspective of a black woman with Cerebral Palsy. She specialises in blogging, science fiction and memoir and organise a blog titled ‘Crutches & Spice’ with the byline: Disabled. Loud. Proud crutchesandspice.com/

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They Need to Stop Talking For Us My mom and I were in the store when it happened. It wasn’t the first time and it wouldn’t be the last, unfortunately. It was a common occurrence, “par for the course” as they say. An acquaintance of my mother (my mom’s real friends know better) had walked over to us and started a conversation with us. Just normal things until she switched the conversation to kids, she looked and my mother and asked “what subject does she like most in school?” Despite standing right beside my mother, despite having been introduced to me by my mother, despite the fact I had nodded quite attentively to what


“TOO OFTEN, THE VOICES OF DISABLED PEOPLE ARE OVERRIDDEN BY THOSE OF ABLED ALLIES WITH MERE RELATIONAL PROXIMITY TO SOMEONE DISABLED. WHERE FEMINISTS SEE ALLMALE PANELS ON WOMEN’S INCLUSION IN EXECUTIVE SPACES, THE SAME HAPPENS WITH DISABLED PEOPLE AND THEIR ABLE-BODIED ALLIES. ” - Imani Barbarin

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she had yammered on about, she decided to ignore my presence and address the question to my mother. For most abled people, this may seem like a momentary slip up in decorum, but for disabled people this is all to familiar: proximity to disabled bodies are confused with authority over them. This is a larger problem than many ablebodied allies realize. When it comes to creating policies, starting the planning process or creating spaces for inclusion, too often, the voices of disabled people are overridden by those of abled allies with mere relational proximity to someone disabled. Where feminists see all-male panels on women’s inclusion in executive spaces, the same happens with disabled people and their able-bodied allies. To be true to the mission of disability inclusion it requires that you think of yourself as a vessel to pass along what those in the disabled community has expressed rather than being our voice. Taking up space in advocacy on for a marginalized group is a privilege; one that you can wield to make the public sphere more inclusive or one you can use to center yourself. Ally-ship requires you to do the former, anything else is a performance. As well as frustrating disabled people, taking up space to speak instead of disabled people is ableism in itself. We are constantly being infantilized well into adulthood and speaking for disabled people reinforces that stereotype in the public consciousness. It also spreads the idea that we aren’t autonomous, are unable to give consent and aren’t knowledgeable about the factors that affect our lives. Before social media and online networking, there 82 // DISABLED PEOPLE: THE VOICE OF MANY.

were little-to-no examples of disabled people we could look to as examples of what it meant to age into adulthood. What little space we had was overpowered by ableist narratives and the relatives and caretakers of disabled people. I hate to have to tell you (no I don’t), but the authorities on disabled people are disabled people. No matter how close you are to a disabled person, you cannot completely know what it means to be disabled or experience the world and its people in a disabled body. There’s no way around it. You may bear witness to our daily lives and still not know what it is like to live as us. That’s why you immerse yourself in the words of the disabled people you care about and educate yourself with the work of disabled advocates. If you’re worried about a disabled person not being able to advocate for themselves when you’re not around, then talk about it. Have that difficult conversation and follow the advice on fostering self-advocates. When sharing information about us, make sure you point to sources or specific disabled people who can expand upon it. Essentially, pass the mic. Because, no matter the way we walk, talk, communicate, no matter the medication we take, what our bodies decide to do, or what mobility device we use, disabled people will always be the first and last authority on disabled people. So, what did my mom do each and every time an able-bodied person acted like I wasn’t there? She would smile the smile of a thousand black women trying not to turn the person before them to ash, nod to me and say, “she’s right here, you ask HER.”


MENTAL HEALTH AND DISABILITY IN THE ARTS.

MERISSA HYLTON, BLACK BRITISH VISUAL ARTISTS (BBVA), UK.

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Black British Visual Artists is a movement created to bring together artists from the African and Caribbean diaspora living in the UK. It aims to provide a platform for artists to network, exhibit and share their talents with the wider art community. www.blackbritishvisualartists.com/

• • • • • • • •

Founder of BBVA Full-time Artist Part-time Tutor/Academic Wife Mother of 2 boys & 1 cat Cancerian Non-conformist General left-handed bad-ass female

Instagram: @blackbritishvisualartists www.blackbritishvisualartists.com #BBVAConversations

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“ONE OF THE MOST FREQUENT THINGS PEOPLE WITH MENTAL HEALTH ISSUES WILL HEAR IS “BUT YOU LOOK OKAY...” IS ILL MENTAL HEALTH A PREREQUISITE FOR ARTISTIC SUCCESS?” - Merissa Hylton.

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AMERICAN PRACTITIONER.

JERRON HERMAN, KINETIC LIGHT, NEW YORK CITY.

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Jerron Herman is an interdisciplinary artist creating through dance, text, and visual storytelling.

As a writer, Jerron was a finalist for the inaugural Lark Play Development Lab/ Apothetae Playwriting Fellowship.

His performances have begun to shed light on an often overlooked niche of performance.

He was recently nominated for the prestigious United States Artists Fellowship in Dance.

He currently sits on the Board of Trustees at Dance/USA and is a proud member of The Disabled List and WITH, brain children of innovative thought leader, Liz Jackson.

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Naming

Organize

My left foot, flexed, lifts in the air to swipe perpendicularly from my torso ala a Capoeira student. My body, compact, shifts at the shoulders and my right hip sinks down toward my shin. My head drops. All the while, my left-hand _______(constricts? Tightens?) pulses (spasms aren’t static, after all) against my chest. This might be an example of my explaining my body in movement.

Knocking on my door won’t get you in immediately. I hear the knock: a well-meaning grant application, funder, critic coming to ask about process or politically correct language. They’re knocking, but I have to organize my body to get up from this spot.

The aspects of language that I’m most concerned with are clarity and imagination. Can I help someone feel what I’m saying as there are various ways we see, hear, and feel the dance? This might take ten minutes to write, it might be twenty if you consider what’s unhelpful jargon or an outdated term; what about his facing? And we haven’t even considered emotions. This might be the last step in a creative process – the synthesizing step where you’ve first thought this movement up, rehearsed the composition, ensured consistency, and can now relay artistry to others. It is really this step that illuminates a commitment to disability artistry and how one practices disabled art. For one thing, it is integral to an audience that requires varied access. For another, it is integral to an audience that requires a deep experience like any audience. It’s in the naming of certain experiences that millions share. It’s naming the quiet nerves and not so quiet muscles’ travel pattern create a work of art. Societally, we’ve been naming this community without credit for centuries and it’s time to recognize. The coming surge of disability genius in mainstream art is nothing more than evolutionary.

You might have heard the password at the last task-force meeting and you got excited – there’s nothing like access. You might even use the password correctly, but I have to organize my body to get up from this spot. You might have taken the path here after work, after the board meeting, after Marketing told you something new. You might have just stumbled on it or heard it in the keynote address at that last conference. You might have travelled far, farther than me to that door, but I still have to organize my body to get up from this spot. And so, you wait until I can answer you. Answer you. I read deadlines as impatient. Though I would never deny someone wanting what they want, when they want it, I know why you set that pace. For those who wait for the door to open, you’ll see the luster inside. You’ll see language transformed, you’ll sit easier, you’ll reset. You’ll sit. You’ll sit. You’ll sit. You’ll learn that a chair is a limb and a gesture a soliloquy; you’ll be transported by touch DISABLED PEOPLE: THE VOICE OF MANY. // 87


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and pressure if you wish. You’ll sit. You’ll never be out of the loop. Others will try to include you. We will fail at being 100%. We are not afraid of failure.

…and the Holy Ghost The third section title, though cheeky, is something I feel deeply when I think about the disability community – divine. Without being overly simplistic, the kindred spirit I share with so many artists who have disabilities makes me very aware of an activity beyond me. There’s something orchestrated and deep about how the community is devised. I think about my first performance as a dancer. It

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was twilight on the Lincoln Center Plaza pavilion and we’d just taken our bows. While drinking champagne in the middle of summer, I noted how divine the setting was and my being placed within it. A well-meaning “crip elder” stopped me short to say, “No, there’s nothing divine about this. You did this.” And while I appreciate the redirection, it seemed to miss the utterly beautiful way two things can be true at once. While I had prepared rigorously for this dance performance, I was still a benefactor of grace. Nothing in my own imagination could have divined that thing to happen. Up until very recently, I’ve only imagined as far as I could go, alone. But I will tell you that just as I believed in my Pentecostal upbringing, I believe the spirit seems to move. There is now a we. We can now imagine a host of things. We’ve filed under the same tent and became daring in our declarations so that Presidents sign proclamations and school syllabi change.

Maybe it was a tent, maybe it’s now a dance floor and the moshing has commenced: the bustling halls of a transformed downtown space where chairs, crutches, and wobbly limbs abounded. Hiccups and shouts wafted up the walls as people read captions and ASL interpretations of art pieces onstage. It was my first experience of a truly crip space at Performance Space in New York, coordinated by them, Arika UK, and The Whitney Museum, guided by several disabled artists. And like an access check to the fiery mosh pit, we tossed our bodies around in a slower timbre. And at its apex, after hearing prophet-poets magically direct your brain to images you’d never thought of, after learning about ancestors, after hugging or waving to your fellow reveller, after imbibing sweat, you watch a mandala of bodies circle inward to match touch – implicit consent, implicit language – and speak to each other, recite to each other, create images from fingers like air painting and you feel the fullness of the activity beyond you. You see a host of threads vibrating as you watch and wave and wobble. This is the beginning of disabled art in America.

We’ve felt the fire and excitement of our imaginings and we threw our bodies around until curb cuts were created and restaurants made larger bathrooms.

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ACADEMIC TRUTH.

ANONYMOUS, (SHE/HER), UK. Living and working in academia with dyslexia is a challenge. How people see you and judge you for not doing, seeing and thinking in a normative way is endless... Living and working in academia while black, having dyslexia all the while still being a woman is a challenge as you have the intersectional judgements and acts of prejudice, with the added voice of parents that instilled in you that you need to be 10 times more skilled than your white counterparts - your life experiences confirm that this is true by the way. This is a very heavy burden to carry… Oftentimes I feel vulnerable and vulnerability emanate from how people behave towards you, what is said to you and how I do, need and process things. Vulnerability defines as: exposed to the possibility of being attacked or harmed, either physically or emotionally (someone) in need of special care, support, or protection because of age, disability, or risk of abuse or neglect or (something) liable to higher penalties, either by convention or through having won one game towards a rubber. Why do I continue to work and try to build a career in a sector that makes me vulnerable? That, for the most part, presents to me as being somewhere I do not belong? Because I’m good at it.

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I see and help others like me or different in many other ways and that makes us vulnerable. I use my vulnerabilities as a mechanism - a frame and cannon to illustrate to my students and fellow peers that they are all unique too - what if there is no normal? In our uniqueness, we can build, change and impact the world in some way. The saddest thing is that students are the most receptive to this line of thinking and I often witness students blossom in knowing that within ‘our’ space that they are all unique. But, what does it mean when my peers build walls and masks that means often we can’t reach each other with the one thing we are all supposed to have in common… humanity? (considering) human beings collectively (benevolence). Bibliography: Ball, S.J., Vincent, C., Gillborn, D. and Rollock, N., 2014. The colour of class: The educational strategies of the Black middle classes. Routledge. Baker, D.L. and Leonard, B., 2016. Neuroethics in Higher Education Policy. Springer. Freire, P., 1996. Pedagogy of the oppressed (revised). New York: Continuum. Gillborn, D., 2015. Intersectionality, critical race theory, and the primacy of racism: Race, class, gender, and disability in education. Qualitative Inquiry, 21(3), pp.277-287.


THE HEALING POWER OF ART IN INTERGENERATIONAL TRAUMA: MAD ROOM. GLORIA C SWAIN.

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Gloria C. Swain is a multidisciplinary female artist, activist, and seniorsâ&#x20AC;&#x2122; rights and mental health advocate working out of Toronto. She works within the mediums of installation, painting, performance, and photography to challenge systemic oppression against Black women and trans folks. Website - glcarissa.tumblr.com/

Race, Sex, Age and Disability. Conversations and organizations within the mainstream art world do not typically include access and inclusion for disabled artists. As an aging Black woman artist with a mental disability, I have personally, encountered such barriers as inaccessibility of art education and training, inadequate resources and support, and the lack of welcoming spaces for disability and Mad aesthetics. Tangled Art + Disability is a non-profit organization in Toronto, Ontario that has been cultivating DISABLED PEOPLE: THE VOICE OF MANY. // 91


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disability art in Ontario since 2003 by supporting the work of disability, Deaf, and Mad-identified artists through professional development workshops and holding cost-free and accessible disability art programming. In 2016, Tangled opened the Tangled Art Gallery (TAG), Canada’s first art gallery dedicated to showcasing disability, Deaf, and Mad art and advancing accessible curatorial practices. All of TAG’s exhibitions and programming offers audio description, American Sign Language (ASL) interpretation, and personal support workers. All of their events are wheelchair accessible, they welcome service animals, and the art is hung at accessible levels. These practices, which are in no way common practices in mainstream galleries centred on white, cismale, non-disabled subjects, are important for the way that they centre disabled, Deaf, and Mad artists and audiences. 92 // DISABLED PEOPLE: THE VOICE OF MANY.

In 2016, I was the Sharon Wolfe Artistin-Residence at Tangled Art & Disability, which was an opportunity that increased my own understanding of disability and the definition of Mad art. In this residency, I created over 50 paintings to fill the Tangled Gallery for my solo exhibition. In the exhibition’s title, I use the term ‘mad’ in a Foucauldian sense to refer to how antiBlack racism impacts my mental health. I spent two and half months and over three hundred hours working on my art exhibition titled, Mad Room. The paintings featured mixtures of vibrant textured shapes and colours that created a relaxing environment and all the paintings were ‘touchable’ which allowed people to embrace the work. Along with the paintings, this exhibit had a bed containing two blank canvases and a white textured mask with blue eyes, a monitor featuring the artist statement with visuals, a small table with


re-labelled empty pill bottles and a coat hook with white clothing hanging on it. My artist statement was in the form of a short video which was closed captioned. The artwork was divided into sections: healing space, stigmas, traumatic, perseverance, demeanour, secrets, violence and mental disability sharing my journey with depression and anti-Black racism.The whole exhibition was audio described. As a disabled, Mad Black female artist whose experience has taught me that art can be a refuge from the intense emotions associated with illness, disability and disablement, I feel it is important to share opportunities, resources and space in the healing process. Disability arts allow an outlet for my pain and I can share lived experiences with other Black women. And so, along with being an art exhibition, I wanted Mad Room to be a community space by and for other Black women to talk about mental disability. This began during my residency as I invited other Black artists to visit me in my studio. In these visits, I showed these artists my work-in-progress and they could give me feedback. This also gave me the opportunity to introduce these artists to Tangled. Throughout it all, I could use my art-making space to open up opportunities for often-quieted conversations about mental health disabilities in Black communities and the connection between madness, colonialism, intergenerational trauma, and state-sanctioned anti-Black racism, like police brutality. These conversations continued after the exhibition as I held 16 (true!) artist talksâ&#x20AC;&#x201D;an unprecedented number of artists talks at Tangled.

Many of these artist talks created space for my community to talk about the experience of madness in Black communities. This was also an opportunity for me to disrupt the â&#x20AC;&#x2DC;strong Black womanâ&#x20AC;&#x2122; trope and focus on healing from intergenerational trauma. Sharing my story through disability arts opened up conversations wherein people could speak freely about their own struggles with racism, ableism and how these systems of oppression intersect with and amplify experiences with mental health disabilities. Mad Room represented madness differently than it is represented in mainstream culture. Disability arts continue to create community, raise political consciousness and bring action to social issues. I continue to have these conversations today with other Black women through my art. The full article, The Healing Power of Art, can be found at cjds.uwaterloo.ca/ index.php/cjds/article/view/469/711.

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A FEW WORDS FROM ROTIMI AKINSETE.

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Rotimi Akinsete is the Associate Dean of Students (Wellbeing and Inclusion) at the University of the Arts, and a licenced therapeutic counsellor and clinical supervisor with extensive experience in community and NHS counselling services. He is founder and director of Black Men on the Couch, a special interest project focussing on psychotherapy and identity politics of African and Caribbean men and boys.

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Who said the Social Model of Disability couldnâ&#x20AC;&#x2122;t co-exist with the social theory of intersectionality? Right from the beginning of engaging with this important publication, I salute and welcome the fresh approach to redefining the term. For many reasons, the 40-yearold definition of what makes a defines disability was always going to evolve into what makes a disabling society, as nothing worthwhile ever stays the same. And why not â&#x20AC;&#x201C; especially if the current definition is only currently restricted to defining AngloAmerican societal values and restricted to a


narrow view of disability that goes beyond the physical? It makes complete sense in my mind that we would now take what Melanie Davies describes as a ‘Cultural Studies’ approach to show the criticality of inclusion.

Anyone who argues otherwise probably doesn’t know what they are talking about.

A newly refined Social Model approach can only but help to defeat disability discrimination in the same way that a redefining of society using the cultural studies approach will eventually ‘help to defeat racism’. With this in mind, how are we not to be enticed by something that promotes inclusion and not separatism?

Based on my professional experience of working with and actively listening to the stories of disabled people and working alongside those who support disabled people, I can only but concur with Rebekah Ubuntu – to say that disabled people are disabled and nothing else is nonsensical. We are all each within ourselves a multicultural, made up of things that we are very aware of, and things that we are not.

This particular question has to be asked: is it always good to start with The Social Model of Disability when discussing what makes someone disabled and the disabling society we find ourselves in? What about all the individual experiences contained herein and concurrently, how is it that these experiences can be expressed and still be socially relevant? Working in an institution such as UAL I have begun to understand that any positive self-expression of those who identify as disabled, will help institutions to meet their legal obligations. The law around disabilities is indeed underpinned by The Social Model and it is clearly stated by services supporting disabled individuals that the focus of work and communication surrounding removing barriers within the environment (both physical and social) remains at its core. I have heard people say that commenting on individual experiences can lead to unhelpful generalisations or assumptions being made about what a disabled individual needs. I am not sure. In my opinion, actively listening to personal stories in an appropriate way will help negotiate the context in which the individual storyteller finds themselves in, whether the institution happens to be a hospital, university or government office.

And if you think I don’t know what I’m talking about - then educate me.

What is internal is external, and vice-versa. We must strive to become conscious and thoughtful about how, why and when we choose to or allow ourselves to be defined by our intersections because when you make one of those characteristics a priority, you miss out. I really value and respect a view that that says an individual or a community is made disabled by a power structure, and ultimately that their opportunities are restricted by a western colonial zeitgeist. Who would have thought that this (somewhat invisible) disabling condition ever existed? This realisation came to me clearly when working with black, disabled clients and reflecting on the experiences of those with mental health conditions and learning disabilities within my own family. The visceral (and disabling) discomfort I felt on upon my first visit to West Africa in the 1980s and witnessing disabled individuals abandoned in towns, villages and cities made me wonder how far we have come from being a communalist society that cared for all regardless of circumstances to being a community affected by the individualistic pressures of modern-day society. I am not sure how much this may have changed over the last 40 years, but I do know that it DISABLED PEOPLE: THE VOICE OF MANY. // 95


“TO CONCLUDE, I ASK MYSELF: ‘ISN’T IT THE ULTIMATE HUMILIATION THAT IT IS US, ABLE-BODIED INDIVIDUALS WHO ARE THE UNCOMFORTABLE ONES, PROJECTING THIS DISCOMFORT BEYOND OURSELVES? IF SO, PERHAPS WE SHOULD SPEND MORE TIME CONSIDERING HOW WE MIGHT ADAPT OUR SURROUNDINGS AND OUR ENVIRONMENT AND NOT THE INDIVIDUAL WHO HAPPENS TO HAVE A DISABILITY. COLLABORATION IS THE KEY, AND DURING THE PROCESS OF COMMUNICATION, THE OTHER IS CHANGED. SOCIETY IS CHANGED.” - Rotimi Akinsete. 96 // DISABLED PEOPLE: THE VOICE OF MANY.


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remains a common battle for the disabled community to be accepted as ordinary members of society, wherever they may be. To conclude, I ask myself: ‘isn’t it the ultimate humiliation that it is us, able-bodied individuals who are the uncomfortable ones, projecting this discomfort beyond ourselves (as similarly contemplated by Ava DuVernay)? If so, perhaps we should spend more time considering how we might adapt our surroundings and our environment and not the individual who happens to have a disability. Collaboration is the key, and during the process of communication, the other is changed. Society is changed. As a therapist, I continually work in a way that allows me to immerse myself within the life experience of another, at the very least at an empathetic level. To immerse ourselves, as able-bodied people, into the world of someone else can only go some way to understanding the plight and the struggles of those with

disabilities. Just as important however is an active acknowledgement that those with disabilities not only be defined by one aspect of themselves but acknowledging that we all have varied identities and belong to many communities and ‘can share a great deal if society includes all’ (Eleanor Lisney). References: Dyslexia: Naming pedagogic Differences in the Art School, a cultural studies perspective. Melanie Davies 2019 in Inclusion and intersectionality in Visual Arts education.

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INVISIBLE DISABILITIES AND IMPAIRMENTS: STUDENT EXPERIENCE. The premise of the screening and assessments for dyslexia and other Specific Learning Differences (SpLD) is to confirm a positive diagnosis which is carried out by an external assessor. Scenario: Shelly is an associate lecturer (in training) and found that she was having increased difficulty in completing online tasks and work preparation that required long amounts of screen-time. She had been struggling for some time and decided to contact Student Support Services who forwarded her onto the Disability Services. She was hesitant as she feared she would struggle to relay her symptoms to the Disability Advisor, but after a 45-minute consultation, Shelly was told that she is a strong candidate for full Diagnostic Assessment for dyslexia and other Specific Learning Differences (SpLD). Shelly found the experience useful in verbalising the difficulties she was having with her vision in preparation for the upcoming Diagnostic Assessment. A short time late, Shelly underwent assessment and the diagnostic report concluded that Shelly scored highly for Visual Impairment (Visual Stress) and that she needed to seek further support through Disability Services in order to access temporary support and adjustments whilst working (teaching) and studying and was assured that the Coordinator will explain what kinds of support may be available, as well as how to access this. 98 // DISABLED PEOPLE: THE VOICE OF MANY.

Shelly was relieved that she finally had a diagnosis for the difficulties she was struggling with and that it had been completed prior to her beginning her postgraduate degree which required her to teach as well as complete assignments throughout the duration of her course of which she felt that she would need adjustments.

“The advisor informed Shelly that while Visual Stress is considered a ‘visual impairment’, the University was unable to assist her further in regards to adjustments and that she did not qualify for further support for students with sensory impairments.” As part of the Recommendations / Onward referrals contained within her report with regard to visual difficulties, it was recommended that she undergo a comprehensive eye examination with a registered optometrist.


Following her assessment, it was noted that whilst she scored highly on suffering from visual (stress) difficulties, she did not have a diagnosis of dyslexia or Specific Learning Difficulty (SpLD) as defined under the Universities remit, but she was again put in contact with Disability Adviser who discussed some of the options open to her in regards to access and support needs. The advisor informed Shelly that while Visual Stress is considered a ‘visual impairment’, the University was unable to assist her further in regards to adjustments and that she did not qualify for further support for students with sensory impairments.

“Shelly was told to consider booking an optometrist appointment costing hundreds of pounds in order to seek further assistance...”

“From this experience, Shelly felt that the Disability services lacked empathy in regards to her diagnosis as a duty of care’ and was deeply disappointed...” Shelly qualifies as both a staff and student at the University and was shocked that in either capacity Disabilities services were unable to offer her any help in regards to her impairment or signpost where to find further assistance. From this experience, Shelly felt that the Disability services lacked empathy in regards to her diagnosis as a duty of care’ and was deeply disappointed with the referral outcome as she was left to conduct her own research in order to seek reasonable adjustments with no further assistance from the university.

Shelly was told to consider booking an optometrist appointment costing hundreds of pounds in order to seek further assistance in regards to the severity of her condition, and that the University has no way (budget) of facilitating this to happen. They similar recommended that she seek workplace adjustments from her department but could offer no more information about this process.

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IN CONVERSATION WITH MARIA OSHODI.

SHADES OF NOIR, UK.

Shades of Noir spoke to Maria Oshodi, the artistic director and CEO of extant and freelance artist, about accessibility and diversity in the arts, and fun and music and performance. We would like to thank Maria Oshodi for taking the time to speak with us How did you come to create Flight Paths? I founded Extant (a dynamic space formed in 1997, intended to redress our invisibility as visually impaired artists and explore new creative territories). We had started exploring aerial movement and audio description delivered live in 2012 as part of a production called Sheer. After this, I wanted to explore it further so I got in touch with two other Artistic Directors Vicki Amedume (Upswing) and Kumiko Mendl (Yellow Earth Theatre through Sustain Theatre - an initiative that draws together arts organisations led by BAME people from different regions in the UK. I introduced 3 blind performers, Nigerian soprano Victoria Oruari, Japanese Viola player Takashi Kakuchi and American aerialist Amelia Cavallo. Kumiko introduced us to the historic tradition of the Biwa Hoshi - blind travelling artists from Japan who would make a living through art, and we sometime later found out that from the Biwa Hoshi developed a female tradition, the Goze. As usual, the female part of the history was buried. Unfortunately two of our original performers pulled out, though we had spent a number of years building up the piece around their personal stories, and we only had Amelia Cavallo left. There were only five blind aerialists in the world, but luckily Sarah Houboult from Australia stepped in. Having two female blind 100 // DISABLED PEOPLE: THE VOICE OF MANY.

performers worked well to reflect the Goze focus of the production now – in Japan they spent five years as disciples training with each other, following and learning from their female visually impaired guide. Towards the end of the five years, they would present to a whole audience of blind Goze, who would decide if they passed or failed. If they passed, they would travel the length and breadth of Japan as artists for their whole lives. This mapped beautifully onto the telling of contemporary stories of travelling blind artists which Amelia, Sarah, Takashi and Victoria’s narratives are part of. (Although Takashi and Victoria didn’t want to tour we still managed to keep their stories in the show through multi-media representation). How do you build accessibility into your productions at Extant? Our whole method at Extant is based around redefining the artistic and cultural space around visual impairment, and disability in a broader sense. We tell stories in a way that are informed by visual impairment. We perform to everyone, but creating access for visually impaired audiences is at the heart of what we do; accessibility is not just tagged on at the end. In Flight Paths, we wanted the aerial performer (who was also visually impaired) to describe her own movements in time and space, rather than the description of the physical actions being relayed by a non-disabled person. With traditional audio description, you get a disembodied voice coming through the headphones, but with our methods, you can hear where the voices of the performers are coming from where their actual bodies are physically in space. When the choice of what the describer wants you to see is made elsewhere, and not from


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the bodies of the disabled person on stage, it takes power and agency away from the performer, since the describer has the power to describe what they want you to see. There is a power dynamic in that version of accessibility, and we wanted to take back that control. It’s interesting how insidious the power dynamic can be in arts with marginalised people. It’s not just what happens on stage; the assertion of us as people of colour and disabled people has to take root really at the beginning of a production, especially in a culture that is conditioned not to see us in a leadership capacity but would prefer to have a more paternalistic association with us, no matter how advanced in your career you are. It is a long journey of resistance, from the beginning when you say you want to make a piece of work, battling through to get to the point where you can make a piece of work that is truly radical. Has it gotten any better throughout the course of your career? We are in funny times at the moment, as in some ways things were much more innocent 20 years ago. Now there’s more awareness, but I feel the danger is that this level of awareness can be theoretical and some people don’t see their own collusion with racism, ableism and classism. These are the people who assert they are non-racist, non-ableist and nonclassist, giving a higher attention to issues of inclusivity, but the real issue with these established elites is that they are the first to shout about issues of equality without seeing their own divisiveness and power-play. I’ve been doing the same workaround elevating the narratives of marginalised people my whole career. I have access to different resources and an agency that I didn’t have when I started out, that means I can have more control over the eventual outcome now. But this doesn’t mean I don’t still have battles to face. However, I can see myself returning to a more intimate space where I’m focusing more on personal content and I 102 // DISABLED PEOPLE: THE VOICE OF MANY.

really want to get back to that place of being able to explore stories and the quality of my own writing. I’ll always tell the stories about marginalised people and our experiences as these voices still need to be raised. Do you see your work as activism? It is a version of activism, but it’s hard to see your work as activism when you always have relationships with funders and a tight framework around what you do. The principle of the organisation has grown out of the movement of the 70s and 80s, the empowerment of disabled people spawned by the civil rights movement, the realisation that rights-based issues were something to fight for. That radicalism has now been replaced by inclusion which feels like a dilution of that spirit, in that blanding out sometimes you feel like a slave to processes of the dominant culture. I always try to remind the Company to turn ‘everything’ around and make it, content, form, presentation relevant to us as ‘other’ though, as that is where the originality sits, not in aping what’s already out there. The harder something gets to materialise, the more of a challenge I take it to be and the more persistent I become in trying to achieve it. Is accessibility in theatre and performance getting any better? For some popular more commercial theatre, yes, but on the other hand not really as it can be expensive; though it is interesting that there is a growing desire among young theatre makers to take on the challenge of making work more inclusive. There is a release in taking on other people’s views of the world to inform your practice, and for me, diversity is about that place of genuine exchange that can become part of a creative force. Diversity to me means equality and opportunity at every level, at leadership levels as well, to challenge decision-makers and even the roles of those decision-makers themselves. A contemporary organisation which started around the same


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time as Extant is ‘Attitude is Everything’, an interested in trying to give access to disabled organisation that aims to improve access people to just have fun and be able to do the to live music for deaf and disabled people. same things that non-disabled people can do. Going out clubbing, and to gigs, the whole dance culture, had been such a vital part of You can follow Maria’s work on her my experience as a teenager and into my 20’s website and the website of Extant, and to some part still is now, so I told my and her Twitter is @djbb09 friend - the CEO of AIE Suzanne Bull - that I wouldn’t mind having a go at DJing. My “We are in funny times at the moment, as in DJ name is Blind Bling, and people brought some ways things were much more innocent me blingy things to wear. It’s still part of my 20 years ago. Now there’s more awareness, passion for finding ways of bringing people but I feel the danger is that this level of together, but it’s just a different outlet for awareness can be theoretical and some people that. I created an Afro-Cuban percussion don’t see their own collusion with group called Besta Vista in 2000 with Neville racism, ableism and classism.” Murray as the disabled drum tutor. I wanted to start drumming but no drum circle knew Interview by Florence Low what to do with me as a blind person. Besta Vista while it ran - until 2007 - and had an ethos that was inclusive, collective and performative and people from very different backgrounds took part. I’m happiest when I’m surrounded by difference. I really am 104 // DISABLED PEOPLE: THE VOICE OF MANY.


“WE ARE IN FUNNY TIMES AT THE MOMENT, AS IN SOME WAYS THINGS WERE MUCH MORE INNOCENT 20 YEARS AGO. NOW THERE’S MORE AWARENESS, BUT I FEEL THE DANGER IS THAT THIS LEVEL OF AWARENESS CAN BE THEORETICAL AND SOME PEOPLE DON’T SEE THEIR OWN COLLUSION WITH RACISM, ABLEISM AND CLASSISM.” - Maria Oshodi.

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UNDERSTANDING VISUAL IMPAIRMENTS.

CLAUDETTE DAVIS-BONNICK.

Claudette Davis-Bonnick specialises in teaching design realisation and garment construction. They have been teaching for a number of years at the UAL, LCF and would like to share some of the sewing skills that her students have mastered. Seeing is Believing is a strand of activity led by Claudette Davis-Bonnick, a pattern cutting tutor at the London College of Fashion, which seeks to overturn barriers to learning to cut out and create garments experienced by the visually impaired. This short paper Seeing is Believing gives the background Claudette’s ground-breaking project and shares her students’ reflections on what it has meant to participate in it, often after dispiriting experiences of formal education and prejudice. To access more resources, visit www.davis-bonnick.com

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Ocular centred mainstream creative arts universities. “It is understanding the disability we are challenged with, not the person with the disability...” Fashion today is a major production industryvalued for its contribution to Gross Domestic Product (GDP) worldwide and is a major source of employment for millions of people. However, for some sections of the population, such as those with visual impairment (VI), it has always been considered an impossible task for them to contribute to the industry in any way. Inclusivity of students with visual impairment (SVI) goes beyond the educational environment. It also means gaining an understanding of the disability, which does not define the student. I conducted a research study to explore successful inclusive teaching and learning for SVI attending creative arts courses at mainstream university. The study led to uncovering and creating reasonable adjustments and the use of assistive technologies. It also highlighted the necessity to adopt a holistic approach and a greater understanding of sight-deficiency and sight-loss. Whilst the study was mainly student-centred it investigated the effects on the curriculum, as well as the physical inclusion upon practitioners, mainstream and the university structure. The research further considers the challenges faced for people with VI and the processes needed to encourage SVI to join mainstream courses in a high-profile, creative arts university.


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In 2013, the University of the Arts, London (UAL) reported that approximately 20 SVI were registered, although it was unclear which courses they attended. Barer’s (2007) research on behalf of the Mayor of London predicted there will be a steady increase of SVI attending the UAL, many of whom self-select out of studying fashion and go to great lengths to hide their disability or attend and declare their sight-loss, seek reasonable adjustments and Disabled Student Allowance (DSA) as students are under no obligation to disclose their sight condition (RNIB). Preconceptions of Visual Impairment: I was often asked, ‘If they can’t see, how can they understand what beauty is?’ That statement appeared to me to be based on sight-impairment being equal to total sight-loss, visual aesthetics and an underlying assumption that beauty is purely ocular, and therefore the privilege of people with full functioning eyesight. The question of beauty is a study in itself. People with low vision and blindness are not excluded from the world in which we all co-exist and make connections. They too have new experiences and lead normal lives. Kathleen Huebner (2000, p.56) argues that ‘an understanding of visual impairment is rooted in individual life-experiences’. Similarly, Fougeyrollas & Beauregard (2001) discuss the ‘reductionist representation of disability and emphasised the role of environmental factors in the disability process’ (p.171-172) in which legislation has contributed to improving the public’s attitude towards disabilities. ‘[whilst] on one hand, there is the Social Model that attributes the disability entirely to the environment, ignoring factors relevant to the person [,] there is the Biomedical Model that mainly focuses on the person, and resists consideration of environmental factors (ibid.) (WHO, 1980) 108 // DISABLED PEOPLE: THE VOICE OF MANY.

The numerous categories of visual impairment/low vision which prevent a person from seeing clearly and how they react with the world can also affect the way that they are perceived by society and educational provisions. Understanding the range of sight deficiency, why it occurs, and each individual’s responsibility to look after their sight is to become informed - which allows the opportunity to question, to change one’s perceptions and to bring about effective change. References: Barer, R. (2007) (MAYOR OF LONDON) Disabled students in London: A review of higher and further education, including students with learning difficulties. London: Greater London Authority, London. Fougerollas, P. & Beauregard, L. (2001) An interactive person-environment social creation In: Albrecht, G.L., Seelman, K.D. & Bury, M. Handbook of disability studies. London: Sage Publications UK. Huebner, K. (2000) Visual impairment. In: Holbrook, C., & Koenig, A.J. Foundations of Education: Vol. 1 History and theory of teaching children and youths with visual impairments. 2nd eds. New York, AFB Press. RNIB. Your Rights in Education. [Internet]. Available from: <http://www.rnib.org.uk/ information-everyday-living-education-andlearning-adult-learning/your-rights-education> WHO (World Health Organisation) www. who.int/mediacentre/factsheets/fs282/en/ Image credit: Claudette Davis-Bonnick. A. Illman.


“IT IS UNDERSTANDING THE DISABILITY WE ARE CHALLENGED WITH, NOT THE PERSON WITH THE DISABILITY...” - Claudette Davis-Bonnick.

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LEMON ART.

CLAUDIA SIN, LEMON MINGYUE WANG, CAMBERWELL COLLEGE OF ARTS, UK.

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Shades of Noir digital campaign A collaboration with Claudia Sin for Shades of Noir ‘Disabled people, The Voice of Many’ digital campaign. www.thelemonart.com

“Disabled people, the voice of many” is the digital campaign topic that we chose to work on. The result is a series of animated gifs featuring different fabric pieces with hand drawn figures and graphics, in response to rising awareness for both visible and invisible disabilities among our diversified community. Hand-drawn figures with variable geometrical shapes represent the diversity in our bodies and identities, contrasting the common representation of uniformed “female and male” disability signages.

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Graphical elements such as eyes, mouth, ear and hands were drawn to represent common visible disability. Abstract doodles lines were drawn to represent invisible disability such as dyslexia, ADHD, this is inspired by South Korean artist Seohye Lee’s illustration “Sphere of Sound”, which she uses abstract lines to represent sound.

With the lack of diversity and positive models in our current representations for disability, it is important that we, as art students, enrich the artistic representations for disability and the social model of disability. To view, visit: shadesofnoir.org.uk/lemon-and-claudia-group

“The Social model of Disability” is the starting point of our research for this project. It is the current society that is disabling people with impairments rather than the impairments themselves. DISABLED PEOPLE: THE VOICE OF MANY. // 111


UNTITLED (2019).

KANA HIGASHINO, CENTRAL SAINT MARTINS, UK.

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A FEW WORDS FROM LANI PARKER. Sideways Times is a UK based podcast, in which we talk about the politics of disability, disability justice, struggles against ableism, white supremacy, capitalism and heteropatriarchy. Through this podcast I hope to have many conversations which broaden, deepen and challenge our understandings of how we work against ableism and how this connects to other struggles. Sideways Times aims to connect theory and practice and contribute towards a culture of learning and creative thinking within our movements as a collaborative space that encourages deep and critical thinking and creativity, and we are more concerned with exchange of ideas and knowledge than we are with ascribing to labels or fixed political perspectives.

As Jorge and Patricia lay out in their intentions for this edition, looking at disability allows us to think about something which is part of everyone’s life. This edition follows a long tradition of theorising from experience and underlines the importance of doing that, as reflected in the title ‘The Voice of Many’. The conversations in this issue are part of an ongoing struggle to create space for marginalised people to talk about their experiences and to build a politics which is truly liberatory. Often when I do Disability Equality Training I talk to non-disabled people about what disability is and the impact of ableism. People are often surprised about the wide range of impairments and experiences which would classify someone as disabled. There is a realisation that “my cousin”, “my wife”, “my brother” would be classified as disabled. Sometimes we then go on to talk about the classification system and how inadequate it is, how it is used to categorise people as genuine and not genuine, deserving and undeserving. We might also then talk about the roots of human classification and how these stem from white supremacist assumptions about who is human and who is not. These racialised classifications have material effects and link into ableist categorisations that put conditions on whose lives are valued and supported. Towards the end of the discussion, I can sense a realisation of human connection but also of the enormity of the task at hand.

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A common response is: “Disability is a universal human experience; everybody should be treated equally”. But for me, this raises more questions than it answers: 1. Who is deciding on what is equal treatment? Is equal treatment all we want? 2. What about the systems we need to build to ensure everyone is safe, can thrive and not be perceived as “too much”? What about transforming society? 3. As people with impairments, long-term health conditions, who experience mental distress and/or are neurodivergent we all have different experiences. How our bodies are racialised and gendered also has an impact on these experiences, which cannot be separated from each other.

The dominant (white) disability movement has tried to craft an identity which erases the power dynamics at play within the constructions of ableism. This publication forms part of a long strand of intersectional theorising within disability studies and social movements. In 1992 Nasa Begum, writing in Feminist Review, wrote about how the experiences of black disabled women were not taken seriously by the feminist movement. In 2005 Ozzy Stuart, acknowledging the debt to feminists of colour, wrote about the tendency of the white-dominated movement and the social model to erase the effects of racism and the differing experiences of disabled people of colour. Talking from his own experience as a black man, Stuart writes about the “laws removing physical barriers might get me into buildings but once inside I will remain invisible” (Stuart, p.178). More recently Michelle Daly wrote a thank you letter to disabled women of colour, DISABLED PEOPLE: THE VOICE OF MANY. // 115


acknowledging some of the work that had gone before. I have learnt (and continue to learn) from Daly, Stuart, Begum, and many other disabled people of colour, about the many ways in which racism and ableism interlock. This includes the importance of white disabled people being vigilant in resisting the ways our whiteness protects us. As a white person born with an impairment I am often seen as innocent, special and in need of protection, but also to be kept separate in some ways, adding up to something like exceptionalism. So these two identities and experiences – of being white and disabled - twist together. This means that my place within the disability movement has always been assumed. My impairment (visible and more or less stable), my mostly middle-class background, education, secure citizenship all make me appear “genuine” and “deserving”. Consequently, the dominant disability movement, reflecting wider society, has fought for my needs. But what about those whose experiences and needs are not seen as acceptable, legitimate or deserving? What differences are being erased? Recognising difference is important, but for me, this is really about what we fight for and how we fight for each other’s needs and connect. For example as Rebekah Ubuntu’s contribution demonstrates, if it is not safe enough for somebody to identify as disabled, then this should not be the aim. Instead, we should aim for us to build a world together where everyone is safe enough, full stop. The title ‘The Voice of Many’ is an acknowledgement that we cannot build disability politics through erasure of difference but that we need to build connections within difference. Serena Katt’s review of Khairani Barokka’s play points out the impossibility of truly knowing another human’s experiences, and so for me part of the call to action is not to know but to connect in the face of isolation, and to create spaces to talk and be in as 116 // DISABLED PEOPLE: THE VOICE OF MANY.

much safety as possible, as well as doing the hard work of building coalitions. Life is made up of big and small acts; it may be obvious to say but yet it is important to acknowledge that those acts are made through relationships and the different connections we make with people. What is key is whether those relationships and those people are honoured and valued. For example, Annabel Crowley’s contribution details the skill of her work and how she holds people’s stories or bears witness to them. This makes me think about how important our stories are and how skilled the work of supporting and fighting for each other is and how our experiences give us those skills. In conversation, Elora Kadir talks about the value of her relationships with the Facilities Assistants in Central St Martins and how these services are devalued by the institution. Disability politics is about how we value ourselves and our relationships, building cultures of care in the face of segmentation and oppression. In this society, certain types of labour are valued and others are undervalued. For example, those who do the work of producing and reproducing infrastructures of care, those who work to make sure that things run smoothly (from people who collect the rubbish to people who clean and set up rooms in our universities) are all underrecognised and under-paid. What would the world be like if this type of labour was truly honoured? If people knew that they were more than their work and that they are amazing just because they live? Building cultures of care means focusing on ways we care for each other and recognising the different types of and extent of the labour we are expected and/or forced to do. For example, when Audre Lorde said that caring for herself was ‘self-preservation’ as well as ‘an act of political warfare’, she was speaking in relation to black women in particular, and the realities of an anti-


black world. The way that this quote gets taken up and appropriated to suggest that self-care is an equally radical and political act for anyone, including white people, detaches Lorde’s words from the struggle of anti-black racism. This reminds me that I will often need to explicitly de-prioritise my own comfort (sometimes confused with self-care) and support the self-care of others. It seems to me that access and cultures of care are inextricably linked together because they are both about how we create spaces to be together to talk about the things that matter (perhaps often things that don’t get talked about), to learn to listen to each other and to create relationships where we are valued, in order to change the dynamics of the society we live in. As Leah Lakshmi Piepzna-Samarasinha demonstrates in her book Care Work, accessible networks of care are not easy to build, as they do not automatically materialise from perceived shared experiences. Maybe sometimes we feel there is fragmentation, and it is important to work through the traumas we have faced in order to stay connected in a world that constantly asks that people split off from each other and ourselves. So those connections we make, where we can talk about subjects that are not easy or are not allowed, are part of counteracting isolation and understanding that as individual people we are whole and do not need curing. That experiences of illness and chronic pain can objectify and fragment us, constantly reinforcing to us the idea that we are broken. But Vilissa Thompson’s piece about Queen Sugar underlines the importance of seeing disabled black women as ‘whole’ and not giving in to the trope that disabled people are broken.

We are all part of webs of change and we need to build ways to care and support each other, which pull us together without erasing difference. If we take as a premise that none of us are broken and that the task is to build a world where it is possible for everybody to thrive, this takes us beyond inclusion into this society and into the realm of building another way of living, one which is focused on caring for each other and allowing us to be fully whole. REFERENCES Nasa Begum, “Disabled Women and the Feminist Agenda”, Feminist Review, 1992 (40: 70). Michelle Daley: http://www.daleymichelle. co.uk/thank-you-letter-to-british-blackdisabled-women-activist-and-campaigners/ Leah Lakshmi Peipzna-Samarasinha, Care Work: Dreaming Disability Justice, Vancouver: Arsenal Pulp Press, 2018. Ozzie Stuart, “Fear and Loathing in Front of a Mirror”, in Making Race Matter: Bodies, Space and Identity, ed. Claire Alexander and Caroline Knowles, Basingstoke: Palgrave Macmillan, 2005. nadsnuk.files.wordpress.com/2015/08/ reading-list-intersectional-disabilityand-disabled-women-v-01-2017.pdf www.sisofrida.org/resources/reading-listintersectional-disability-disabled-women/ Disabled Women: Facts and Stats Available from www.sisofrida.org/resources/ disabled-women-facts-and-stats-2/ Audre Lorde, ‘A Burst of Light. Essays by Audre Lorde’, Firebrand Books, 1998.

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WHEN GENDER, RACE AND DISABILITY COLLIDE.

SISTERS OF FRIDA, UK/US.

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Sisters of Frida CIC is an experimental collective of disabled women. We want a new way of sharing experiences, mutual support and relationships with different networks. We are seeking to build a/or different networks of disabled women. The barriers and multiple discrimination have not changed, we struggle to have our voices heard as disabled women in our own rights. We would like a sisterhood, a circle of disabled women to discuss, share experiences and explore intersectional possibilities.

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We took a long time deliberating on a name. We are disabled women but that is not our only identity â&#x20AC;&#x201C; we are also embracing the whole package of being women and disabled. And we believe strongly in the social model of disability. We want to celebrate the difference of being of different ethnic origins, different cultures and nationalities, of different sexual orientation, of being mums, having partners and being single women. We are creative and our creativeness is born from our identities â&#x20AC;&#x201C; of the very pain of being impaired and disabled at times. But we are not victims.


Article courtesy of Sisters of Frida and Elenor Linsey. This was the speech given by Eleanor Linsey at the WOW Festival on the Disability and Feminism panel. The title of this session is ‘resurgence of mainstream feminism ignores the voices of disabled women and discuss what happens when gender, race and disability collide’. I am going to start by saying that I am not sure we always allow ourselves to be ignored. Sisters of Frida was started when we realised that there was a noticeable absence of the voices of disabled women. One of the first things we did was to join the UK CEDAW workgroup and we went to Geneva so that we have a visible presence to challenge the government on their reforms with other women’s groups such as Southall Black Sisters. We were mostly self-funded but we saw that it is essential that disabled women are represented in processes like CEDAW reporting as too often our experience as disabled women is invisible, this is an opportunity to change this and show how the cuts and legal changes are affecting us. When it came to the turn of the shadow report for the CRPD, we realised we were the people with some experience as having been through the CEDAW shadow report process. And by the way, the United Kingdom has become the first country to face a high-level inquiry by the United Nations committee responsible for oversight of disability rights into charges of ‘grave or systematic violations’ of disabled people’s rights. However in the discourse of feminism,

disabled women are seldom included, it is true but even so, we are getting invited – we are here at WOW, but seriously, disabled people are often seen as a ‘burden’ on the feminist from before birth to the older parent often portrayed as with dementia. The decision of aborting a disabled child is seen to be totally understandable, disabled people need to be cared for – usually by low paid or unpaid carers where women sacrifice themselves as carers. Disabled women are also seen to be undateable. They are not deemed to be fit to be mothers, they worry about their children being taken into care, or not given custody of their children if there is a marital break up with a non-disabled partner. There was rejoicing of the series of amendments to the Serious Crime Bill, currently going through the House of Lords, and is expected to be on the statute books this year where under the terms of the Bill a person convicted of coercive control could face up to 14-years in prison and there will be no statutory time limit for the offences, meaning abuse dating back years can be taken into account. Good news for feminists but not so much of a cry when it was found that disabled women would be exempted. Partners of disabled women could avoid domestic abuse prosecution even after ‘coercive control’ is criminalised, the government added an amendment to the proposed law which creates a defence against charges of coercive control by people who take care of disabled partners. If they can convincingly argue that the actions they took were both in the best interests of DISABLED PEOPLE: THE VOICE OF MANY. // 119


“AS AN EAST ASIAN DISABLED WOMAN, I CAN FEEL THE CONFLICT AND AM PULLED IN DIFFERENT DIRECTIONS BY THE DIFFERENT IDENTITIES. WHEN I’M IN A DISABILITY ENVIRONMENT, WHICH IS STILL VERY WHITE-DOMINATED, I ASK FOR BLACK REPRESENTATION, WITH PEOPLE OF COLOUR, I ASK FOR ACCESS AND INCLUSION FOR DISABLED PEOPLE, WITH FEMINISTS, I ASK FOR THE SAME.” - Eleanor Lisney.

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their partners and “in all the circumstances reasonable”, they will not be prosecuted. There was a consultation but no disabled women/ people were asked. I am sometimes asked: is there a gendered difference in disability campaigning, surely we are all in it together. The division does not help, they say, and even disabled women tell me that. We should look for commonalities. I am not able to respond to that coherently. I think I am more able to respond when it has to do with social justice and the question of race but maybe because nobody has said to me let’s look for commonalities white people and black people both suffer from social justice, why insist on the differences. Certainly no black person. I would say because there are differences and we need to speak for disabled sisters because if we don’t who will? Last year I was fortunate enough to speak in the NAWO panel at the Global Summit to end violence against women in conflict – addressing gender equality as the root of all genderbased violence. I am reminded that women are raped, tortured and killed or left disabled because of their gender. If they survive many can’t go back into society because of the stigma of having been raped, on top of being disabled. There is a gender difference. As an East Asian disabled woman, I can feel the conflict and am pulled in different directions by the different identities. When I’m in a disability environment, which is still very white-dominated, I ask for black representation, with people of colour, I ask for access and inclusion for disabled people, with feminists, I ask for the same.

REFERENCES Citation: Lisney, E. (n.d.). Eleanor Lisney: ‘when gender, race and disability collide’. [online] Sisters of Frida. Available at: www. sisofrida.org/eleanor-lisney-when-gender-raceand-disability-collide/[Accessed 23 Aug. 2019].

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– Eleanor Lisney

DISABLED PEOPLE: THE VOICE OF MANY. // 121


WHAT DOES IT MEAN TO BE A DISABLED ‘DISABILITY PRACTITIONER’?

ANNABEL CROWLEY, SOAS/UAL UK.

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Annabel Crowley is a higher education professional with a decade of experience in supporting and facilitating access to Further and Higher Education for disabled students. Her current role focuses on strategic Equality, Diversity and Inclusion/ Organisational Development interventions to policies, processes and institutional culture in the area of staff access and inclusion. She is also co-chair of UAL’s Group for the Equality of Minority Staff (GEMS), a staff network representing employees and workers of colour. 122 // DISABLED PEOPLE: THE VOICE OF MANY.

In previous roles, she has managed projects for disabled people-led organisations in London, with a focus on self-advocacy, campaigning and consultation with local authorities. Her research interests are in critical pedagogy and inclusive learning and teaching practices. Her current research is design-based, aiming to build spaces for cultures of neurodivergence to flourish. I also teach in arts HE, specialising in inclusive practice.


Writing this piece has been a challenge because I have long struggled to talk about what I do for a living. Currently, my long answer is “I’m a specialist in facilitating access and inclusion for disabled employees” and my short answer is “I work in disability and mental health”. The stock response I receive goes something like, “Wow, that must be SO rewarding!” These conversations frustrate me because they tend to pivot around oppressive assumptions that I do this work because I am a do-gooder for humanity. That disabled people are objects of sympathy or pity. I rarely encounter assumptions that I am skilled in doing this work. That I am skilled in doing it because I am disabled and have been (and continue to be) on the other side of the very same support I provide to others. That I started my training in childhood, caring for one of my parents, before starting my professional career. This is skilled work that should go beyond compassion or empathy or doing good. This is work to which I have dedicated most of my life because I want to get better at it and to be present and visible in this field as a disabled person. The language of disability is another challenge. There are so many words in this field that are crucial to my practice and to my existence that I rarely use outside of work or beyond my friends and loved ones. I often find this language inadequate to describe what’s really happening, even though it is in common use in my field.

An ‘adjustment’, for example, implies that overall our environments are good enough and that they require only minor or ‘reasonable’ adjustment to truly welcome and enable a person who would otherwise be disabled. ‘Adjustment’ places the burden on disabled people to know how to navigate complex processes or even to know what is ‘reasonable’ as defined by the Equality Act 2010. The word ‘reasonable’ is hugely loaded in itself – it has a legal definition, but its opposite, unreasonable, implies that disabled people’s requirements for access and inclusion can go beyond the limits of acceptability. The conditions we truly need to thrive can be (and often are) unacceptable. We can be (and often are) unacceptable. Underpinning and woven through all of this is what I know from the hundreds of people I have worked with. There are complex and intersecting factors that make our experiences of disability vary so widely. Ethnic minorities are at higher risk of developing mental illhealth, perhaps linked to the trauma of racism on global, societal and local levels. Mental health services are immensely difficult to access in the age of austerity in the UK. Those of us who are ‘lucky’ enough to access them still experience discrimination in those services and – especially amongst people racialised as Black – remain statistically more likely to be detained under the Mental Health Act. People who are LGBTQ+, and particularly trans people, are more likely to experience inequality of healthcare provision.

DISABLED PEOPLE: THE VOICE OF MANY. // 123


“I THINK FOR ME, BEING DYSLEXIC AND STRUGGLING WITH THE READING SIDE OF MY WORK IT IS GOOD TO SEE THE TESTIMONIES AND ACTUALLY TO HEAR THE EXPERIENCES OF [ALL SORTS OF INDIVIDUALS] IN WHATEVER FORMAT [WHICH] IS (...) REALLY VALUABLE FOR A LOT OF PEOPLE…” - Anonymous, UK Black Professor.

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This is the kind of sensitive knowledge I must carry with me in every conversation I have about disability. I think now of all the conversations I have had in my work. Those that I hold in my mind alone, having promised not to share the details further. Those in which I have negotiated next steps, working with individuals to understand what they are willing to disclose in order to access further support or resources. Those in which I have mainly listened because acting as a witness to someone was what they needed at a time when they felt helpless and isolated. A core part of my work has always been acting as a supportive mirror, reflecting an individual’s experience back to them as though to say, ‘What you are telling me is real.’ To me, these conversations should form the basic level of support we offer to disabled people at work. I have needed these conversations, so I am reminded that being treated as a nuisance in a given environment does not actually make me a nuisance.

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issuu.com/teachingwithinson/docs/teaching_ within_prospectus_2018_dig

I work towards the day when I can design environments myself, free(r) from the bureaucratic limitations of institutions and beyond the inadequate boundaries of legal compliance. This desire is at the core of my current research – the desire to imagine spaces where we can express ourselves, bear witness to ourselves, and really harness our beauty and creativity in the endless forms they can take. Until then, I will probably be tired but still committed to giving what I can because if I and others like me are not here, then who will be?

DISABLED PEOPLE: THE VOICE OF MANY. // 125


I KNOW IT’S EASIER FOR YOU.

NATALIE E. ILLUM, USA.

Natalie E. Illum is a poet, disability activist and singer living in Washington DC. She is a three-time recipient of the arts and humanities fellowship from the DC Commission, and a 2019 Pushcart prize, Best of the Net, and Best New Poet nominee. She was a founding board member of mothertongue, a LGBTQA open mic that lasted 15 years. She competed in the National Poetry Slam circuit and was the 2013 Beltway Grand Slam Champion. She has an MFA from American University. You can find her on Instagram and Twitter as @poetryrox, and as one half of All Her Muses, whose debut album will be released in 2020.

I know it’s easier for you if I’d just let someone carry me up the 4 steps. Easier for chivalry to lift a body then watch my feet scrape over the bricks, how my hands search for the missing railing. Easier if her allergens would keep to themselves. God forbid you have to be mindful of dairy or cross contamination. Of strobe lights or fragrance. God forbid you ever worry about the size and symbols of a bathroom stall. If what some call “helpful” would get your staring, slack-jawed excuses to quiet, then at best it earns you my side eye; perhaps a verbal slap from the “community.” At worst, the bar fight of my patience against your ignorance. Why do you insist you are an ally, when your best attempt is a sign that says Don’t trip the artist. Remember she has trouble getting back up, and we don’t want to be liable for any type of seizure. Don’t feed the artist. If she swells up and chokes, we couldn’t call it stage fright. Wasn’t that creative? How I didn’t even “out” them, how I glossed up the shame.

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IN CONVERSATION WITH THE TRIPLE CRIPPLES.

SHADES OF NOIR, UK.

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Shades of Noir Sat down with Olajumoke ‘Jay’ Abdullah and Kym Oliver from The Triple Cripples.

We would like to thank Olajumoke Abdullah and Kym Oliver for taking the time to speak with us.

The Triple Cripples is intended to be a platform that highlights the narratives of Black and non-Black Women, Femmes and Non-Binary People of Colour, living with disabilities. Originating following a conversation between founders Kym & Jay, together they discuss the lack of representation and visibility of disabled Black women and femmes who are extraordinary members of their individual societies.

Please visit our website to view the full interview.

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To find out more about The Triple Cripples, please use the following: Twitter & Instagram: @TripleCripples Website - thetriplecripples.uk/ Instagram - www.instagram.com/triplecripples YouTube & Facebook: THE TRIPLE CRIPPLES


If we dive straight in, it would be good for you both to individually explain who you are, how you introduce yourself and just give a bit more about your origin story and how you found your way to the work that you’re doing. JA: My name is Olajumoke ‘Jay’ Abdullah of The Triple Cripples and one of two cofounders. What motivated me to at least be part of a creation of triple cripples was for the longest time because I’ve been disabled for essentially all of my life there was no such representation. So there was some representation for me as a woman, some representation for me as a black person and there was some representation in terms of disability. But looking specifically at disability, it was always white and more often than not, it was male and for me, there never seemed to be anywhere in any media landscape, be it on television, films, music, advertising, etc. that I saw somebody that lived life as I did and being a child that was essentially raised on media like I consumed a lot of that and there always seems to be like this Akuna or this ‘gap’ where it seems like a lot of people that live life the way that I did fell through. Now as a child, I obviously didn’t have the language to express that, but they just seemed to always be something missing, something lacking. And I couldn’t quite put my finger on what it was. And no matter how much I enjoyed what I was seeing, what I was reading, that always seemed to be this little piece, this little nugget missing. Having studied media, I came to realise what that actually was and for a long time, I had been thinking of creating something like The Triple Cripples, but I never wanted to do it by myself. So it was serendipitous, shall we say, that I happened upon Kym in a very non-stalker-ish fashion - just before she spoke soon following I was like, ‘okay, guess this is something that I’ve always wanted to do’. Because she is not the only person who is disabled - like millions of people are disabled.

I think maybe up to 11 billion people around the world have some form of disability, but getting the cultural nuances in there as well feels so necessary and was very important for me. So creating The Triple Cripples as a reference point was always important necessarily because I didn’t want those coming after to do all of that work or negating feelings that they might not be able to quite put their finger on. It’s like there’s something missing, but I don’t know what it is and just trying to continue the work that has been created by those before us and making it very intentional and very specific to people that live life the way that we do because racism, ableism, sexism, it’s everywhere and the is racism in the disability community. Making sure that those who live a life as I do know that ‘yes, there is a larger disability community’, but there is a space within The Triple Cripples where you are centred and by ‘you’ we are targeted an audience who we’re trying to speak to and whose voices were trying to use our platforms to elevate and it’s not an afterthought. KO: Awesome. So I’m Kym Oliver and I am a co-founder of The Triple Cripples. I made this baby with Jay and we’ve been co carrying the baby for a while. So before I encountered Olajumoke unlike her, I wasn’t born with a disability. I’d been disability adjacent at some points in my life, but disability was very much not in my realm of consciousness or understanding even. Perhaps there were parts of my life where I interacted with people who are disabled but even the terminology in that sense wasn’t part of my lexicon because I never had to use it, and this is someone who works in Inclusive Theater and I don’t ever remember using the word disability. But at the same time, there was something about the whole environment that I was intrinsically uncomfortable with, and it could have been a whole host of reasons, but it’s something that when I left, I never had to DISABLED PEOPLE: THE VOICE OF MANY. // 129


think about it again cause I wasn’t working there. Right? So suddenly at 25 years-old I’m thrust into a position where my body starts revolting against me and I don’t have a language for it. I don’t have a reference point. I don’t know what is happening, but also no one around me has language for it. No one around me has a reference point to provide me with, and everyone around me becomes alien in the way that they interact with me in the way that they speak to me. The world around me becomes alien because I can no longer interact in the way I used to, and my community - as in the black community - that I was very much part of in a lot of ways or had access to suddenly became somewhere that I was not welcome and for me, it was a very isolating experience. So I, at first I mourned it and I kind of accepted that, you know, I was a second class black citizen. I internalised a lot of the kind of ableism that I picked up and that’s the thing about it, ableism is something much like racism that you are taught, you are taught through your interactions. You’re taught through the things you don’t see, as well as the things you see, the things that aren’t said as well as the things that are said. And so a lot of those things became directed towards myself. You spoke about some of the questions that you’re trying to answer within your work in terms of your shared goals, can you speak more explicitly about that? JA: These are questions that have only really and truly existed in teeny, tiny, small little nuggets. So for us, while it is, don’t get me wrong, like it is absolutely all change and so necessary for a number of different communities. In the queer community, for example, there have been discussions. There’s been talk and yes there has been pushed back. You know, like the world is still homophobic. The world is still transphobic and all of 130 // DISABLED PEOPLE: THE VOICE OF MANY.

that stuff. But discussions have been had on very big platforms. Now, if we’re looking at the world, and we think of it in a purely economic sense because that’s what moves the weld around. Cash rules everything around me. Companies, businesses, organisations have realised that regardless of their own individual personal feelings, the pink pound, for lack of a better world, or the pink dollar is something that is very valuable and highly sought after. So for a lot of people and for a lot of reasons if you are not going to respect me and mine, be it through race, through sexuality orientation or whatever we’re going to take our money elsewhere. Now, this is what really tells you that disabled people aren’t really valued as highly. So for me, in the creation of The Triple Cripples, it’s not so much trying to answer a question, but just trying to pose a statement or say ‘we are here, we have always been here’, and in us trying to create a living archive is just kind of like ‘here is all the proof. This has always been true. KO: Just to add to Jumoke’s point, she said that, you know, they’re not trying to quote disabled people at all. And a fair point to note is that disabled disability intersects across all the cross-sections of humanity. You can be disabled and queer, you can be disabled and male, you can be disabled and female. You can be disabled and trans, you can be disabled, queer, black and trans. Like you can be everything and disabled at the same time. So it is actually quite poor legislatively, architecturally, socially, whatever you want to call it, economically to ignore this core group of people that actually are part of what makes the world that is a major minority in a sense. But within that major-minority (a majority-minority or minority-majority area is a term used to refer to a subdivision in which one or more racial and/or ethnic minorities (relative to the whole country’s population) make up a majority of the local population.), there is this group that often


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isn’t raised even within that conversation. And the thing is, one of the things that we always stress is that Black and Brown people are the world majority. We’re not a minority. We’re a minority in the West. But in these kinds of European and American contexts, but in a world where you are a majority then if you were trying to understand disability in a global sense, there are more disabled black and Brown people then there are disabled, non-black and Brown people. That is a huge majority. If we are trying to create a better world, then we need to create a better world for the people who are most vulnerable. I don’t use the term ‘in need’ as in pitiable no, I mean ‘who socially, economically should be at the centre of our thoughts?’ We should be creating a world that makes sure that they have an equitable experience because that will mean automatically that everyone is catered for. If I make sure that the most vulnerable person is catered for in a way that

empowers them and allows them access to their community, to education, to economics, to career, to fulfilment, and all those forms of self-actualisation then nobody else can fall through the gaps. It automatically guarantees a better society with more efficient ways of governing, more efficient ways of working out policy and legislation and structures. Everything automatically becomes more efficient and more inclusive. JA: Kym for President! *Laughs* I guess then reflecting on what you both have said about how TC poses a challenge, are there any particular kind of resistant moments that you both have had in terms of building the brand and creating a platform that highlights the lives of disabled people of colour that springs to mind? JA: I guess one that we’ve not often, but DISABLED PEOPLE: THE VOICE OF MANY. // 131


has cropped up before is our name - Triple Crippled. So, historically cripple has been used as a slur for the disability community and so it was used to reference the odd disabled older, or just those who lived life slightly differently to the existing hegemony, wherever that may be. I think it was during an interview actually that Kym had rightly said that as black people, we are also crippled by living within this racist society. It’s a way of hindering or impeding people. Is it not? So for us, it’s unfortunately threefold, which is why we are The Triple Cripples through the intersection of race, gender, and disability. But for us it was, it was not a way to reclaim the word. There was never going to be any reclamation, but it’s just to not necessarily shock people, but to get them thinking and to get them talking. Because for many people, if the name wasn’t The Triple Cripples, if it was ‘by and for disabled black women,’ or for disabled women of colour, nonbinary POC’, et cetera, then it’s like, ‘Oh, I’m not bothered.’ KO: I mean you can even use COVID-19 as an example of that as we’re not able to access essential things, socially, isolating already. And now I can’t get the basic things that I need to live day to day and now they’re having screens where you choose this one meagre hour that they (carers, those who are ‘high risk’) can go to the shops and might be able to find something. But what if their carers can’t come at that time. What if, you know, their carer gets sick? What happens to them in this? JA: As Kym rightly points it out, you can pick any example, at any point. And it’s like the same will always be true. Like I recently saw on the news, people asking how are they supposed to live on ninety-four pounds a week? Well, disabled people have been telling you all that it’s not doable, but now because it’s affecting you now it’s an issue. All these, let’s say, reasonable adjustments were unreasonable before people were having to work from home. Trying to say, actually, can I have flexible working hours? Can I do this? 132 // DISABLED PEOPLE: THE VOICE OF MANY.

It’s unreasonable. It’s unreasonable because it’s you. But now that it’s affecting those that live life non-disabled, now all of a sudden I can move heaven on earth. So these things have always been possible. It’s just you didn’t want to do it for me. Now consider this, they didn’t want to do it for the white disabled community so people like me and Kym who are already seen as scroungers trying to take what they can from the States, you know? So it’s bringing up a lot of questions and making a lot of people feel uncomfortable. Like, I can’t believe you’ve been living like this for so long. But as is always true with anything, I don’t care about that until it affects me. So for us, we get TC rules to make people feel uncomfortable. So how does that make you feel? There’s something, this is a challenge to you. KO: They’re not considered to be ‘whole’ so how many more people who have been previously dehumanised and seen as less than human and seen and treated like cattle, like animals. It doesn’t take much for you to reach a place where someone is calling you a monkey. As black disabled people, if white disabled people aren’t considered as whole human beings and not enough to make educational adjustments, social adjustments, all of these things such as work from home, you know, change the hours, making things more flexible, making things more accessible then what about us? And so it’s essentially important. It’s very important for us to challenge those things by being exactly what we are truly crippled, there you go. That’s the thing that’s really nuanced about race relations. Sometimes it doesn’t come as someone beating you up, calling you in N-word and chucking you in jail. Sometimes it does come as someone making you the token because when people make you the token, it means that no one else can ever get through that door because they’ve made it. They’ve, they’ve closed the door and locked it


“THAT’S THE THING THAT’S REALLY NUANCED ABOUT RACE RELATIONS. SOMETIMES IT DOESN’T COME AS SOMEONE BEATING YOU UP, CALLING YOU IN N WORDS AND CHUCKING YOU IN JAIL. SOMETIMES IT DOES COME AS SOMEONE MAKING YOU THE TOKEN BECAUSE WHEN PEOPLE MAKE YOU THE TOKEN, IT MEANS THAT NO ONE ELSE CAN EVER GET THROUGH THAT DOOR BECAUSE THEY’VE MADE IT. THEY’VE, THEY’VE CLOSED THE DOOR AND LOCKED IT... BECAUSE EXCEPTIONALISM KILLS REPRESENTATION IN A LOT OF WAYS. EXCEPTIONALISM KILLS. ” - Kym Oliver.

DISABLED PEOPLE: THE VOICE OF MANY. // 133


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now because, ‘Oh, no I’m perfect. Look, here’s my token. I never need to change anything.’ Do you know? And that’s the danger of some of the things that at least we’ve witnessed and we wouldn’t want that to be the case. We don’t stand for that anyway, which is why whenever we get an opportunity, we pull in disabled friends to be part of what we’re doing whenever we have an opportunity. And it’s also why we are starting to create a living archive to document the lives, existence and experiences of every person of colour with disabilities who is a woman from a non-binary person across the spectrum because exceptionalism kills representation in a lot of ways. Exceptionalism kills. But at the same time, we do our best to challenge that. And I think being disabled allows us to do that anyway because we’re not socially acceptable in that way. And a lot of people are still challenged by our presence. Just the mere fact that we exist in 134 // DISABLED PEOPLE: THE VOICE OF MANY.

plain sight is a problem for a lot of people. Like we still get people telling us, ‘no, don’t call yourself disabled’ regardless of watching all of our videos or coming or seeing us in certain places. As in, ‘no, no, no. Don’t call yourself that. Don’t call yourself that.’ It’s a continuous kind of walk and I think as we continue we will only encounter more things. So in terms of combating resistance then, are you very vocal if you feel that someone is being quite deliberately resistant or tokenistic in their behaviours towards you, and how would you actually in the moment deal with that? KO: We weave it into our lectures and our talks. The thing about us, and I think in some ways our disability allows this, is that we are very straightforward. We spit straight facts. Like we don’t mince our words. And the reason I say I dispute as he allows it is because a lot of the time people


when you speak, cause it’s the same person anyway. So it’s like we get to say the things that perhaps other black people in our position wouldn’t feel comfortable to say for fear of loss of position, for fear of loss of opportunity, as we have literally nothing left to lose. We are at the bottom of the ladder. JA: Following on from what Kym says, nothing that has been necessary, no fault of civil rights be it a disability, black, human, et cetera, has ever been won by those at the top deciding ‘actually let me do the right thing.’ People have and will need to continue to literally put their bodies on the line because you’re not going to respectability politics your way to getting what you actually need and what your community actually needs. I, as the oppressor, I as the one at the top, I will fight you tooth and nail until I’m not able to do so and you need to use all weapons in your arsenal. You need to use shame, you need to use community, you need to use your numbers because we outnumbered them. But we can be in these spaces of these institutions that are known globally, and that allow that to be the place where we are not telling the truth, and allow that to be the place where we’re trying to make you feel comfortable. So where then do you situate yourself, if at all, in the disability cannon? JA: In terms of what I feel that I fit, I feel that we do need The Medical Model, but we also need The Social Model. But for me, I would put a lot less emphasis on The Medical Model, just purely because The Medical Model gives us a medical description. So for me, I contracted poliomyelitis (also known as polio - an infectious viral disease that affects the central nervous system and can cause temporary or permanent paralysis) so you say that to a doctor and ‘okay, I presume that your life or your body specifically has been affected in a number of these ways because these are the certain characteristics of somebody that has polio. It might affect one of your four limbs. It might cause you

respiratory issues’, or unfortunately, polio was known back in the day as the baby killer, and so many young children died. So I don’t think we can completely do away with The Medical Model because yes, you are being disabled by your environment not being accessible, but within yourself (yourself) I still am disabled. There are certain aspects of my body and my lived experience that cannot be completely explained by The social Model. I think for me, we need both, but I would put a lot more emphasis on The Social Model. So let’s say 20/80 favouring The Social Model because I feel that regardless of your disability - and this is where we’ll need people to be a lot more creative and think outside of the box - as in what accessibility means for somebody that has an invisible disability or somebody that has a physical disability, something or learning difficulty et cetera - but that is definitely something that also puts the onus upon the greater society and the powers that be, those that are policymakers, politicians and people that have the power to make the world as accessible as possible because there’s only so much as an individual one can do. KO: I think we do fit in within The Radical Model of Disability because it does take into account intersectionality and it doesn’t do away with the idea of the social framework for disability. But it takes it further in the sense that it says much like what we were saying about the political element of disability and what that means for society to have people that are haves and have-nots, how that affects the economy, how that develops collective consciousness and culture and all those things. I think it takes some of that into account as well. However, the issue that I always have with these models is that often we get really caught up in categorising ourselves. We get really caught up in that but there’s no point of a model if there’s no efficacy, right? So we could call ourselves, Radical Model Disability Activists all day, but if we weren’t DISABLED PEOPLE: THE VOICE OF MANY. // 135


living that life, if we weren’t practising it, then it wouldn’t mean anything. I still think there is a place for understanding disability through the models, though I think one of the key factors of The Radical Model is the abandonment of the idea; of having a disability means that you’re impaired. And then other groups distanced themselves from the disability because of what it would mean in terms of superiority or removing themselves from the inferiority of having a disability or impairment. And one of the things that The Radical Model centres is saying that you know, I just am right. I just am another human being in a different iteration. And that doesn’t make me less than and I think that’s one of the reasons why the TC exists in saying that we are here, we’ve always been here. We are just a different iteration of human life. And especially within African cultures, that’s one of the things that we try really hard to talk about is that look we’re just living life in a different way. Our human body is expressing in a different way to what you are normally able to encounter, some of the things that you discriminate against. You discriminate against them because you can see, but if you were to look inside everybody’s body, we all express our humanity; the human form is expressed in a multitude of ways. So, I guess reflecting on what you previously spoke about, are there any writers or artists or theories that influenced the work you do, especially within your talks and your lectures? KO: I talk a lot, but Jumoke is one of the most thought-provoking people I think I have ever encountered in the way she digests information and kind of summarises the world around her and also her lived experience. And she’s a veteran in terms of understanding the social climate of disability as a black woman. Also, the circles that she’s moved in, the places that she’s had a seat at the table as like, and so been privy to certain conversations and understandings that go beyond what a layman would have. 136 // DISABLED PEOPLE: THE VOICE OF MANY.

Not all heroes wear capes, but you know, she’s definitely one of my heroes in terms of even the way she sometimes challenges my thought process and the way I think, and it brings things to my attention. I think someone else that is quite good at challenging and making you question things is Ericka Hart. She’s very challenging at times. I’m thinking, Audre Lorde, who has written really extensively about sexuality in terms of it being a weapon that can be used by women and understanding how women have been de weaponised by patriarchy, by men. There are lots of people that I’ve read - Toni Morrison, people don’t necessarily mention Walter Rodney, Frantz Fanon and like all of those people. There are things that they’ve said that you may not agree with all of it, but there are things that they’ve said that have expanded my thinking. Dr. Llaila Afrika is hilarious, but have really helped me kind of understand something else that I’m going through, may he rest in peace. And the thing about Chimamanda (Ngozi Adichie - author of the 2014 best seller ‘We Should all be Feminists) you know there are so many of us for me to quote. I know Vilessa Thompson and the work that she does is fantastic. And actually, do you know who I personally met who actually blew my mind as well - Michelle Daley. We had a panel discussion with her, our first Black Girl Fest we did a talk and I sat in and Michelle spoke. I don’t know, she didn’t speak for more than 15 minutes, but in that 15 minutes my whole thought process was revolutionised - like the wealth of knowledge and expertise and kind of understanding within her was mind-blowing. And I think that’s also important for us to kind of listen to our elders and honour them as well, who are living the experience, who have lived the experience. Yeah.


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“AND IF WE SAY WE WANT TO CHANGE THE WORLD, IF WE SAY WE’RE TRYING TO CREATE A WORLD WHERE THERE’S EQUITY FOR PEOPLE OF COLOUR, FOR BLACK PEOPLE, THEN WE NEED TO HAVE A COLLECTIVE CONSCIOUSNESS.” - Kym Oliver.

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JA: Agreed. I’ve definitely learned a lot from Kymberly (Oliver) to give her full name. I say this all of the time owing to meeting Kym and obviously very quickly us co-founding The Triple Cripples. As Kym rightly said, I’ve been a veteran in disability for a very, very, very long time but it was usually just me by myself. I always shrunk away from that part of myself. But I’ll also add, bless her soul, Maya Angelou who was pretty honest with that part of her life and just to remind us of the parts of our lives and the parts of ourselves that we have been told are not good, are bad, that we should be ashamed of and it’s what has made us who we are. So to live our truth in all facets that it may be. KO: Hmm. Emma Dabiri covered that in her talk at the WOW Festival about a book. In ‘Don’t Touch my Hair’ she covered the fact that black people, in every iteration, have been told everything about us is wrong. Even the process through which we reiterate ‘Oh, you know, my hair takes too long because blah, blah, blah…’ And you don’t realise that the idea of a part of you not being deserved time or being resentful of the time that you have to spend on a part of you that is just the way it is deeper than just ‘Oh, you know, I’m stuck for time because of capitalism…’ Capitalism feeds into anti-blackness in that way. So you expressed this previously ‘be the change that you want to see’ and I just wanted to see if you could expand on that a little bit more? JA: So for us, it’s not enough that we all are talking ‘the talk’, but being about it but obviously this isn’t something that we’re going to publicise. Stay true to when nobody’s watching. Nobody’s listening, nobody’s looking. Your message has to be the same all the way throughout because you cannot try to tell us that you should have done that. Now, this isn’t to say that people don’t make mistakes and obviously hindsight is 2020 but these are the things that you will remember

because at some point or another it’s going to catch up with you because it always does. So we tried to stay true to ourselves and true to what we’re trying to do and if that is any disagreement like it’s something that we’ll always talk about. I think that’s what has helped us continue so well for so long. So I think that that’s really, really important. KO: And, you know, as they say, the ‘path is laid with good intentions’. And I would add for compromise, it’s so easy. You start with one little compromise and you’re like ‘Oh no, just be this one’ and then you stop and then you carry on, and then the next thing, bit by bit, many drops of water make a mighty ocean. And, I think that’s the other thing, that means that what you do will have longevity, but also that you’re being part of the change that you want to see. You want to see people not making those compromises. Not making compromises for small change. Money is transient. It comes and it goes. We are here. We will always be here. And if we say we want to change the world, if we say we’re trying to create a world where there’s equity for people of colour, for black people, then we have to have a collective consciousness. We cannot afford to compromise on those things or to not be the change we want to see because you might say, ‘okay, it’s just to me, you know, I am a Legion of people. My life affects others. So I guess that leads me on to my final question to kind round off this interview. What are some of the things that you’ve learned in organising The Triple Cripples, and what advice would you give to those wanting to do the same, or maybe advice to your younger selves when you were starting out? JA: For those looking to do the same, I would say first, don’t look to do the same. They’re not going to be able to do the same because the TC is very specific to Kym and I. It’s specific to our experiences, owing to our backgrounds and our histories. I would DISABLED PEOPLE: THE VOICE OF MANY. // 139


say start from where you’re at. So I always say this to Kym, but ‘perfect is the enemy of good’. Don’t wait until things are super sparkly and shiny and just exactly the way you want it. You’re not going to be able to do anything for anyone, including yourself. If you are doing something that you believe in and you know it will have a positive impact on not only yourself but those around you, then start from where you’re at. Consider your networks as well. Also allow yourself to make mistakes because you will make mistakes along the way and that’s how you learn. That’s how you grow. And have fun. KO: Yeah. I would say if someone wanted to start their own thing, be authentic. There is no fake business in the world. Like, be authentic. Your authenticity is the key to your success in a lot of ways, and people being appreciative of what you have because that comes through in everything you do; your authentic self. And if you don’t know what your authentic self is, find it, you know? Also don’t put too much pressure on yourself. Do what you can according to what you can do when you can do it, and be satisfied and happy with that and learn to celebrate your small wins - you did 10 minutes today. Fantastic. Celebrate, relax yourself. Treat yourself. You’ve like life is hard enough. Like you don’t need to be beating yourself up constantly, especially for something that you want to do that is supposed to be pleasurable as opposed to feeding you. It’s a learning process. KO: What about for younger Jumoke? What would you say?

JA: For younger Jumoke, I don’t know. I would say don’t get so bogged down by those around you. I think I would have tried to do that a lot sooner because I was always proud of being Nigeria and I was proud of being Uruba. I would have let that shine through like a lot quicker and not let the ‘Daves’ and Paula’s of the world try to make my heritage and my culture seem less than. KO: I would say to younger Kym is to be present in her moments. I was very concerned with ‘the perfect outcome’ and my imperfections. I was very focused on my imperfections. So much so that it often stifled my progress in my creativity and also my development. I was so concerned with all these flaws that were placed upon me by not just by being a big black child, in a world of whiteness that was so small. Blackness is huge, right? It can’t fit into this small world, this small, white world, and that’s okay. And that in itself, like that juxtaposition. I wish that I had understood this earlier. And so by living in the moment, I have been able to embrace the things that were wonderful around me. But what I do think is that little Kym needed joy and the fulfilment and the peace that comes from being able to see your reality as opposed to the anxiety and the trauma that comes from constantly looking towards a future that you can’t define and constantly trying to pick apart what you think is wrong with your present. So yeah, I would just definitely say to live and embrace the moment; to live in the moments and to be satisfied with those moments. Interview by Rayvenn Shaleigha D’Clark Please visit shadesofnoir.org.uk/ to view the full interview.

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“YOU DID 10 MINUTES TODAY. FANTASTIC. CELEBRATE, RELAX YOURSELF. TREAT YOURSELF. YOU’VE LIKE LIFE IS HARD ENOUGH. LIKE YOU DON’T NEED TO BE BEATING YOURSELF UP CONSTANTLY, ESPECIALLY FOR SOMETHING THAT YOU WANT TO DO THAT IS SUPPOSED TO BE PLEASURABLE AS OPPOSED TO FEEDING YOU.” - Kym Oliver.

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IN PRAISE OF SHEWOLVES. ZULEIKA LEBOW. Image 42 142 // DISABLED PEOPLE: THE VOICE OF MANY.


Zuleika Lebow is an artist and community builder born and raised in London. Her work is centred around themes of identity, race, the sick body and lexicon via sculpture, photography and writing. Lebow interrogates the politics of representation and marginalisation in accessible, playful and convivial ways that generate alliances; recognising knowledge and culture as an inherently diverse, shared resource. Utilising philosophical texts, popular culture, sci-fi and esoterica as starting points, she creates spaces, events and artworks which facilitate a different approach to discussions of class, race, gender and language.

How Embracing My Inner Werewolf Helped Me To Cope With My Chronic Illness. Congratulations, it’s a Werewolf! The Shewolf in me was born in August 2012. I had already been diagnosed earlier that same year with an underactive thyroid (Hypothyroidism) and perpetual anaemia due to sickle cell trait. Much later I was told that it was common for autoimmune diseases to ‘travel in packs’, no one knows why yet. Solidarity, I guess? Hard to be a disease wreaking havoc on a body all by yourself (even apocalyptic horsemen have friends). I had just turned 22, finishing my first year studying Fine Art at Middlesex University in a haze of pain and trips to A&E. I remember receiving my Lupus diagnosis, collapsed in a chair, shivering with a fever, my hands and feet so swollen they looked like claws and saying “So….I’m a werewolf then?!” Systemic Lupus Erythematosus (SLE) or Lupus, is an autoimmune disease where the immune system mistakenly attacks healthy tissues of the body. It is more common in women, particularly those of African, Caribbean, Chinese or Polynesian descent. Bad news for me as a mixed-race woman of European Jewish and Jamaican descent. It can affect everything, causing fatigue, painful rashes, hair loss, photosensitivity, sun allergy, kidney and liver failure, nerve damage, aphasia, anxiety, depression and joint swelling. Adding insult to injury, it takes on average 6.5 years for people with Lupus to receive a diagnosis. This is partially due to Lupus masquerading as other diseases, but medicalised racism and ideas about “hysterical” women play a huge part in the battle for proper diagnosis and testing. It took me around nine months, and that was long enough. Add to all this the side effects of cocktails of immunosuppressive drugs, many of them based on cancer treatments, and you have a recipe for a human who is often bone achingly tired.* DISABLED PEOPLE: THE VOICE OF MANY. // 143


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Nobody knows why Lupus, meaning “wolf” in Latin, is called Lupus. Theories abound, the prevailing one being that the lupus vulgaris or “butterfly” rash some patients get across the nose and cheeks was thought to resemble a wolf’s bite. This feeds into my own idea: SLE is an illness which primarily affects women and a link between oestrogen and the disease is well known (Khan and Ahmed, 2016). It is likely that women kept track of their menstrual cycle using the moon, and may have even noted an exacerbation of Lupus symptoms around this time. Given that wolves and the lunar cycle are already intertwined in the mythological collective consciousness of the West, I can see how early doctors connected the dots. So, this horror fan decided to turn the name on its head. A strong believer using humour to alchemize pain, I began making werewolf jokes. My clawed hands and feet became my paws, my air falling out was me moulting, preparing to shapeshift. I found that it was easier for me to contextualise my experience for friends and family by sending them clips from lycanthrope horror flicks, the one from An American Werewolf in London (Landis 1981) being a particular favourite, rather than explaining it over and over. I now knew what it was like to live with a volatile creature beneath my skin which I could neither control nor predict. I too was in skin-splitting agony both mentally and physically, attempting to come to terms with the temperamental nature of the disease I would now live with for the rest of my life. The wolf in my veins was ready 146 // DISABLED PEOPLE: THE VOICE OF MANY.

to strike at any moment, always watchful, always there. There is no cure for Lupus. The symbol for many Lupus charities is a purple butterfly - is anything I have described compatible with that innocuous image? Symbolising visceral, scary illnesses which affect women with benign defenceless creatures or ribbons in pretty colours contributes directly to the sanitization and erasure that regularly takes place when disability or illness are discussed. Making illness more palatable for non-disabled people. But what about the direct-lived experiences of sick people? We deserve to be seen and have our pain acknowledged in the emblems chosen to represent us.


The Shewolf Diaries It took me a long time to speak out about my journey with Lupus. My desire to share my story was hampered by the thought that I may be considered “an attention seeker” for talking about it. Who wants to hear about the pain and struggle all the time? After joining Instagram as @shewolfdiaries and seeing the amazing community of sick folks on the platform, I came to the conclusion that unpacking all the internalized patriarchal, racist, ableist nonsense is part of the process. We expect a lot from people with marginalised identities, particularly on social media. We are expected to be the poster children for our communities, to be “woke” activists, to be patient with those who are willfully ignorant or actively harm us and to produce profundity with every post we make. Who has the energy for that?

Citations Khan D and Ansar Ahmed S (2016), The Immune System Is a Natural Target for Estrogen Action: Opposing Effects of Estrogen in Two Prototypical Autoimmune Diseases. Front. Immunol. 6:635. DOI: 10.3389/fimmu.2015.00635 *All stats in this paragraph are taken from the LUPUS UK Charity website: LUPUS UK. n.d. What Is Lupus? [online] Available at: <www.lupusuk.org.uk/what-is-lupus/ An American Werewolf In London. 1981. [film] Directed by J. Landis. Great Britain: Lycanthrope Films Limited.

After each transformation, the werewolf does whatever she wants. Usually that involves being majorly disruptive and then going home for some food and a long nap. Whenever my paws hurt or my teeth ache, I will rest and then I will rest some more. I will guard my self-care and luxuriate in the abject process of existence. It’s no pretty, sanitized, palatable purple butterfly, but I can think of worse ways to live.

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“DISABILITY REFERS TO THE OPEN MESH OF POSSIBILITIES, GAPS, OVERLAPS, DISSONANCES AND RESONANCES, LAPSES AND EXCESSES OF MEANING WHEN THE CONSTITUENT ELEMENTS OF BODILY, MENTAL, OR BEHAVIOURAL FUNCTIONING AREN’T MADE (OR CAN’T BE MADE) TO SIGNIFY MONOLITHICAL.” - Robert McRuer.

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HEART N SOUL AT THE HUB.

DOROTA CHAPKO & EVIE JEFFREYS. Heart n Soul at The Hub is a research project led by people with learning disabilities and autistic people. By bringing together people with and without learning disabilities who have different skills and experience, like research, art, design, technology and health, we are discovering new and exciting ways of working and doing research. We feel passionately about creating a positive change in our society for people with learning disabilities and autistic people. Our hope is that this research project will be a step towards understanding how this change can happen. As part of this project, a team of coresearchers with learning disabilities co-designed an accessible survey platform and created the first multimedia online survey to challenge and shift public understanding of learning disability. In the survey, intended to feel more like “having a conversation with the public”, the co-researchers ask questions in ways that are important to them and represent how they see themselves.

The role of the Arts in our project: 1. To feel safe and understood, to create caring and supportive environment for everybody. The task was to draw your hand and provide the names of people you can turn to when you need to talk to somebody. (Image 44) 2. To help us think what we want to achieve with this project. (Image 45) 3. To think of the audience for our survey – who do want to respond to our survey? Who constitutes the public? (Image 48) 4. To brainstorm who we are as co-researchers and how we want to be portrayed and understood by the public. (Image 46) 5. Drawings as the research output included in the survey to provide people with the visual descriptions of some questions and the context. (Image 47) 6. To remind us what we are here for – to make this world a better place for everybody! The aim of the survey is to “have a conversation with the public”, to receive questions to and from the public.

As part of this project, the co-researchers used the arts as a way to express their thoughts and feelings throughout the research process and as a creative way of coming up with the questions and illustrations for the survey. Explore Heart n Soul’s research surveys at heartnsouleye.com/asks DISABLED PEOPLE: THE VOICE OF MANY. // 149


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REFLECTION ON WORKING WITH SHADES OF NOIR.

FAVOUR JONATHAN, CENTRAL SAINT MARTINS, UK.

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Since I started working for Shades of Noir in October I have gained a lot more confidence within myself and my work, most importantly in reading and writing. I’m not perfect yet in my mind, I still have bumpy days where I eat my own confidence up but I’m happy with how far I’ve gotten. To be honest, I have always been terrified of writing and sharing, I’ve had this idea from a young age that no one cares about what I have to say or nothing I do is important. I embodied that mentality to the point that when I work or volunteer for anything I never thought my presence was important. When I land a big job I just think “ it’s by accident “ or when I got accepted into university, I thought “I’m filling up the space”. I am good with encouraging others because I would never want anyone to feel as lost as I did so speaking was my strongest point and making sure others were doing well. This was my main priority. My friends call me “ Aunty” or “ mummy” (Hentschel, n.d.) because of how nurturing I am to them and others. When I was asked to apply to join Shades previously I just hid away, I knew the people who worked for Shades and I was in awe of their work, the old and new teams. I saw how they enjoyed writing like my friend Charisse (Chikwiri, 2017) she loves writing just for fun and I didn’t because I believed I couldn’t. However, in October 2018 I joined the team but my thoughts were purely negative, I spent time beating myself up over it and I didn’t want to let anyone down… It will be awful. I’m just embarrassing myself. Why would anyone want to read this? They probably think I know what I’m doing but I really don’t, I’m just lost really. I’m basic. 154 // DISABLED PEOPLE: THE VOICE OF MANY.

Everyone will see how dumb I really am. They’re going to wonder why I have a brain of a 5 year old. My attention span is low, and god knows how long it takes me to write anything people will think is important. I’m dyslexic, easily distracted and my brain does a 360 before getting anywhere. Dyslexia with a history of self-doubt meant I had to learn that I am important no matter what anyone else had said to me in the past. Since I have been writing for Shades I’ve been doing alright and I’m really proud of myself for delivering written content weekly. I’ve learnt so much from this family and through this practice. I started working for Shades during the time my university course cohort were prepping for our dissertation draft, I stayed up in the library every day just writing what I felt and what drove my artwork in a way that it did, I wasn’t too sure about what I was doing but I knew strongly where my motivation was and why I worked the way I did. I handed in my draft without showing anyone or asking for help from the dyslexia support team at the university, I was too scared they would think my writing was trash and there was nothing good in what I have to say. When I got my feedback from my tutors, I was so confused as to why my work didn’t come back as being unsatisfactory? I felt like I was being lied too and in some ways I was upset that it wasn’t a bad grade as I had anticipated. I was told what I needed to do in order to make my final hand in a more ‘academic’ paper…. ‘’Academic’, this word ‘used’ to scare me. I had to power up and ask for support at the uni and with my family at Shades, if I was going to get the grade I wanted. It was a real battle.


The team had to show me that my writing was important and that many published people out there write just like I do and support me through losing fear as well as fighting with the negative thoughts inside my head connected with writing. My mind had been previously attuned to thinking I couldn’t and that I wasn’t enough. Throughout my journey, so far with Shades, I have learnt to prioritise myself, make sure I’m good before I start looking after the world, make sure I learn and don’t miss out because of fear. All this time I thought I had a writing mind of a child who hated anything ‘academic’, not knowing it was just fear and self-doubt noise inside my head stopping me from sharing my thoughts with THE WORLD and now having successfully completed my dissertation with a high grade. I am so proud of how far I have come.

Bibliography: Chikwiri, C. (2017). Shona, because of you I pronounce the O’s in onions and ovens. [online] Shadesofnoir.org.uk. Available at: shadesofnoir.org.uk/shonabecause-of-you-i-pronounce-the-os-in-onionsand-ovens/ [Accessed 19 Mar. 2019]. Hentschel, E. (n.d.). [ebook] Available at: boris.unibe.ch/41933/1/303-737-1PB.pdf [Accessed 19 Mar. 2019]. nhs.uk. (2018). Symptoms. [online] Available at: www.nhs.uk/conditions/dyslexia/ symptoms/ [Accessed 19 Mar. 2019].

I’ve learnt that I am important! I still get scared but I push myself because no one has scared me or told me I’m not good. The family at Shades has only pushed me further to be the best version of myself. I’ve learnt that it’s alright to have a different pace and be different in other ways too, we all have our own voices and I am good just as I am. I too am welcome at Shades of Noir I’ve learnt to stop hiding and start embracing and that I too, can shine brightly. It’s difficult but I have to continue to practice to build more confidence. This is a work in progress. We are all very different at Shades and that’s okay, in fact, that could be one of our collective strengths. I’m starting to realise that with all my quirks, I am enough! One day at a time and today is a good day. Thank you, Family.

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BRINGING DISABLED WOMEN TOGETHER. ELEANOR LISNEY FRSA AND RSA, UK.

Sisters of Frida is an experimental collective of disabled women. They want a new way of sharing experiences, mutual support and relationships with different networks. They are seeking to build a/ or different networks of disabled women. They would like a sisterhood, a circle of disabled women and allies to discuss, share our experiences and explore possibilities. So at this moment they remain strictly a female group - female includes anybody who self identify as female

We often get asked why we at the Sisters of Frida campaign for the rights of disabled women. Here are a few reasons why gathered through our research and covering the topics of employment and pay:

The mission of the Royal Society for the encouragement of Arts, Manufactures and Commerce (RSA) is to enrich society through ideas and action. We believe that all human beings have creative capacities that, when understood and supported, can be mobilised to deliver 21st-century enlightenment. Supported by our 29,000 Fellows, we share powerful ideas, carry out cutting-edge research and build networks and opportunities for people to collaborate, helping to create fulfilling lives and a flourishing society.

Despite qualifications, disabled women have lower participation rates in higherskilled jobs and work fewer hours than both non-disabled women and disabled men. 27% of disabled women are economically inactive compared with 16% of disabled men. Lone parenthood reduces female employment generally by 15%. However, disabled female lone parents are more than half as likely to work as non-disabled female lone parents.

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35% of disabled women (and 30% of disabled men) are paid below the National Living Wage in the UK. Disabled men face a pay gap of 11%, while disabled women face a gap twice as large at 22%.

At Sisters of Frida, our vision is to have a future in which disabled women are empowered, celebrated, informed, connected, valued, and at the centre of society. A 2016 Catalyst grant from the RSA helped support a series of workshops led by our organisation, which focused on neglected conversations about disabled women and sexuality. Our workshops enabled access to conversations by providing the necessary access as requested by the attendees. Along with these workshops, we have also used the opportunity to write a toolkit for making events accessible: www. sisofrida.org/sisters-of-fridas-accessibilityguide-to-meetings-and-events-a-toolkit/.


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Our conversations navigated a range of issues, from sex-positive self-image and consent to balancing dependence, independence, and interdependence. These topics are rarely discussed, even by disabled people’s organisations, and yet are so important if we want to build an inclusive society that embraces the experiences of disabled women. Women’s issues and bodies are on display and up for discussion, now more than ever, but disabled women’s bodies are often ignored and seldom mentioned in public conversation. This lack of visibility contributes to the outcomes outlined in the statistics above, and a lack of public data on disabled women and issues affecting us impedes

conversations about how to overcome these barriers. Disabled women are systematically marginalised and their voices not included. At Sisters of Frida, we aim to build up disabled women’s voices. We do that by being involved internationally, nationally, and locally. For example, we were at the European Parliament on domestic violence and disabled women. Lani Parker, a Sisters of Frida steering group member, identifies a distinct lack of spaces for disabled women ‘to come together as different disabled women’ sharing their rich and varied experiences, to challenge and support one another and to share learning. You can hear more from Lani in a short video clip on why we are working to create DISABLED PEOPLE: THE VOICE OF MANY. // 157


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more specialised disabled women’s spaces.I became a Fellow of the RSA in order to add my voice to the RSA’s platform and to engage in the many social and cultural activities that the RSA is involved with. At Sisters of Frida, we place significant emphasis on intersectionality – that our members’ varied identities comprising gender, disability, sexual orientation, age, and race mean that we belong to many communities and can share a great deal if society includes us. I look forward to continuing to work with the

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RSA and its Fellows in amplifying disabled women’s voices, and welcome contact from Fellows interested in the ongoing important work of the Sisters of Frida. Citation: Lisney, E. (2018). Sisters of Frida: bringing disabled women together - RSA. [online] Thersa.org. Available at: www.thersa. org/discover/publications-and-articles/rsablogs/2018/01/sisters-of-frida-bringing-disabledwomen-together [Accessed 23 Aug. 2019].


AUNT VI, #QUEENSUGAR, BLACK WOMEN & OUR DISABLED BODIES.

VILISSA THOMPSON, UNIVERSITY OF SOUTH CAROLINA, US.

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Vilissa Thompson is a macro-minded Licensed Master Social Worker (LMSW) from Winnsboro, SC. Vilissa is the Founder & CEO of Ramp Your Voice!, an organization focused on promoting selfadvocacy and strengthening empowerment among people with disabilities.

Being a Disability Rights Consultant, Writer, & Advocate affords Vilissa the opportunity to become a prominent leader and expert in addressing and educating the public and political figures about the plight of people with disabilities, especially women of colour with disabilities. DISABLED PEOPLE: THE VOICE OF MANY. // 159


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Being a disabled woman of colour herself, sharing her life experiences, and tales from the women she has encountered during her advocacy work has empowered her immensely because it validated the struggles and successes she endured in her young life. Vilissa created the #DisabilityTooWhite viral hashtag that addressed the lack of diversity within the disability community and how a lack of representation impacts disabled people of colour and their ability to feel fully included and accepted within the community. She also established the Black Disabled Woman Syllabus, a resource that has garnered much attention and praise from those within academia and the disabled community for its focus on the experiences of a very underrepresented group. Vilissa can be found on Twitter at @VilissaThompson, @RampYourVoice, and @WheelDealPod. 160 // DISABLED PEOPLE: THE VOICE OF MANY.

Why We’re Still Whole: If you haven’t watched the show “Queen Sugar,” I don’t know what you’re doing with your life. The new season premiered on OWN last week, and the series is spearheaded by the talented Ava DuVernay. In this season, one of the beloved characters, Aunt Vi, has an illness that is a part of her character story. It was brought to my attention that some people are having difficulty in watching Aunt Vi live her truth with illness, and Ava gave the incredible response to that in her tweet. I decided to tweet about the reactions to seeing disability/illness depicted on the small screen because this aligns with my desire to discuss the experiences of Black women with disabilities/illnesses for my Patreon (which will debut on July 19th, in commemoration of the 5th anniversary of Ramp Your Voice!). Below are the thoughts I had on the matter, which touched on the problematic nature of refusing to see someone as a


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whole with a disability/illness and how that projection impacts the way Black women and femmes especially view their bodies and attain acceptance. Tweet as follows: Thank you @Ava, for stating what we all know – that Aunt Vi is WHOLE with her physical illness. #AuntViIsWhole #QueenSugar.

in a person’s humanness that is unsightly or to the extreme sense, is a marker of shame. Disability/illness is neither – it is simply a part of the human experience. Disability is the ONLY marginalized identity that someone can become a member of at any given point in their lifespan. The “shame” or “fear” of becoming disabled is disturbing, particularly when “wholeness” or “value” is attached to how we deem someone who is or becomes disabled.

I want to dive into why thinking that Why are we so uncomfortable with sickness/disability tarnishes a person’s seeing disability/illness, especially “wholeness” and the implications of such ways in the Black community? of thinking on Black women’s/femmes bodies. First off, I, & so many others, have discussed Well, it’s due to many factors: the problematic opinions of those in the How disabled enslaved bodies and lives Black community surrounding disability, were discarded & abused by slave owners. sickness, & wholeness (as it relates to How religious teachings and practices religiosity & and collective group think). discuss and degrade disability – the Aunt Vi’s value or life isn’t any less devalued “placing hands on people” or “praying because she has an illness. This way of hard enough” to be healed/cured thinking is stating that disability is a flaw mentality (that never works – shocker!). DISABLED PEOPLE: THE VOICE OF MANY. // 161


How we have stigmatized disability/illness in our community by downplaying the impact it has on those we love & not wanting to watch or see them “suffer.” That avoidance is selfishness – it is about OUR uncomfortable nature; and we, intentionally or not, project that to our loved ones about their bodies and disabilities. Yes, Aunt Vi is my fave QS character, but I also want to see her journey with an illness to be flushed out and done correctly. Why? BECAUSE BLACK WOMEN/ FEMMES HAVE DISABILITIES AND ILLNESSES! One thing I noticed is that we do not give BW/femmes space to openly discuss or accept their disabled bodies, regardless of if their disabilities are visible or invisible (nonapparent). I see BW/femmes whom I’m friends with on here talk about their disabilities/ illnesses openly and DO NOT identify as or realize that they are disabled and/or spoonies. So, for me, as someone who is always looking at gaps due to my social worker & disabled woman lens, I plan to change that by developing a series on my Patreon that’ll dive into this very thing. Black women/ femmes, esp., need to be given the space to share their stories AND know from those they love that their disabilities/illnesses are NOT imperfections; it’s a part of who they are, just like their 4C hair or shapely hips.

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If we constantly state to “love Black women/ femmes,” then that needs to include when they are disabled as well. We can’t wish for their disabilities to be “reversed” because it’ll make US, not THEM, feel better. I know Aunt Vi is a fictional character, but art imitates life – there are BW/femmes out here who are being told by their families that their “broken” bodies are “too much” to deal with or hear about. This creates and breeds silence, loneliness, and isolation – all of the things that can be more detrimental than the actual disabilities/ illnesses themselves. If you don’t think so… you haven’t read compelling pieces by Black disabled women/femmes on the matter. Aunt Vi, AND all of us, deserve better. We deserve candid conversations about disability/illness – not just merely whisper about it, hoping to not disturb or cause frustration to other people who don’t want to see us in our entirety. Bibliography Thompson, V. (2018). Aunt Vi, #QueenSugar, Black Women, & Our Disabled Bodies: Why We’re Still Whole - Ramp Your Voice!. [online] Ramp Your Voice!. Available at: rampyourvoice.com/2018/06/07/aunt-viqueensugar-black-women-disabled-bodiesstill-whole/ [Accessed 23 Aug. 2019].


CONSIDER THE GENDER SPECTRUM.

KAY ULANDAY BARRETT, DEPAUL UNIVERSITY, US.

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Kay Ulanday Barrett is a published poet, performer, educator, food blogger, cultural worker, and transgender, gender non-conforming, and disability advocate based in New York and New Jersey. Barrettâ&#x20AC;&#x2122;s writing and performance centres on the experience of queer, transgender, people of colour, mixed race people, Asian, and Filipino community. The focus of their artistic work navigates multiple systems of oppression in the context of the U.S. Dedicated to community-driven cultural and movement building work, they have served on committees, led

workshops, and featured with many organisations dedicated to the selfdetermination of Transgender, People of Color, and Queer People of Color. Barrett has been an educator teaching poetry, spoken word, theatre, slam poetry, and cultural work at various high schools and organisations nationwide. Their latest endeavours include workshops that centres experiences of intersectionality, social justice, disability and chronic illness, and martial arts. Universities and organisations alike seek their work to address issues of marginalised identities and cultural work as movement building strategy. DISABLED PEOPLE: THE VOICE OF MANY. // 163


consider the gender spectrum “I know what it is to be broken and be bold Tell you that my silver is gold” - Moses Sumney when all your skin / reads trespass / reads not worth a piss / literally / reads not even worth excrement / reads good enough to not be dead / maybe if she sleeps with me / i am trained to think / pity once / a man spat in my face / kicked / my cane / touched his dick like a small itch / i erased into words like / dyke she-man die die / you’re never going to be / real / he says i cannot tell you what that does / to a person / how dreams sew shut / this exchange is dizzy surgeon on wound / life is abscess and you are / stitches that just stay / unhealed / in the right light as i was saying / another dude pushed me / stalked me for blocks until i turned the corner / and faked a call on my / cell phone that guy said / you don’t have any friends / and he wasn’t wrong exactly i am not a real man / this doesn’t happen to / everybody right to be real / doesn’t mean a war to meet someone’s / parents or to wear a shirt at the mall / because what is your love / but shame / worthy

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this world / makes me feel that way / no matter the / constellation of well intentioned quotes / or rainbow like buttons / no words can be barrier / for night terrors so i make / like a flicker / smile at parties / which is a lie really for wanting / to be here / which is the scapegoat / of something larger / says my therapist / and he quotes me throwing fire / back to my heart / when all I want is to be melted / not almost ashes / another dark poem / says another editor / and i think this is nothing / i have a therapist at least / picture an alley / where your legs are tangled to / dumpster groans / and if actually reported on the news / they jam you between a funny bird story / and a partly sunny forecast / and for fifteen seconds the anchor / doesn’t blink and bet you / they get that your name wrong / again / hash tag here.


“CONSIDER THE GENDER SPECTRUM “I KNOW WHAT IT IS TO BE BROKEN AND BE BOLD TELL YOU THAT MY SILVER IS GOLD” - Moses Sumney.

DISABLED PEOPLE: THE VOICE OF MANY. // 165


Helpful Resources • Shades of Noir - Mental Health & Creative Healing - issuu.com/shadesofnoir • Centrepieces Mental Health Arts Charity - centrepieces.org • Black and Asian Therapists Network - baatn.org.uk I studied art and design at London Guildhall • Our Naked Truths (Life Art Therapy Sessions) - @ournakedtruths University (Sir John Cass School of Art) and it has always been my goal and my passion to share my art with the world. My work is inspired by many things; ancestry, emotions, mental health, selfacceptance and healing. I love to create artwork that speaks to people on a personal level - each piece has its own journey and story. I believe that every piece I create will resonate with someone, somewhere. I am a mixed media artist and sculptor from Reading, Berkshire and the founder of Black British Visual Artists. I worked as a bespoke textile & interior designer for 12 years before deciding to leave the corporate design world to return to my first love - art.

I am a strong advocate of art as a form of creative therapy and I strongly believe that engaging in art - whether in a creative capacity or a voyeuristic role - has a beneficial effect on our mental health and personal wellbeing.

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BROWN GIRL NOT IN THE RING. JHINUK SARKAR, CENTRAL SAINT MARTINS, UK.

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Jhinuk Sarkar is an Illustrator, Head of Community & Accessibility at Turf Projects and currently an Associate Lecturer at UAL and Lecturer of MA Illustration at another Higher Education Institution.

The opportunity that Shades of Noir gave me through the Teaching Within program was not one that I thought was ever open to me: To recognise my own area of expertise. To find value in my own education experiences.

Jhinuk continues to make connections between her Illustration practice, whilst striving to provide inclusivity and sensory experiences in the Arts.

I didnâ&#x20AC;&#x2122;t know that any person would be interested, would appreciate my work, or find reference in it, let alone other students finding value in it for the sake of direction in their work.

She continues her work in these areas through research, practice and teaching.

Teaching Within gave me space to reflect on a few important points in my arts education and subsequent practice as an Illustrator and Disability access consultant: DISABLED PEOPLE: THE VOICE OF MANY. // 167


“THE SINGLE STORY CREATES STEREOTYPES, AND THE PROBLEM WITH STEREOTYPES IS NOT THAT THEY ARE UNTRUE, BUT THAT THEY ARE INCOMPLETE. THEY MAKE ONE STORY BECOME THE ONLY STORY.” - Chimamanda Ngozi Adichie.

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My voice as a postgraduate student interrogating my ‘Mother Tongue’ was not nurtured. I had no confidence to explore identity in my illustration work. People around me in ‘authority’ as teachers did not adopt any kind of transformational education principles that I can recall. The power seemed to lie within a definitive single story. “The single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.” Chimamanda Ngozi Adichie My experience as a new graduate with a Masters left me with uncertainty, at a time I now realise I should have been ready to thrive. At least I kept on creating work. I know other friends and peers gave up at this point. Whilst I carried on creating, themes in my work exploring identity kept returning. Even amongst commissions and work in arts organisations outside of my illustration practice. It was only during my PG Cert education where I found a community of peers that I really thought: This means something. Other people feel like this too. I finally began to note my skills, their value and some that lay within my identity. “The only solutions that are ever worth anything are the solutions that people find themselves.” Satyajit Ray Themes of belonging and identity will always be there in my work, ideas, illustration practice. Whether they are subconscious or conscious, it’s part of me.

Teaching Within gave me the nurturing I needed the first time round as a student. But this time, the nurturing has offered me confidence to challenge myself and others in my practice as an Illustrator and Educator.I also found out something new about myself as a student and the way that I learn. I was diagnosed with Dyslexia and it all made sense. It rationalised my struggles, the efforts I went to when it seemed seamlessly easy for my peers, the taboo of owning my specific learning difficulty and telling my family (the ‘dis’ in disability is bold and maybe considered a deficit in my Indian culture). I initially held great frustration about not knowing throughout most of my education. But now I can own how I learn and understand this more deeply. It’s given me a new confidence I didn’t know possible. If it wasn’t for this space to be on the PG Cert, particularly the inclusive teaching and learning unit I would not have discovered this part of me existed. I still don’t feel like I’m ‘in the ring’ but I’ve realised that doesn’t make me feel left out, it makes me feel like an individual. This confidence has allowed me to find value in my work, for myself and for students I aim to educate and learn from, because education doesn’t travel in one direction. “Everything comes to us that belongs to us if we create the capacity to receive it… Reach high, for stars lie hidden in you. Dream deep, for every dream precedes the goal.” Rabindranath Tagore.

DISABLED PEOPLE: THE VOICE OF MANY. // 169


A FEW WORDS FROM CHINA MILLS. When asked about my job, I usually say something about researching global mental health. If I’m talking to psychiatrists and psychologists their response is often to tell me something that ends with ‘but you know what it is like to treat people with schizophrenia’. And I think, and sometimes say, ‘no, I don’t.’ Instead, I know what it is like to live with and love people who have schizophrenia diagnoses – because that’s my grandma, and my uncle and my friends. When I was a kid, my grandma, who wore blouses with gold buttons, clip-on earrings, and who had a special voice for the phone, one day told us that the next-door neighbours were inserting recording devices that read our minds through the wall. I curled up behind the big box where the Christmas decorations were kept, listening to my Grandma cry with the fear of being called ‘mad’, because that meant being carried away to the asylum in a van by men in white coats. She was wrong. They didn’t carry her away – we took her in the car. She was diagnosed with Schizophrenia. Psychiatrisation is etched into my and your life in ways that are felt differently at different moments. A ‘family history of schizophrenia’ is written into the maternity notes of the baby I am carrying. The unborn are already marked. This publication made me think a lot about Audre Lorde – about there being 170 // DISABLED PEOPLE: THE VOICE OF MANY.

no such thing as a single-issue struggle because we don’t live single-issue lives. It made me think about the threading together of multiple forms of oppression with kinds of distress that often come to be spoken about as mental health issues. In 2018, I went to a super shiny Ministerial summit on global mental health, where Conservative Members of Parliament positioned the UK as a global leader in mental health. The event was held in County Hall - just over the river from Westminster, where governmental decisions to cut welfare, and sanction already impoverished disabled welfare claimants has so detrimentally impacted people’s mental health and led to multiple instances of suicide. As Eleanor Lisney and Sisters of Frieda similarly point out, in 2016, the UN found that the Government’s austerity policies had enacted ‘grave’ and ‘systematic violations of the rights of persons with disabilities’. The Summit didn’t go without critique, with both the National Survivor and User Network (NSUN) and Shaping our Lives producing open letters with multiple signatories raising a multitude of concerns about the Summit; from lack of involvement of people with lived experiences in its organisation, to the problematic exporting of institutionally racist and medicalised models of mental health care worldwide. I have spent many years being friends with, and working alongside, people who identify as service users - as people with lived experience of distress, as psychiatric survivors, as people with psychosocial disabilities, and as ‘Mad’ folk. These are not different ways of saying the same thing – they signify sometimes very different identities and perspectives rooted in


very different experiences of distress, mental health and contact (or not) with services and professionals. For many, over-medicalisation is a concern – easy access to diagnosis and drugs as first-line treatments. Yet diagnoses do not always mean access to other forms of support – austerity driven cuts in the UK have meant many folks experiencing crisis are turned away. Diagnoses can also be used against people to deny their reasoning and competency. Yet at the same time, the distress and pain of some folks, especially people of colour and even more specifically women of colour, is often not listened to or taken seriously. For others, especially black men in the UK, their distress is often responded to at the hard end of services – compulsory detention under the Mental Health Act (1983); forced medication; incarceration; and referral through the criminal justice system. Medicalisation, then, looks very different for different groups. Sanism is a ‘system of discrimination and oppression’ that marginalises ‘mad’ ways of knowing and underpins epistemic injustice in the devaluation of some people’s stories and experiences (Leblanc and Kinsella, 2016, p. 61) The Mad People of Colour Manifesto by Rachel Gorman, Annu Saini, Louise Tam, Onyinyechukwu Udegbe & Onar Usar was written by a self-identified ‘group of queer, mad people of color’ whose experiences as ‘survivors, patients, ex-patients, or inmates’ are diverse, yet cannot be separated from wider experiences of racialisation, madness, and other oppressions. The Mad People of Colour Manifesto articulates the difficult truth that sanism isn’t something that only happens to white folks, and that the ‘racism, sexism and oppression circulating in the system are also circulating in the mad movement’. I have attended many events and exhibitions where white histories of mental health user, survivor and ‘Mad’ activism are documented without once mentioning the word ‘white’ , and often completing overlooking or erasing the multiple her-stories of activism and knowledge production of Mad people of colour. Survivor

researchers, Crepaz-Keay and Kalathil (2013), illustrate that much can be learned from projects that centre experiences of distressed and/or mad identified people of colour. Yet often stories of distress and madness are commodified and sold by big mental health charities as recovery narratives to be consumed at a distance – the distance of looking back retrospectively from a place where things are supposedly ‘better’ (Costa et al. 2012). Many of the stories told in this publication show the threading together of the personal with the political - how stories create connections between our experiences of the world and the multiple injustices people experience. These stories speak of pain, yes, but also, as discussed by Eleanor Lisney and Sisters of Frieda, of the systematic marginalisation of disabled women; how black and brown women’s pain is ‘underestimated and undertreated’, and how academia and the arts bruise and inflict pain – how, for many disabled folks, they constitute ‘contact sports’, as Serena Katt says in their piece on the work of Khairani Barokka. Vilissa Thompson, also in this volume, speaks too of the systematic devaluation of those deemed ‘unproductive’ (where productivity means certain kinds of paid work only) and therefore ‘ill’. Yet currently health is defined through productivity; many disabled folks are found ‘fit to work’; universities can deem certain students ‘unfit to study’ (requiring mandatory leave); and often our recovery is defined through and measured by work. We shouldn’t forget here that most distress and impairment around the world is socially produced - the product of structures – and that the historical and contemporary production of debility and of disabling conditions (of hostile environments) is often highly profitable. The Work Capability Assessments carried out on disabled folks in the UK are contracted out privately, as are the running of Immigration Removal Centres. Huge biotech companies, such as Syngenta, whose aggressive agribusiness models and seed-patenting practices have DISABLED PEOPLE: THE VOICE OF MANY. // 171


“THE ACCOUNTS, EXPERIENCES, IMAGERY, KEY WORDS, GUIDING QUESTIONS OF THIS PUBLICATION PROVIDE A JUMPING OFF POINT, A SPACE FOR US TO THINK WITH AUDRE LORDE – WITH WHOM I BEGAN – TO CREATE NEW PATTERNS FOR RELATING ACROSS DIFFERENCE.” - China Mills.

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impoverished and immiserated hundreds of thousands of farmers in South Asia – leading many to suicide - are the same companies that sponsor the World Health Organization’s World Suicide Prevention efforts. The accounts, experiences, imagery, key words, guiding questions of this publication, thus provide a jumping off point, a space for us to think with Audre Lorde – with whom I began – to create new patterns for relating across difference. References: www.disabilityrightsuk.org/news/2017/august/ human-catastrophe-%E2%80%93-new-uncondemnation-uk-human-rights-record www.nsun.org.uk/news/global-ministerial-mentalhealth-summit-open-letter; https://www.nsun.org. uk/Handlers/Download.ashx?IDMF=3103fcfddee4-4aed-a44e-0157f8236362 Leblanc, S. and Kinsella, E. (2016). Toward epistemic justice: A critically reflexive examination of ‘sanism’ and implications for knowledge generation. Studies in Social Justice, 10(1): 59–78. Mad people of colour manifesto asylummagazine.org/2013/12/mad-people-ofcolor-a-manifesto-by-rachel-gorman-annu-sainilouise-tam-onyinyechukwu-udegbe-onar-usar/ Costa, L., Voronka, J., Landry, D., Reid, J., McFarlane, B., Reville, D., and Church, K. (2012). Recovering our Stories: A Small Act of Resistance. Studies in Social Justice, 6(1): 85-101. Crepaz-Keay, D., & Kalathil, J. (2013). Power, Knowledge and Personal Narratives. In K. W. Fulford, M. Davies, R. Gipps, G. Graham, J. Sadler, G. Stanghellini & T. Thornton (Eds.), The Oxford Handbook of Philosophy and Psychiatry. Oxford: Oxford University Press.

DISABLED PEOPLE: THE VOICE OF MANY. // 173


Back of someones head. They are facing a crowd, with a laptop

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on the side

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AN INQUIRY INTO DISABILITY + INTERSECTIONAL IDENTITIES. REBEKAH UBUNTU, UAL, UK.

Rebekah Ubuntu is a multidisciplinary sound artist and university lecturer. Their practice explores speculative fiction through electronic music, sound art, voice, performance, installation, text, songwriting and the moving image.

A speculative conversation unfolds between two of my selves: Me One and Me Too.

Most recently, Tate Modern commissioned Rebekah to create ‘Despair, Hope and Healing’, an audiovisual performance exploring climate justice in response to the Olafur Eliasson exhibit. In tandem with this performance, Tate Modern’s Uniqlo Lates invited them to discuss the influence of Afrofuturism in their work.

The two engage in an autoethnographic dialogue modelled after bell hook’s selfinterview in Chapter 4 of her renowned book ‘Teaching to Transgress’ (1994).

Rebekah’s work has featured at BBC Radio 1, Tate Modern, Tate Britain, Wellcome Collection, Barbican Centre, The Foundation for Art and Creative Technology, New Art Exchange, Copeland Gallery, London’s Serpentine Galleries and European arts institutions. Find out more about Rebekah here: rebekahubuntu.com

Me One is my cyborg persona. Me Too is my persona of lived experience.

Me One: Hi Me Too. Lovely to be here with you in our cosy cocoon. I want the people reading this to know about you as an artist. Can you describe your current creative practice? Me Too: Thanks Me One! Our cocoon is literally my favourite place and there’s no one I’d rather be here with than you! My lived experience is the compass and anchor for my work which spans sound art, sound design, music composition, installation, performance, costume, text and video. I have just completed an Afrofuturist EP exploring an ever-present paradox in my life: belonging and unbelonging. For me, the latter has been most prevalent. I am seeking to counter a lifetime’s unbelonging by creating worlds where I do belong. I have been fortunate to share the burgeoning fruits of this project with commissions from the Barbican Centre, the Wellcome Collection and Nottingham’s New Art Exchange.

DISABLED PEOPLE: THE VOICE OF MANY. // 175


Me One: To segue into our conversation, I want to start by congratulating you on therapy. I know it’s been a journey! Can you tell me a bit about it? Me Too: Thank you! Yes, it has! I have been in trauma-based therapy for two-years and have undergone more transformations during this time than any prior period in my life. Trauma and abuse are known to dissociate and fragment a person’s psyche. Much of my trauma is a consequence of the eighteen years I spent in foster care. Prior to therapy, I couldn’t articulate the nuances of my lived experience but two-years in, I am developing tools, language and courage to confront and express the shame and stigma associated with my disabilities and upbringing. Me One: You’ve mentioned shame and stigma. How do you cope with it in your day to day? Me Too: I have learned that disclosing my disabilities and upbringing, especially Autism and my experiences of foster care, provokes discomfort in others. I have learned that it is better to mask my background and how my disabilities want to express themselves (social conformity), than risk being targeted, bullied or socially shunned. I prioritise social safety despite the ramifications to my wellbeing – chronic pain, exhaustion and poor emotional health. It doesn’t seem like a fair trade-off but when you’ve been repeatedly hurt like I have, making sacrifices to stay safe feels very necessary. Stigma is real and brutal. Me One: Can you describe some of the nuances in your identity and upbringing in relation to disability?

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Me Too: Sure, well, none of my experiences as a disabled person can be divorced from intersectional identity politics. I am Black, I am read as a woman, I am non-binary and gender non-conforming, I am queer, I am from an underclass and working-class background, I am a survivor of abuse and a survivor of the UK’s fostering system, I was a young carer to a single parent and I am an orphan. To say I am disabled and not much else doesn’t make sense. How can it make sense to anyone? There is no on/off switch for my disabilities or my coexisting identities. I am all of the above (and more) all of the time. There is very poor research in the area of fostered children, less still for those who are disabled, Black, read as female and from low economic backgrounds. I was fostered and went to school in one of the poorest boroughs in London. My foster carers’ internalised stigma associated with chronic health conditions, learning differences and mental health issues meant I was punished for the way my disabilities presented. The stress of this on my body and psyche led to repeat hospitalisations, yet I remained undiagnosed until I left the fostering system and was able to take independent charge of my health. In primary school, I was labelled a ‘problem child’ and an ‘attention seeker’, due to behavioural issues associated with (undiagnosed) anxiety, acute traumatic stress, ADHD, Autism and dyslexia. My school provided disability screening and support to my white middle-class peers but made no provision for me. The intersection of my race, class, gender and fostered status took priority. In secondary school and college, the difficulties I presented continued to be seen as a consequence of being fostered, which again took priority over investigating my disabilities. It is well documented that those read as girls are systematically undiagnosed compared to their male counterparts, especially regarding learning disabilities such as ADHD and Autism. Only in


recent years has there been an effort to address gender disparities in diagnosing and treating Autism and ADHD. Me One: Who supports you in your daily life? Me Too: My partner and my therapist. Me One: What are your coping strategies in social situations? Me Too: I never leave the house without earplugs and headphones to manage sensory overwhelm. Once out the door, I listen to Janelle Monae’s ‘Django Jane’ on repeat, which I have done since she released her ‘Dirty Computer’ album a year ago – the song calms me and makes me feel brave as I walk down a bustling street or enter a noisy tube station. I ensure I prepare a creative task for myself which I can complete on my phone during a commute to avoid eye contact. If I am drained/anxious I use mindfulness apps to listen to rainforest soundscapes or guided meditations. I try not to travel during rush hours. When I leave the house, I assume the persona of a middleclass non-disabled person. Performing a lie is often the most viable strategy to avoid judgement and social exclusion, especially in hostile environments. I acknowledge my passing privilege in this respect and that I am afforded safety because I pass.

Me Too: The notion of ‘coming out’ is problematic because there’s no guarantee of safety or care once you do. Many of the queens on Drag Race face death threats with no contractual or legal obligation from the show’s producers or any part of the Drag Race institution to protect them. ‘Coming out’ is a luxury dependent on ability, race, class, gender, sexuality, familial, economic and geographic privilege. This is the paradox of invisibility and hypervisibility inherent in intersectional oppression – if you ‘come out’ you risk harm to your safety and your health. If you don’t ‘come out’ you are labelled regressive. My survival as an intersectional person (disabled, Black, queer, transfeminist, working class, etc) depends on having access to my safe and cosy closet – aka my cocoon. I won’t be giving up my cocoon anytime soon nor should I be expected to. Find Rebekah online: @rebekahubuntu

Me One: There’s a lot of public discourse about ‘coming out’ and ‘owning’ your identity. Ru Paul’s Drag Race is a current popular culture example of this. The reality TV series sometimes features disabled contestants as well as those identifying as trans and those living with or affected by HIV/AIDS. An implicit expectation in the show is that contestants bare all or risk elimination. How do you feel about this?

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FIBRES.

KANA HIGASHINO, CENTRAL SAINT MARTINS, UK.

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MY DISORDER. BOOK GEEK, SHE/HER, UK.

Book Geek is a black female who lives in London and is currently 13 year of age. She is an avid reader of all types of books, articles and fanfiction. She is a freelance contributor to Shades of Noir during periods when secondary school work has subsided. Shades of Noir continues to support the dissemination of Book Geek works through our mediums with the agreement of her parent(s).

My disorder Makes me wander the boarder Between being alive and living It’s like part of me is missing Keeps me captive in my own mind My normal life left behind Confined by imagery walls Making me feel small I want to break free But my disorder doesn’t agree I know I need help So, I tried to yelp Someone please acknowledge me So, I can be who I want to be I’m nearing the end of my journey But firstly... Let me say Thanks to those who were there when I was led astray You were there When my disorder got too hard to bare You gave me acceptance When all I thought, I was being is a hindrance As I leave this existence I’m happy I have a clear conscience... By Book_Geek - Poetry inspired by the many teen fiction books on trauma and mental health sufferers

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“I WANT TO BREAK FREE BUT MY DISORDER DOESN’T AGREE I KNOW I NEED HELP SO, I TRIED TO YELP SOMEONE PLEASE ACKNOWLEDGE ME SO, I CAN BE WHO I WANT TO BE I’M NEARING THE END OF MY JOURNEY BUT FIRSTLY...” - Book Geek.

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IN CONVERSATION WITH KALIA DOUGLAS-MICALLEF.

SHADES OF NOIR, UK.

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Kalia Douglas-Micallef is the founder of Anti-Ableism. Anti-Ableism strives to promote an anti-ableist narrative and create systemic education reform for children and students with disabilities. She is passionate about disability rights - with a profound lack of accountability when it comes to disability rights and justice she think itâ&#x20AC;&#x2122;s important to foster an inclusive and accessible environment for everyone to thrive and acquire knowledge together. Kalia loves meeting new people and connecting, heavy content/material films and documentaries, educational 182 // DISABLED PEOPLE: THE VOICE OF MANY.

videos such as tutorials and workshops, writing, drinking coffee and tea, exercising, reading, researching and staying curious. Shades of Noir sat down with Kalia Douglas-Micallef, founder of AntiAbleism, to discuss her mission to spread awareness about ableism and audism documenting the lived realities of folks with disabilities, as a means to promote an anti-ableist narrative and create systemic education reform for children and students with disabilities. We would like to thank Kalia for taking the time to speak with us.


Can you please give a brief overview of your role (positioning) and motivations? Absolutely.My name is Kalia-Douglas Micallef, I am 23 years old, and in 2017, I founded the Anti-Ableism movement which strives to build and spread awareness about ableism. In the future with more acquired skills and completed projects, I hope to expand the movement. One of my top goals is to work primarily in the education system. I’m currently in school studying Interaction Design so I want to be able to implement those skills within workshops that I would like to present to school boards across the nation on how to make their curriculum more accessible and accommodating of students with disabilities, with or without an individual education plan as not every student has access to an education plan. An education plan can only be acquired through a learning assessment, which is often not provided by school boards across the globe, nor are the expenses covered. Many disabled and otherwise marginalized students are put in classes that hinder their academic learning due to prejudiced and pre-conceived notions about the individual and their family regardless if a learning assessment has been formulated. I want to focus on eliminating streaming that often targets disabled and students who belong to marginalized communities. How I plan to achieve this is by conducting research and accumulating data on the disparities that exist within the public education system. The skills acquired from interaction design will help me convey my message and data findings using various mediums and formats. I am interested in designing accessible products (whether electronic or physical) from a multi-sensory design standpoint wherein the information provided can easily reach the masses and all demographics, but I want to present these possible solutions to school boards on the basis of equity and

how ultimately following legal procedures regarding anti-discrimination policies within design and structure that exceeds the classroom as I am also referring to the outer design and infrastructure of the institution itself. All of these investments that so many companies and institutions deem unworthy will actually increase profits and capital gain. To me, it’s all about the presentation, and there’s a dire need for institutions in particular to come to terms with the fact that abiding by accessibility laws and including accessibility in your budget will inevitably allow your product to grow tenfold in the year of 2020 and beyond. Can you speak a bit more for our audience about what is meant by [Anti]-Ableism? Absolutely. So, to me, ableism is specific discrimination against disabled people. Growing up I never had a specific term for the discrimination that I faced and so when I learned what it was I thought ‘This is it. This is what it is’. Ever since learning about the term and my personal relationship with it, I really wanted to spread more awareness about it as to educate others as well as myself regarding my journey inward. As frustrating and saddening that it was to continue to learn about the ways in which myself and my community are oppressed on a global scale, it simultaneously lit a fire in my belly that has yet to be put out. It continues to make me feel empowered and the work to be done is endless, and I don’t say that from a tedious point of view, I mean it in the sense that the opportunities for creation and change are limitless and it’s such an exciting community to be involved in and work alongside diverse disabled people. When I learned specifically about systemic ableism that occurs within employment and education, I was just very passionate about doing what I could to spread the message and make it well known. So I then created my first educational video where I interviewed DISABLED PEOPLE: THE VOICE OF MANY. // 183


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some of my friends from college and asked them to define the term ableism and to share their experience of ableism in school, whether because of a lack of accommodation from teachers and in classes or the actual physical structure of building architecture. You just discussed it previously, but what were your overriding motivations in focusing on education, and do you think it could be situated anywhere else? I would like to speak to multiple school boards across Ontario because that’s where I currently reside and where most of my discriminative experiences stem from. To start my foundation here I think would be so impactful for me not just on a systemic level, but a personal level as well. I feel ready to heal my inner child in that sense. Of course ideally I would like to extend it worldwide. That would be amazing. But right now I want to start off with the Toronto district school board because that’s my hometown and I feel ready to present what I have to offer, and with a vengeance! Amazing. And what other activities have you been doing in your hometown? Can you tell me about how the community and if there are people who are helping you in your activism? For Anti-Ableism it is just me as I’m a sole proprietor in this business that has yet to be developed in the ways I envision. I’m not really looking to expand it right now in that sense, I just want to focus on my education first and foremost and to do my own little creative projects on the side. It’s really fun for me and I see it as such a positive outlet that I’m fine with taking the time to build this platform into what I believe it can be, but I want to have to something to show for it. Whatever comes my way, I’m more often than not willing to accept, but also I value assuredness and ensuring that what I’m doing with Anti Ableism always includes an element of passion.

I am actually looking to create an animated TV series, just as a little teaser to go along with a children’s book series I’d like to expand on. So that’s really exciting because I really care about educating the kids and also that they have a solid representation and to be able to see themselves on television. I rarely, if ever saw proper representation of myself on TV growing up. I was incredibly obsessed with television, and I never encounter a young Black girl with hearing aids. If I had been subjected to that, I think I would’ve spent a lot less time idolizing non Black and specifically white female stars as to imagine morphing into them because my own existence seemed synthetic. There’s a differene between having Black dolls, dolls of colour and disabled dolls, and actually seeing that representation on television and having it be grounded in reality. Dolls aren’t real. And especially for Black girls and women growing up, the way non Black people and particularly white people view us as sub human and think our hair is some majestic creature to be touched, all of these micro-aggressions really impact you whether you’re aware of it or not. And so to have that proper representation in the media wherein Black disabled people are the star of the show, but it has nothing to do with their disability is even better, and we’re all still waiting for that in depth, real life, brilliant scriptwriting to be accepted by major TV networks. There has been progress, but there needs to be more, and to try and contribute to that would be ideal. And I want to get to the place wherein it’s not just an ideal concept. It’s a real concept. I feel that there is a very white narrative in terms of disability politics as I wanted to get your opinions around that; Around the different kind of intersection that happens if you’re a person of colour, let’s say, and then you have a disability. Yeah. I think it’s really important specifically for Black people’s experiences to be centered within the conversation of Black History DISABLED PEOPLE: THE VOICE OF MANY. // 185


Month and speaking about all the ways in which we are oppressed. Black disabled people are fought and murdered by the police at higher rates than non disabled Black people. Black disabled people have been constantly erased from history, and so that’s why I think it’s essential for Black disabled people to be centered in these conversations so we can honour our Black disabled ancestors who paved the way. Black disabled people exist and it’s time to start putting it to the forefront as no one is untouched from disability. I struggled a long time with the idea of Black disabled pride because being Black in itself is already a minority, and so it’s almost natural to want to dissociate from the reality of being doubly oppressed. All the more so I think it’s important to include prominent Black disabled figures specifically during Black History Month as to rid that erasure and let more pride come to the surface. I am really proud to identify as Black and deaf/ disabled. I am so proud of my identity because I am layered, complex, brilliant, I have so much lived experience to bring to the table and so much wisdom and knowledge to execute to others. And even with this heightened self-esteem, I still have my moments, but it gets easier as you grow more comfortable in your skin. I look back at my childhood and I had really big colourful earmoulds, and I feel tremendous pride and love to know that I proudly wore them. Being able to look back at that innocent confidence, even with what I know now to be true about the harsh realities of the world, if I could do it then, I can do it even better now. Flaunt yourself. Definitely. 100%. I was doing some research around you and I read a statement you made about the power of infographics and data visualization to enhance your messaging. So that’s what I’m learning right now in school with the program I am in. I wanted to conduct research specifically with deaf 186 // DISABLED PEOPLE: THE VOICE OF MANY.

and hard of hearing students examine what accommodations that they need, the accommodations that are being provided, how many are involved in the public education system, to begin with. Oftentimes, they’re very separated from mainstream education as they have deaf and hard of hearing schools and programs. I was mainstreamed my entire life and oftentimes I was the only one with hearing aids in the class. That basically meant that everyday I walked into class, I had to give away so much of my brain power to teach and remind educators about my accommodations only for it to hardly be followed through, which to me, I think is absolutely unacceptable. So I want to research more into the segregation that we deaf and hard of hearing people experience in education and I want to take all of the various research topics and convey it in a way that is comprehensible to the majority and that makes people care. And I can leave that for the infographics to portray a rather creative visual. And so when you’re having these conversations and making different outputs, are you, would you say, personally positioned within it? Yeah. I definitely include and use my lived experience as one of my biggest assets because that’s another thing I wanted to be centered in my movement. Our experience matters and oftentimes disability justice/ advocacy circles, spaces and organizations are not lead by disabled people. I find it extremely ironic that able-bodied people will work at an organization catered to accessibility and disability justice but yet fail to provide such opportunities to the people they allege to be fighting for. It’s a complete contradiction. Many able-bodied people enter this field of work for the wrong reasons, and not because they actually care about the evolvement of a marginalized community. We are the experts on our lives; we’re the experts on our needs and what works for us based on our experiences rooted in ableism and


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negligence. People fail to understand that ableism involves medical negligence, illegal activity, financial fraud, lack of marital, and parental rights. So I most definitely position myself in conversations within advocacy circles because I can speak as to what I had and didn’t have growing up that were extreme necessities for childhood development and the transition into adulthood.

What do you think are some of the cultural factors that reinforce conversations around disability and impairment from your own perspective? So there’s this huge argument around Identity first-person language that I think particularly with deaf and hard of hearing is that so often it’s labelled as an impairment and the deaf community actually object to that notion regardless of what your audiogram reveals. If you have profound hearing loss, you are deaf. Regardless if you identify with deaf culture or not. To hearing people, we will always be deaf and there’s nothing wrong with pridefully claiming that identity. DISABLED PEOPLE: THE VOICE OF MANY. // 187


We’ve touched upon it, but I wanted to ask, in your opinion, what role does education play in inclusivity around disability movement? I think that a sole reason as to why I’m most excited to produce my children’s book and that animated TV series because I’ve always had a love hate relationship with school. I admire and respect education. I think we’re all entitled to education and it wasn’t too long ago that deaf children were allowed in educational institutions, so there’s that part of me that wants to keep defying the odds and take advantage of that privilege. However, ableism in education is extremely rampant, and many fall through the cracks because they’re just tired and have lost the energy to fight. I also believe that we can make education fun for the kids; you can make it comprehensible for them so that they can understand and share with their classmates their experiences of disability. As disability is so broad and there are many different types of disability - according to Canadian statistics one-in-five have a disability so it’s very common, you know, but it is just not talked about enough. And so I want teachers to be able to initiate that conversation with their student, and not from a standpoint of someone from the class, but just opening up the conversation and spreading awareness about it and allowing that conversation to take place. You know, children often don’t know why, but children are very curious. They’re smart young ones who deserve to be taught in ways that will enhance and encourage them to utilize and advocate for every service that education has to offer. Give them a safe, inclusive, diverse, but also fun space to ask questions, you know? So mainly I want staff and school boards, teachers to be educated on the matter and I want them to be able to undergo some kind of mandatory workshop at the beginning of the school term because I don’t care if there’s one autistic kid in the whole school or one deaf kid in the whole school, you have to know how to 188 // DISABLED PEOPLE: THE VOICE OF MANY.

accommodate them from a legal standpoint. That’s really what I’m concerned about the most. So it really starts at the foundational level and if the teachers don’t know then how are the children supposed to learn? From a very young age, disability and accessibility needs to be included in the education curriculum. And so I believe the board needs to feature this work as this kind of work because you have the standard ADA (American with Disabilities Act) or the AODA (Accessibility for Ontarians with Disabilities Act) that you are legally required to complete as part of your employment training. An online course isn’t enough. One workshop for the entire semester or academic year is not enough. There needs to be accountability standards secured in place and if that protocol is breached, there needs to be repercussions as severe as traumatizing a disabled child in education is. Why then do you think it’s not part of the training. Why do you think it’s not something that’s already been sort of supplemented within their training as a teacher? Well, it is to an extent, but what I’ve noticed even in employment, for example, whenever I’m getting a job and we would have to do AODA training, they often talked about customers with disabilities but they never talked about disability within the organization and workers rights. I would ensure that not only are disabled people included in the recruitment process for hiring purposes, but to enforce workers rights. I have yet to come across a job wherein disability discrimination is included within workers rights. More disabled people need to be in positions of power for this to occur accurately and at much higher rates. So then what do you consider to be some anti-ableist strategies towards equity and, in your opinion, are there any clear defined strategies that you would say help to break down a very ablest narrative?


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I think strategies start with the language first, and you know, how individuals have their own chosen identity, especially around disclosures as well - whether or not they want to disclose certain information and to be able to respect that and not have to prove constantly what your accommodations are, that’s a huge thing as well regarding the education system and access. [*Pause*] It is very individual and while I want to work, from a perspective of the group because it’s a common goal, the only responsibility or power that I have really is to be able to empower other disabled youth, children and adults, so that it can end up becoming the common goal in more spaces. The common goal referring to creating that safe space and demanding the rights they are entitled to within any institution.

Disability is complex and much as it is simple. You have to constantly go back and prove your disability time and time again. It is seen at every institution as well, and it’s problematic and time consuming and enforces too many barriers. It’s not right, it’s not fair. Disability is broad and so some might have physical needs, some might have medical needs, intellectual, whatever it is, but at the end of the day, it’s the common goal of getting to that place of being able to say and enforce “we all need access”, and to have those access needs met.

100% You have also spoken about the ‘government policing of disability’ and so can you discuss what you meant by that and how that plays out in the everyday? Absolutely. I mean particularly with the Ontario disability support program you constantly have to prove what your ‘needs’ are, say you have a documented disability and unfortunately it’s not set that way for everyone. DISABLED PEOPLE: THE VOICE OF MANY. // 189


So how often do you have to prove your needs? I mean, it’s been, it’s been changing quite often, but I believe it’s like at least every three to five years, and it’s just ridiculous considering the fact that someone like me who was born with profound hearing loss, that’s not going to go away. Period. And I mean, I think it’s really important when you do speak around things such as disclosure, maybe not wanting to have to sort of constantly go through that process again and again…. Exactly, yeah. And so I guess my final question. I saw a picture of you in a top that says I’m not your inspiration and so I want to hear your thoughts on that? Many disabled people growing up, we are used to seeing this online all the time. You know on Twitter, on Facebook with videos and such. Unbeknownst to many, that ‘first time’ may take years, and a lot of able-bodied people start declaring ‘how inspirational, how heartwarming, which is actually very detrimental because not only are you showcasing a disabled child’s trauma, you know, something that is quite traumatic and life-changing and kind of emotional without their consent, but also that there are so many other underlying factors that they’re not otherwise seeing, especially with language, for example, within the deaf community. There’s a huge argument around sign language and how American sign language, whatever type of sign language that deaf children should have access to sign language at a young age. Many deaf children go ‘Whoa. Okay, so I’m removed from sign language. Removed from culture. The only issue with that is that language deprivation is so prevalent within the deaf community so when I was in speech therapy I received my hearing aid at 10 months old when most started speaking, so I was diagnosed very young. And there are others who were also diagnosed very young or later when they’re in school and they’re not 190 // DISABLED PEOPLE: THE VOICE OF MANY.

catching up. They’re not participating very well because they’re having difficulty hearing. And so language deprivation is a really big issue in the deaf community which is the main issue with those ‘inspiration porn’ videos. You know, hearing aids and cochlear implants do not solve language barriers. You know, these children, they’re missing all of that. And has the hearing aid helped me, absolutely, but I also had access to language. And even with the access I’ve had, I also had a ton that was missed or took a lot longer to acquire over the years than if I had access to sign language at an earlier date. This is my mode of communication and deaf children should have access to both in order to be successful. And oftentimes because of inspiration porn, you get so used to it, you internalize it. So we start to belittle or change the meaning of our own works, like ‘Oh, I’m here to inspire people’ and it’s very detrimental mentally, you know because we’re not bigger or better I mean that’s very damaging to the ego. It’s an idealistic vision to have about oneself, and that’s not the way society treats us in regards to the needs that have to be met in order to be successful i.e. education, employment etc. So it’s almost like acquiring this awful notion of ‘I have to be an inspiration or I’m nothing, you know?’ And it’s just unbelievable. We have to do our best do debunk this. It’s just really about having equality, you know? No, hundred per cent I guess then my final question to you would be then, what advice would you give, and what has been really helpful to you in terms of finding your own position within it?. I would, I would tell them not to be afraid to explore their identity, I would say do your research because that’s something that really helped me when I was younger and I was feeling really alone. I decided to go on YouTube and search for hearing-loss and came across a onewoman show called ‘Lost In Sound’, and I mean, it resonated with me so deeply.


It was a comedy play about hearing loss that I thought it was hilarious and it was something that I wanted to get into myself. I ended up contacting the woman and we went back and forth several times over the year and it really made my senior year of high school that much more valuable. It really built confidence in me. Knowing that I could also go out and do that. So I would tell young people, don’t feel afraid to speak up about your life, no matter how many times you are shot down because that will happen, but continue to fight, right?

“I RARELY, IF EVER SAW PROPER REPRESENTATION OF MYSELF ON TV GROWING UP. I WAS INCREDIBLY OBSESSED WITH TELEVISION, AND I NEVER ENCOUNTER A YOUNG BLACK GIRL WITH HEARING AIDS. IF I HAD BEEN SUBJECTED TO THAT, I THINK I WOULD’VE SPENT A LOT LESS TIME IDOLISING NON BLACK AND SPECIFICALLY WHITE FEMALE STARS AS TO IMAGINE MORPHING INTO THEM BECAUSE MY OWN EXISTENCE SEEMED SYNTHETIC.”

But also just don’t feel afraid to explore it and to research more about it and to learn more about it. You know, I think, I think there’s always a little bit of fear and vulnerability that comes with disability in general, but particularly those who are born with it, or those who acquire a disability at a very young age because there’s so much stigma already attached to it. And being very young and your brain isn’t fully developed and you internalize the messages and so often you’re just afraid to step outside of yourself and embrace your identity and actually learn about it and learn what works for you. That is the most powerful and empowering thing that you can do for yourself because you can be the expert on your life. Interview by Rayvenn Shaleigha D’Clark.

- Kalia Douglas-Micallef.

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DEAF ACCESSIBILITY FOR SPOONIES.

SERENA KATT, LONDON COLLEGE OF COMMUNICATION, UK.

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Serena Katt explores how illustration can be used as an active tool for understanding, interpreting and reevaluating dominant narratives and discourse about historical events. She is interested in exploring and highlighting the ways in which history is recorded, suppressed, remembered and distorted.

A response to the Disability tasks but specifically your addition of ‘Deaf – Accessibility for spoonies’ which I think is a thoughtful, honest and meaningful contribution to our readership of international academics, students and creatives. This was a touring show, which visualises the protagonist’s invisible pain, by painting the affected parts of her body.

“The work that goes behind being his true self”

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I loved how Khairani Barokka talked very clearly about the existence of a large gulf between what one person


perceives as pain in their own body, and what another person, looking in, can perceive/believe/ understand. She says: ‘The shock of distance, of misunderstandings from human beings so close to our bodies, to the truth as we inhabit it in our bodies, can be something else entirely.’ Not being able to show someone how she felt, on an experiential level, and experiencing ‘miscomprehension’ led her to develop the show, which takes into account all aspects of her being (again, touching a lot on intersectionality) - not just her disability. I was interested in thinking about how there is a gap between any two humans, where experience can never be fully shared. She talks about ‘the sheer impossibility of human communication’ which is why she makes art, to ‘attempt to bridge it anyway, by writing, speaking, creating, by existing in groups.’ She is interested in framing disability (disabled) as the opposite of enabled, rather than unable - which is psychologically important to her because as a woman of colour, she is so often told she is not valuable or equal. It was important for her to highlight her experiences: ‘I wanted people to know: academia and the arts, for some of us, are contact sports’ - they can be bruising and painful for disabled participants, and many of us are too rarely aware of this. She also really emphasised that ‘Women’s pain in particular, and brown women’s pain... is underestimated and undertreated.’

She says she paid so much attention to the show being accessible to others but gave up on including herself in this because it felt impossible (lack of local funding from Indonesia - a transnational issue, no means to pay herself etc.). By not working to alleviate her pain as much as possible she feels she actually denied herself the truth of her pain, in a show about ‘making pain apparent’. She concludes that we need to remember that accessibility should take into account all parties - not just the audience. She also realises the need for self-care and asking for help as well as doing more justice to her own needs. This article asks both for more awareness in the reader, particularly around invisible disability, and also for the reader to bring themselves in more. I think even the act of reading it could give a lot to students. It could be used as a starting point for these two points: (1) reflecting on invisible disability and (2) reflecting on your own needs, and how you might take better care of them or where you could ask for more help whether they are disability-related or not.

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THE ERASURE OF BLACKS FROM HISTORIES OF AUTISM.

KERIMA Ã&#x2021;EVIK.

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Disabled Black activist and mother to an autistic son, Kerima Cevik studies Intersectionality, Special Education, Disability, Special Education, and Autism Spectrum Disorders. Legislative advocate and a activist for autism and social justice, she is an independent researcher who speaks at autism and disability rights conferences and workshops. She is currently promoting the concept of Pay it Forward activism and autism community building through resource generation, crowd funding of crisis mitigation, and leveraging social media. She blogs about autism, disability rights, and life with her nonspeaking autistic son at The Autism Wars (theautismwars. blogspot.com), intersectionality at Intersected (intersectedisability.blogspot.com), social justice at Brave (overcominghate. blogspot.com) and is the founder of the Amplify Autistic Voices project at (amplifyautistics.blogspot.com).

In the struggle to have the voices of intersected autistic populations heard, the critical importance of Black autistic savants and the need to include them in autism history cannot be understated. Their existence and the inadvertent documentation of their lives due to savant qualities despite their historic status as an oppressed minority serves as a series of timeline markers in periods of history particularly when African Americans were enslaved; therefore neurodivergence would not have been noted except as a serious detriment to be dealt with through deadly force. In a present day autism conversation rife with structural racism and stereotypical conclusions and analyses drawn from misinterpretation of research on disparities in healthcare, education, and services for the Black autistic population, these indicators that intersected autistics existed long before Kanner and Asperger were tweaking theoretical pathologies of what autism was should be part of any timeline in autism history. Just look through a few people generally accepted as fitting the criteria for autistic savant by virtue of the observations of characteristics each expressed while others documented their savant abilities. Thomas Fuller “Thomas Fuller, an African sold into slavery in 1724 at the age of 14, was sometimes known as the “Virginia Calculator” for his extraordinary ability to solve complex math problems in his head. Rumors circulated that he was a savant, since he could not read or write, but that was not uncommon among slaves at the time. Some believed that he may have gained his skills with math in his homeland in Africa. His owners, Presley and Elizabeth Cox of Alexandria, Virginia were also illiterate. They never sold him so that all his life he remained in one place’. “Thomas Fuller was significant in that his abilities were used as proof that enslaved Blacks were equal to whites in intelligence, which fueled some proabolitionist discussion.” (Wikipedia) DISABLED PEOPLE: THE VOICE OF MANY. // 195


Thomas Wiggins “Thomas “Blind Tom” Wiggins was an African American musical prodigy on the piano. He had numerous original compositions published and had a lengthy and largely successful performing career throughout the United States. “ Wikipedia Tom was blind at birth and descriptions of his behavior onstage and off have experts concluding he was an autistic savant. Tom was also called “The Last Slave In America” because his owners had him declared non compos mentis in order to continue ownership of him after the Civil War. Born: May 25, 1849, Harris County, Georgia, GA Died: June 14, 1908, Hoboken, NJ Eugene Hoskins It is quite clear that Eugene Hoskins was an autistic savant. Eugene was 24 years old in 1920 when Hiram Byrd used him as the subject of a a research paper about his calendar savant abilities. Hoskins loved trains and hung out at the train station in Oxford, Mississippi. Byrd’s vulgar description of him concluded that he was entirely African no doubt based upon a superficial evaluation of how dark his skin was rather than any proper research of Mr. Hoskins’ origins or kin. In the article “Eugene Hoskins Is His Name” subtitled “The long-forgotten story of a black autistic man in Oxford, Miss., who crossed paths with William Faulkner,” it was said that Hoskins refused any money for displaying his abilities of helping people learn when their train was scheduled to come or go from the station. He lived with a white family who owned a store near the train station. Byrd’s documentation of his existence and symptoms marks a place in autism history that makes it clear that Black autistics were known when researchers were doing work on defining autism. Mr. Hoskins’ existence therefore belongs in any history of autism. 196 // DISABLED PEOPLE: THE VOICE OF MANY.

Noel Patterson Noel Patterson was the subject of intense study who lead to breakthroughs in understanding the mechanics of autistic savant syndrome. He was 19 during the period of the study in 1986, part of a documentary on autistic savants called “The Foolish Wise Ones” that aired the same year. He was a musical savant whose ability involved tonal structures and relationships. He could faithfully reproduce any musical composition he heard on the piano and could play said tune on the piano with one hand while picking out correct notes on a guitar with the other. Unlike other musical savants, Patterson, who was in a group home in Britain, was not given the intensive musical training, exclusive of everything else needed to fully develop his talent. Instead his talent was treated not much differently than Blind Tom Wiggins’ gift, a curiosity to be displayed for researchers or visitors to the group home. Noel wasted his days spending a limited amount of time on the piano and the guitar. Noel Patterson’s story is a good example of how Black Autistics are seen by researchers, care providers and others as resources for amassing data who can also serve as scenery for those who write about them or film them. Savant abilities were only of use as lab research data and parlor tricks. No one ever thought to enrich Mr. Patterson’s musical skills to the degree that Blind Tom Wiggins’ or Derek Paravicini ‘s abilities were nurtured and perhaps carve out a career for him. Instead, books were written about him and he was the subject of a documentary, after which, they decided he should spend his days weaving and being made to use wood shop tools. I wish I could say that this attitude towards Blacks who are not upper middle class or wealthy has changed. I don’t see much change.


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Stephen Wiltshire Stephen Wiltshire MBE, Hon.FSAI, Hon. FSSAA is a British architectural artist. He is known for his ability to draw from memory a landscape after seeing it just once. His work has gained worldwide popularity. Wikipedia Born: April 24, 1974 (age 41), London, United Kingdom Education: City and Guilds of London Art School Artistic savant Stephen Wiltshire is another good example of how erasure works in the history of race and autism. Oliver Sacks devoted an essay to him in his book “An Anthropologist on Mars.” Sad isn’t it, that he is mentioned four times in Steve Silberman’s NeuroTribes: The Legacy Of Autism And the Future Of Neurodiversity” only as someone Sacks wrote about who helped develop his theories of autism, as an object of Sack’s compassion rather than a Black autistic savant who is one of the most famous artists in England. Unlike Noel Patterson, Wiltshire, who was very young when he was featured in the documentary “The Foolish Wise Ones” had the advantage of a school and family who recognized his talent and professional architects who acknowledged it and stressed he be educated and this talent nurtured and developed fully. He is able to support himself and with his sister’s help, he travels the world, drawing huge urban landscapes viewed through helicopter flights over the cities themselves. Stephen Wiltshire was allowed to develop his potential. Savants are so rare that regardless of race, their talents should be supported, developed and encouraged. My disappointment that Mr. Silberman’s publishers did not see the need to move this important role model for autistic children of color to the role of a historical figure but rather relegated him to scenery in the narrative of Oliver Sacks’ research is deep, moreso because Mr. Silberman did exhaustive research on this book. 198 // DISABLED PEOPLE: THE VOICE OF MANY.

This quick, tiny list of individuals excludes African American men and women who were inventors, academics, musicians, performing artists and researchers who, while not in the savant range, had documented trait descriptions that point to classic autistic expressions. No mainstream history of autism to date has bothered to discuss these individuals as people rather than scenery for those who documented their existence or used them as money making curiosities or experimental subjects. Consider that the existence in history of Black autistic savants shows genetic links to autism that might have helped African American families recognize, reconcile, and accept the divergence in their family members more readily. This took me a single page and roughly 8 minutes to research. Any of the authors who have published histories of autism could have done so as well. Meaning that erasure of people of color in general, and African Americans in particular from autism histories and autism policy is blatantly alive and well. Worse, few voices are shouting in protest about it. Until intersected populations within our community are acknowledged as more than genetic research material, until the very real disparities in health and therapeutic supports, assistive technology supports in educational settings, and race based special education disparities within public schools are addressed, until nonwhite stakeholders are made true and viable participants in building diversity centric autism policy on a national scale, structural racism will remain the ugly reality seated at the table of the autism community. As long as wealthy, white, cis parents dominate this conversation by excluding intersected community members nothing will change.


This deeply embedded structural racism that is silencing everyone who is not white and well off enough to use their privilege to impact public autism policy has been festering a very long time. The policies driven by this small privileged group benefit only a certain class and race of autistic people and their families while harming entire intersected autistic populations and those who care for them. The injustice in this reality is that much more shameful because so few stakeholders with privilege care as long as they believe their own offspring or their own agendas are not affected. I have been giving voice to this for four years. The new histories of autism make it clear that voices of dissent like mine are lost in the perceived triumphs of all who benefit from histories presenting autism in ways that have not deviated much from what Dorothy Groomer relates in her account of what she confronted from medical professionals during her search for a diagnosis of her son Stephenâ&#x20AC;&#x2122;s divergence in the documentary Refrigerator Mothers: www.youtu.be/DtKJ0PCz4QI

Atlanta BlackStar atlantablackstar.com/2014/04/15/6black-savants-will-amaze/ Google search topic: Black Autistic Savants Thomas Fuller (Mental Calculator) en.wikipedia.org/wiki/Thomas_ Fuller_(mental_calculator) The Ballad of Blind Tom www.blindtom.org The Wise Foolish Ones documentary youtu.be/KCBdZ7rI9jI Eugene Hoskins Was His Name www.slate.com/articles/health_and_science/ science/2012/02/eugene_hoskins_the_ black_autistic_man_who_crossed_ paths_with_william_faulkner.html An Anthropologist On Mars: Seven Paradoxical Tales by Oliver Sacks www. amazon.com/dp/0679756973/ref=cm_ sw_r_tw_dp_c2EOwb1S0TGBG

Particularly NeuroTribes is a fine if imperfect history. I find, however that no history of autism appears to be worried about including nonwhite people in any capacity that is not objectifying. I look forward to this changing, but Iâ&#x20AC;&#x2122;m not hopeful. The Eight minute Black Autistic Savant Research exercise sample of resources (intended to make the point that this could have been done easily by anyone researching the topic):

DISABLED PEOPLE: THE VOICE OF MANY. // 199


THE PORTRAYAL OF DISABILITY IN FILM.

HOPE CUNNINGHAM, LONDON COLLEGE OF COMMUNICATION, UK.

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Hope Cunningham is a writer with a focus on comedy-drama scriptwriting for TV, set to graduate from MA Screenwriting at London College of Communication in the summer. Hope contributes to Shades of Noir as a content developer, writing articles that explore media, race and her personal experiences.

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‘No sound in the film is more likely to induce nightmares than the voice of its main villain, Red’, states Reggie Uwugu in his New York Times titled Why Lupita Nyong’o’s ‘Us’ Voice Sounds So Creepy. Referring specifically to Jordan Peele’s newest horror film Us, Red is a doppelganger of the character Adelaide, both of whom are played by Lupita Nyong’o. Uwugu continues that ‘Red becomes the movie’s most unsettling enigma the moment she first opens her mouth’. and describes her speaking voice as ‘a dyspeptic rasp, as if her vocal cords have been gnawed through by rats.


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Nyong’o explained that the strained vocal quality of the film’s villain was based on a condition called spasmodic dysphonia which results from trauma. It is a neurological disorder that causes involuntary spasms of the larynx. Learning about the disorder helped ground her performance as she studied the speech of people like attorney Robert F. Kennedy Jr. Nyong’o has come under fire from activists because of this, and rightly so. RespectAbility President Jennifer Laszlo Mizrahi said: ‘Connecting disabilities to characters who are evil further marginalised people with disabilities, who also have significant abilities and want to contribute to their communities just like anyone else’. Critics have said that Nyong’o’s characterisation didn’t necessarily mean to disrespect people with the condition and while I must admit I did agree with this at first, the more I engaged with the topic, the more I realised that it was not my place to decide whether this was offensive or not. Cinema is guilty of a long history of portraying various disabilities in a negative light. A popular trope is that of the ‘evil cripple’: This is usually a villain who also suffers a debilitating physical condition, often taking the form of paralysis requiring the use of a wheelchair. This character is usually put in contrast with a morally upright and physically ‘perfect’ hero. Whether intentional or not, this reinforces cultural ideas about disability as the ‘evil cripple’ is negative or inferior. Disabled people should never be feared; while Us has done an amazing job for the representation of black people in the horror genre, we should not be afraid to speak out and be honest about where it went wrong. We need to engage and amplify the voices of disability activists in order to constantly educate ourselves and ensure representation is positive and realistic for all people.

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Bibliography: Dem, G. (2019) It’s not just Lupita Nyong’o, horror films have long demonised disabled people. Available at: http://gal-dem.com/ us-horror-films-have-long-demoniseddisabled-people/ (Accessed: 12/4/19). Powell, R. (2018) What Hollywood Gets Wrong About Disabilities. Available at: https:// www.huffpost.com/entry/opinion-powell-whathollywood-gets-wrong-about-disabilities_n_5a9 ef0ffe4b0d4f5b66b1882 (Accessed: 12/4/19). Pulver, A. (2019) Lupita Nyong’o apologises after Us ‘evil’ voice disability row. Available at: https://www.theguardian.com/film/2019/ apr/01/lupita-nyongo-apologises-after-usdisability-voice-row (Accessed: 12/4/19). TV Tropes (2019) Evil Cripple. Available at: https://tvtropes.org/pmwiki/pmwiki.php/ Main/EvilCripple (Accessed: 28/4/19). Uguwu, R. (2019) Why Lupita Nyong’o’s ‘Us’ Voice Sounds So Creepy. Available at: https://www.nytimes.com/2019/03/24/ movies/why-lupita-nyongos-us-voice-soundsso-creepy.html (Accessed: 12/4/19).


GROWING UP WITH A DISABILITY. FEDERICO MARTELLO.

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Federico Martello is an Italian singer, author and composer. His voice is described as a barytenor, and the voiceprint is a fusion of the studies of opera, soul and jazz improvisation (Academy of Opera – Diapason Academy in Siena – course of modern singing and jazz improvisation – Vocal Classes Academy in Milan. Federico was born in Partinico (Palermo) - Italy – 1st June 1982. Since he was a child he showed a marked and natural sense for music and singing. Despite his motor disability since he was born, he

continues with this passion for music and develops his talent, chasing and pursuing its goals, thanks in part to his tenacity and strength of will, both to aid and support of his family. After finishing his studies, Federico began working in Palermo, then he moved to Siena where he attended the University, worked and at the same time attended the Academy of Music Diapason, studying singing and modern jazz improvisation with the teacher Clara Cosci. He took part as well in some concerts organized by the Academy and some musical entertainment in Chianti. DISABLED PEOPLE: THE VOICE OF MANY. // 203


“ONE JUDGE ON THE PROGRAMME REMARKED THAT SHE WOULDN’T VOTE FOR ME BECAUSE I WAS IN A WHEELCHAIR; THAT I COULD HAVE ‘MOVED’ THE ‘OLDER MALE’ JUDGES BUT NOT HER. RUSSIAN VIEWERS ASKED FOR THE JUDGE TO BE REMOVED FROM THE SHOW AND I HAD THE UTMOST SOLIDARITY FROM THE AUDIENCE ON THIS MATTER. MY CONCLUSION IS THAT THE LESS SPACE GIVEN TO DISABILITY IN SHOWBIZ, THE MORE THE VIEWERS WILL FACE DIFFICULTIES IN ACCEPTING DISABILITY AS NORMAL. ” - Federico Martello

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In 2005 Federico was admitted at Vocal Classes of Luca Jurman in Milan, practicing vocal and breathing techniques (RPA). Federico voice is described as a barytenor. His voiceprint is a perfect fusion of the studies of opera, soul and jazz improvisation. I will not say that growing up with a disability is easy or beautiful, because that would be a lie, first to myself and then to you. It all happened during childbirth, a lack of oxygen and the inefficiency of some health workers have created permanent damage, called spastic quadriparesis. I lived a lot of my childhood in my mother’s lap because I couldn’t sit up, but as a stubborn woman from Southern Italy took me every day to do physiotherapy and I began to take my first steps under the gaze of the people who observed me in a strange way as if I were a freak of nature. Many times my mother said to me “come on, let’s go for a walk”. I cried as often as I could because I was ashamed of people’s eyes which intimidated me. She said: “Today they look at you, tomorrow they will smile at you”. One of my mother’s greatest teachings. But for a young boy who faces life having to challenge his own fears and not being able to do what other friends did, it was not so easy. I saw my schoolmates play football, run and go for long walks whilst I was forced to spend my long afternoons in endless physiotherapy sessions.

made me feel good within myself and that distracted me from dark thoughts. During a feast in my hometown, there was the concert by the singer Alex Baroni (who died prematurely) and I was carried away telling everyone “I want to sing like him”. I started going to singing lessons and from that very moment I understood that that was my vocation; it was something that gave me energy, that gave me physical and mental well-being and when I sang in public people began to look at me with different eyes as the emotion I transmitted to them, they were no longer for my uncertain and difficult walking. It was almost a form of redemption after years of suffering, a way of saying “I am this too”. I attended several singing academies perfecting myself, studying a lot, and in the meantime worked full time because state subsidies certainly do not allow you to live in a dignified way; especially in light of the fact that I wanted to live alone and build a life away from the protective wing of my family I wanted to be autonomous and independent. At the age of 20, I realised this project of mine by moving to Milan. Since then, I have participated in an infinite series of festivals and contests. I have many won prestigious awards, but one day whilst watching Italian television I began to wonder why I didn’t see any singers with a disability. Even those few events I attended that were broadcasted on TV, the directors cut the footage of me walking on the stage, instead optioning to show me already in front of the microphone as if my disability were something to hide! I began to ask myself why?

At the age of 10, my father gifted me an electronic piano and I discovered my passion for music. I enjoyed playing at family parties as it was something that

I started to apply for various talent shows including X Factor, Got Talent, The Voice and when attending casting, whilst the DISABLED PEOPLE: THE VOICE OF MANY. // 205


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producers were delighted by my voice and my skill, my disability was a problem… I did, for years, a lot of castings and about 8 years ago a producer said to me, without much hesitation, “we don’t want to do pitying on television”. It was like receiving a punch in the stomach; a mortifying and ignoble phrase that left me dumbfounded and I left that casting angry, disappointed, bewildered. At that moment I said to myself “never again in Italy!”. Television is in the hands of unprepared and unsuitable people who hold high positions. Here I say it with anger and pain. From the time of the late Pierangelo Bertoli and Luciano Tajoli that a singer with a motor disability did not appear on television (and not because there are none, regardless of me). 206 // DISABLED PEOPLE: THE VOICE OF MANY.

For Italian television, we did not exist. It is time for television to emerge from this obscurantism and extreme ignorance which contributes to the exclusion of disabled people. They need to show us and NOT hide us as if we did not exist. Television, much like music, is a great tool of communication. it is therefore desirable that it becomes a means of inclusion, of bringing the masses closer to the weakest. I started a long career abroad in 2010 and I did concerts in the United States, Russia, Gibraltar, Spain, Poland, Siberia and wherever I went I left my mark, I was appreciated for my talents, for my gift and not judged by my disability which worsened following a serious injury in 2012 that has forced me to move in a wheelchair most of the time.


Indeed my disability was considered an added ‘value’ and the public saw me an example of strength and hope. Abroad. Until my manager a few months ago decided - on his own volition - to send my application to All Together Now Italy with a video of a show broadcasted by the first Russian channel and seen by more than 60 million viewers. Two hours later I received the call to participate in the first casting and a few days later I was called back and invited to attend a casting in front of the director of the show who said to me “I don’t see a man in a wheelchair, I listen to an excellent singer who has a lot to give to Italy”. I experienced this in Italy with the awareness that there are many, besides my family and friends, who really believe not only in my abilities but who places a sincere trust in my possibilities and it was the best gratification I could receive after my participation in All Together Now. A somewhat unexpected thing happened. One judge on the programme remarked that she wouldn’t vote for me because I was in a wheelchair; that I could have ‘moved’ the ‘older male’ judges but not her. Russian viewers asked for the judge to be removed from the show and I had the utmost solidarity from the audience on this matter. I wanted to be evaluated for how I sang and not because I was in a wheelchair. Even the Russian television channel used my performance as promotion on their social networks, reaching about 3 million views, becoming one of the 10 most viewed videos of Russia1 (the second Russian TV channel). In this response, I often think that a sociological study on the behaviors of viewers would have been interesting.

I attended the same show in Italy; the Italian programme has given significant space to my disability (perhaps because it has been many years since there has been disabled singer on television), and yet the viewers were divided between those who loved me immediately and those who concluded that I was on television only because of my wheelchair. In Russia it may seem strange that television programs provide space to deserving disabled singers for many years, and in this respect I found the viewers were very used to our presence. As assessment is and should - only made solely on skills (in my case singing) and not on disability. My conclusion is that the less space given to disability in showbiz, the more the viewers’ will face difficulties in accepting disability as normal. The possibility to normalise our presence also on TV shows and to make it clear that no one can say “you can do it that, you cannot do it this”, because today there are people with disabilities who, for example, drive F1 cars, who ski, who play football, etc. I firmly believe, always, that artists (and I characterise myself as such in my own small way) have a moral duty to convey positive messages, tolerance, help, support, smile, of patience, of human love and I am very happy that today in Italy I am called “the singer who has broken-down prejudices”; “the singer who has broken down barriers”. There is still a lot to do, but as I often say, you have to start somewhere! To listen to Federico Martello’s work, please use the following links: youtu.be/o_xKwwCBKas www.youtube.com/watch?v=ODwdJn2uKmo www.federicomartello.it/ DISABLED PEOPLE: THE VOICE OF MANY. // 207


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LONG LOST LOVER.

POEM BY BEA WEBSTER, FILM BY SANDRA ALLAND AND ANIA URBANOWSKA, SCOTLAND

Long Lost Lover Bea Webster A yellow dawn breaks on the airport of my childhood Thick air of spices and warmth and tenderness Enters my nose and brings out a wave of nostalgia And here I am, the home of my soul Don Meuang embraced me like a long lost lover Over the Temple of the Dawn the sun rises Where a sea of saffron monks lines up to receive alms Upon the old Venice of the East Its ancient routes take me to my family Bangkok embraced me like a long lost lover Over the Chao Phraya River the sun shines on its muddy waters With its Buddha head buried in the tree From war in times long gone When it was once showered in golden leaves Ayutthaya embraced me like a long lost lover Over the Gulf of Thailand the sea glitters Hermit crabs make their homes in discarded plastics Feasting on watermelons from beach combers Littered with gay streets; tolerated, but no rights Pattaya embraced me like a long lost lover Over the hilly rice plains the rain gives life My mechanical ear picks up clattering, thumping, tapping And shouts of â&#x20AC;&#x153;Twenty bahts! Cheap! Cheap! Cheap!â&#x20AC;? Merchants lay wares of ancient times. Chiang Mai embraced me like a long lost lover From the Andaman Sea to the golden plains The Land of the Smiles always greets me warmly Even though they see my broken ears and say That I must have done wrong in my past life Thailand embraced me like a long lost lover To view the video, visit: vimeo.com/246089479 DISABLED PEOPLE: THE VOICE OF MANY. // 209


Bea Webster (writer/performer) Bea is a mixed-race queer deaf woman living in Glasgow. She graduated from BA Performance in BSL and English at the Royal Conservatoire of Scotland. Her poetry appears in in Stairs and Whispers: D/deaf and Disabled Poets Write Back and Magma. Theatre credits include Kaite O’Reilly’s Peeling, Red Ladder Theatre’s Mother Courage, and Royal Shakespeare Company’s The Winter’s Tale. Sandra Alland (co-director) Sandra is a Glasgow-based writer, filmmaker and interdisciplinary artist. As co-editor of Stairs and Whispers, she collaborated on an accessible print-/e-anthology with text, visual poetry, audio and film-poems. Sandra was recently Guest Editor of Disability Arts Online, and worked with Bea Webster on ‘The Social Currency of Voice’ for John Hansard Gallery. Her latest collection of short stories is Anything Not Measurable Is Not Real (Proper Tales Press). Website - blissfultimes.ca

Credits Long Lost Lover Film Stills (images 74 and 75) Credit: Bea Webster in the film ‘Long Lost Lover’, by Sandra Alland and Ania Urbanowska. Photo by Ania Urbanowska. Long Lost Lover A film by Sandra Alland and Ania Urbanowska. Composed in English and BSL by Bea Webster. Performed by Bea Webster. Projected photos by Klarissa B. Webster. BSL interpreting, translation consultation and voice-over by K. Yvonne Strain. Part of Stairs and Whispers: D/ deaf and Disabled Poets Write Back (Nine Arches Press, 2017), edited by Sandra Alland, Khairani Barokka and Daniel Sluman. Reproduced with permission of the authors. Tags: 21st century poems British Sign Language (BSL) D/deafness English home identity scottish poems Thailand

Ania Urbanowska (co-director) Ania is a Polish-born filmmaker and editor based in Edinburgh. She creates experimental and documentary films, and collaborates on A/V performances and cross-platform projects. Her editing work includes ‘Where We Are Now’ and ‘These Are My Hands’. Recently she collaborated with Sandra Alland on four film-poems, and the multidisciplinary performance, ‘Equivalence’ (Barbican/Anatomy). Website - aniaurbanowska.com/

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“...EVEN THOUGH THEY SEE MY BROKEN EARS AND SAY THAT I MUST HAVE DONE WRONG IN MY PAST LIFE THAILAND EMBRACED ME LIKE A LONG LOST LOVER.” - Bea Webster.

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DYSLEXIC BUT NOT DUMB: STAFF EXPERIENCE. Scenario: Melinda is a BIPOC academic senior member of staff in a department and was invited to attend a meeting at another campus. She was new to the meeting only having ever attended one previously so was not familiar with all the senior people in the room which consisted of Deans, Program and Course leaders who all knew each other.

“Out of approximately 11 senior staff members Melinda was one of three other black people at the meeting.” Out of approximately 11 senior staff members Melinda was one of three other black people at the meeting. Out of the other black staff members, one was a PA and therefore was not there to offer an opinion the other black staff member works in support services.

“The premise of the meeting was to discuss race-related issues so Melinda was particularly well-placed to offer a perspective on issues within the University from a Black queer disabled perspective.”

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The premise of the meeting was to discuss race-related issues so Melinda was particularly well-placed to offer a perspective on issues within the University from a Black queer disabled perspective. Melinda was used to being othered in meeting spaces that are attended by primarily white senior staff members and considered it her duty as representation is so minimal in particular spaces on campus to assert herself around issues in which she could comment from both a professional and lived experience vantage point. She was asked to consider, along with all attendees, any questions that they wished to pose to a white male in charge of a new building being built. Melinda is also a student at the University and has a strong sense that it is important to use meetings like this to alert senior management and others to experiences that are happening on their campuses.

“... the outcome as the message

she received was that the questions she posed, which seemed perfectly credible, was somehow irrational.” However, Melinda’s experiences were not received in the way she had hoped and she was deeply disappointed with the outcome as the message she received was that the questions she posed, which seemed perfectly credible, was somehow irrational. This part of the meeting had been supposedly scheduled for attendees to find out about the development of the new build and to ask any questions. Melinda politely waited to


speak and asked if the teaching spaces will be open plan? She explained her rationale; Melinda is dyslexic and had experienced difficulties in the past attending seminars in open planned teaching spaces as it is virtually impossible for her to concentrate in such spaces due the noise levels of people working beyond those spaces. In one open planned room, Melinda had struggled to hear what her tutor was saying and when she pointed this out her tutor responded by saying sorry there is nothing I can do about this as no other rooms are available. Left with no choice Melinda brought this up at the meeting in the hope that the new building would contain essential quiet spaces for working. However, when she mentioned that she had difficulty in this area and needed quiet to concentrate, a senior member of staff scoffing arrogantly and defensively said that it is not possible to have total silence ignoring the fact that open planned spaces can be exceptionally noisy.

“There was a side conversation between a couple of attendees accompanied by some laughing as though what had been said was somehow absurd. This made Melissa sad and she felt humiliated.” There was a side conversation between a couple of attendees accompanied by some laughing as though what had been said was somehow absurd.

“... it was as if at least 4 attendees felt it was acceptable to respond by mocking the question. It was apparent that some of the attendees had scant regard for the concept of intersectionality and furthermore the topic of the meeting which was race equality.” This made Melissa sad and she felt humiliated. New to the meeting and space it was as if at least 4 attendees felt it was acceptable to respond by mocking the question. It was apparent that some of the attendees had scant regard for the concept of intersectionality and furthermore the topic of the meeting which was race equality. The question was immediately dismissed and Melissa felt that the meeting and indeed the space was hostile, uncomfortable and not welcoming - perhaps because Melissa was not regarded as a senior member of staff on this particular campus. Luckily there was a person in the room that Melissa considered an ally who attempted to bring the focus back to Melissa’s original question. As a senior white member of staff she deliberately cited Melissa instantly framing the question because she was instantly in tune to what was going on and could see the dynamics in the room based on her many years of activism around the subject of race. DISABLED PEOPLE: THE VOICE OF MANY. // 213


IN CONVERSATION WITH LEROY F. MOORE JR.

SHADES OF NOIR, UK.

Leroy F. Moore Jr., is Founder of the Krip-Hop Nation (a movement that addresses ableism, or discrimination against disabled artists, esp. Black musicians marginalized because of racism AND ableism internationally) and the cofounder of Sins Invalid. Moore writes, lectures, and performs about the intersections of race and disability issues both in the United States and abroad. Moore is a leading activist on issues of wrongful incarceration and police brutality against people with disabilities. He writes, lectures, and performs about race and disability issues both in the United States and abroad. Moore is one of the founding members of National Black Disability Coalition. Shades of Noir sat down with Leroy F. Moore Jr. who is founder of the KripHop Nation (a movement that addresses ableism, or discrimination against disabled artists, especially Black artists), the co-founder of Sins Invalid (disability justice performance project that centres people of colour, queers, nonbinary and trans people with disabilities) and one of the founding members of The National Black Disability Coalition (NBDC). Moore writes, lectures, and performs about the intersections of race and disability issues both in the United States and abroad. We would like to thank Leroy for taking the time to speak with us. 214 // DISABLED PEOPLE: THE VOICE OF MANY.

Can we begin by finding out how Krip-Hop began? I am a poet, writer. I also do what’s known as Krip Hop which is an international movement working with musicians with disabilities which I have organised for the last 12 years. I have been to the UK a lot. I was in the UK in the 90s where there were a lot of disability movements in London and it is there where the story came to life and totally changed my life because it was the first time I saw black disabled people organising. Currently, I am looking into the impact of poverty and race in disability, but more so poverty and race in the US. So is Krip-Hop now more of an international with interactions from all over the world; how is it situated? Yeah, so it’s very much interaction, we just had in July we had an all-African disabled musician tour in places like Uganda, Congo, Tanzania, South Africa and the whole bay area. I’m about to go to South Africa in December to do a festival there and we have talked about doing a book together in order to highlight black disabled artists. Now we have great partners in the UK, Canada and multiple places elsewhere. Amazing! So how is the movement organised in terms of ‘space’? As it is obviously a very wide number of places, is it a formation in which different pockets of the community come together and organise events? How does that play out? Yeah. So it’s really different pockets of people and then we all connect through social media to see what each chapter is doing and that they’re doing their stuff. Krip


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“LANGUAGE, LIKE OTHER OPPRESSED GROUPS, WAS TAKEN FROM PEOPLE WITH DISABILITIES AND THE LANGUAGE WAS TURNED ON US TO OPPRESS US. BEFORE PEOPLE WITH DISABILITIES HAD CIVIL RIGHTS, A MOVEMENT AND ARTS, MANY HAD PLACED LABELS ON US LIKE ‘CRAZY, ‘LAME, ‘CRIPPLE’ AND ‘RETARDED’ ETC. OF COURSE, NOW WITH OUR CIVIL RIGHTS AND DISABILITY STUDIES AND CULTURE, WE HAVE NAMED OURSELVES AND HAVE USED THE NEGATIVE TERMS TO OUR OWN BENEFIT TO NOT ONLY SHOCK PEOPLE BUT TO RESPECT THAT THESE WORDS ARE OUR HISTORY AND WE MUST RECLAIM THEM AND FLIP THEM INTO A POLITICAL LENS. BUT TO DO THIS CULTURALLY AND POLITICALLY THERE IS A PROCESS OF UNLEARNING AND RELEARNING WHAT WE CALL KRIP-HOP NATION’S POLITICS. WE ALSO HAVE TO COME UP WITH OUR OWN WORDS, ORIGINAL THEORY AND POLITICS TO ESTABLISH A FRAMEWORK TO UNLEARN AND RELEARN IN OUR OWN EMPOWERING WAYS.” - Leroy F. Moore, Jr. 216 // DISABLED PEOPLE: THE VOICE OF MANY.


has objectives and goals so we ensure that together we each reach our goals through our mission statement and from then there they take it on their own. Like in Uganda where we did a couple of protests against the government and we did a fundraiser too. Amazing. So you yourself founded Krip-Hop and so can you talk to me about the name and why you decided to call it Krip-Hop specifically? Yeah. Certainly so Krip Hop, and particularly people in the US believe that the word ‘Crip’ is representative of the Crips and the Bloods. But, if you look closely into history one of the gang members had a disability and so like the whole gang were like ‘Oh, we’ll just call you Crip.’ So what we’re doing is taking it back and putting it into a political stance in order to redefine the term. How do you feel how the reception of the term ‘Krip’ and the movement as a whole has been received more on an international scale? Locally, here in the US where it is so ableist it really subverts the notion of the historic use of the term ‘Crip’ or ‘Cripple’. It’s the best skill that we have. Especially in HipHip, we most definitely get more love internationally compared to in the US. And what ways have you found to combat - de-sensitivity even - the ideas people hold towards the term and the community more generally in the US? Yeah, so we write a lot of articles, and arrange workshops. One workshop we did 12 years ago when the Krip-Hop Nation community started was around disabled and queer Hip-

Hop. Out there so when we come out and do our work it is very straightforward and plain speaking. We have the confidence and awareness to combat ableism. What I really do is education and advocacy around black and Brown disabled people particularly embedded within history and culture. In London, as you probably well know, there was a huge black disabled community in the nineties and now as it’s just gone, it’s like, cool. Yeah. So questioning what happened, why? Because they didn’t have any other space particular for that community due to the nature of their experiences. Racism has really destroyed black disabled movements. So I really wanted people to take away that I do a lot around racism and disability not only in Hip-Hop but also in regards to advocacy and Black Disabled History that has been erased from the cannon. I wrote a book called Black Disabled History 101 which talks a lot about Black Disabled arts here in the US whilst also revealing the history of our Black Disabled ancestors. If you think we don’t have answers, you’re wrong as we do! We are very tough in comparisons to other communities and we are just trying to highlight this history. So we are trying to get in school and other organisations in order to have Black Disabled Studies I was invited to go to Leeds University and it’s been like a year and I was like, wow so many of the academic in disabilities studies are white and that was only in the 90s.

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So you spoke quite briefly about your emphasis on education and some of your writing projects; are there any documents that can be publicly accessed for our audiences as I feel that they may benefit from and so in what ways, I’m just trying to think in terms of our audience for the document, is there any, um, is there any I can publicly access, cause I think it’d be very valuable for our audience and our students to see that, especially when it comes to these kinds of discussions. I think that’s always very valuable to see. I think just for anyone who was really interested in that, that aspect of disability studies. Yeah, we have a lot of information and resources available on the Krip-Hop and I also have a YouTube channel where you can find out more about Disabled History and Black Disabled History 101.

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I do agree with you that the way in which aspects of the disability narrative is modelled is so white facing and it really just neglects a lot of the intersections that happen within the wider discourse It was just really lovely to read about what you were doing and how. I was actually thinking in terms of students’ access and how valuable that could be in their studies. Yeah, absolutely. It’s almost a full circle because, as I said previously, my education started in London surrounding black disability issues so thank you. Interview by Rayvenn Shaleigha D’Clark.


I AM STAFF, NOT A STUDENT: STAFF EXPERIENCE. Scenario: A TW graduate has gained a 0.6 contractual role at the university on a course via the Academic Development Fund. The Academic Development Fund was used to recruit new academic posts and evidencebased developmental initiatives that bring together a range of colleagues across UAL. As part of the TW programme, the TW academic receives additional support as they declared that they were was neurodiverse. The TW academic on their induction day with their new course team and line manager shared they would need additional support as part of them being an Associate lecturer and making things more accessible. After going through the disability staff route the TW AL was told they would need a laptop with computer-aided software and this was to be organised by their line manager. The line manager was informed that they would need to order the laptop and use their course budget code to finish the process.

“After going through the disability staff route the TW AL was told they would need a laptop with computer-aided software... After 4 months the TW associate lecturer tried to find out what was happening with them receiving the laptop.”

After 4 months the TW associate lecturer tried to find out what was happening with them receiving the laptop. The line manager informed the TW associate lecturer that they were unable to order the laptop and this would have to be done by the disability teams. The TW associate lecturer went back to disability services to be told the same that their line manager was the individual who could order it. The TW academic went back and tried to explain and again was delayed in receiving her laptop.

“The TW academic was extremely frustrated as they were unable to receive the support they really needed... ” The TW academic was extremely frustrated as they were unable to receive the support they really needed and decided to go and buy their own personal laptop. A few months later the TW academic wrote a complaint and a week later the laptop was ordered by their line manager and arrived promptly.

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IN·VIS·I·BLE DIS·A·BIL·I·TY.

ANONYMOUS, SHE/ HER, UK.

/inˈvizəb(ə)l/ /disəˈbilədē/. A poem for my Aunt In visualising (your) mental restlessness, the challenges of your invisible disabilities I reflect upon our relationship as my Auntie Aunt Gwenyth ‘Gwen’ Schizophrenia, OCD, Manic Depressive All these labels that society attributes to you To me you are more than the sum of these Moving parts We spoke once, Only once about how you often ‘don’t feel well’ And how no-one understands Not wanting to talk about it, Because you ‘didn’t want to talk’ I know the signs. You feel the signs Of Relapse. Of wanting to run away Because you said you were scared The Stress Of life-long Medication Daily Injections 220 // DISABLED PEOPLE: THE VOICE OF MANY.

alongside The yearning for home For family For wanting to be ‘well’ normal Sick, Strange, Unwell, Abnormal Not a part of this world You once revealed to me Of simply wanting to fit in This illness of ‘mine’ As you sigh and laugh. The white walls of Maudsley encapsulate the mental health system Strict Visiting hours Daily Eating Schedules Silent Hallways Endless Muted Now You say you’re back with us We speak a little more We promise to be Open Truthful Honest Because ultimately In this movement towards flexibility, We open the doors of communication and understanding.


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“INVISIBLE DISABILITY, OR HIDDEN DISABILITY, IS AN UMBRELLA TERM THAT CAPTURES A WHOLE SPECTRUM OF HIDDEN DISABILITIES OR CHALLENGES THAT ARE PRIMARILY NEUROLOGICAL IN NATURE. INVISIBLE DISABILITIES ARE DISABILITIES THAT ARE NOT IMMEDIATELY APPARENT, YET CAN LIMIT OR CHALLENGE A PERSON’S MOVEMENTS, SENSES, OR ACTIVITIES.” - Disabled World.

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List of SOME Invisible Disabilities • ADHD

• Interstitial cystitis

• Anxiety disorders

• Irritable Bowel Syndrome

• Allergies

• Lactose Intolerance

• Arachnoiditis

• Lupus

• Asperger Syndrome

• Lyme Disease

• Asthma

• Major depression

• Autism

• Metabolic syndrome

• Bipolar disorder

• Migraines

• Brain injuries

• Multiple Sclerosis

• Charcot-Marie-Tooth disease

• Multiple Chemical Sensitivity

• Chronic fatigue syndrome

• Myasthenia Gravis

• Chronic pain

• Narcolepsy

• Circadian rhythm sleep disorders

• Personality disorders

• Coeliac Disease

• Primary immunodeficiency

• Crohn’s disease

• Psychiatric disabilities

• Depression

• Reflex Sympathetic Dystrophy

• Diabetes

• Repetitive stress injuries

• Ehlers Danlos Syndrome

• Rheumatoid arthritis

• Endometreosis

• Schnitzler’s Syndrome

• Epilepsy

• Schizophrenia

• Fetal Alcohol Spectrum Disorder (FASD)

• Scleroderma

• Fibromyalgia

• Sjögren’s Syndrome

• Food allergies

• Trigeminal Neuralgia

• Fructose malabsorption

• Spinal Disorders

• Hereditary Fructose Intolerance

• Temporomandibular joint disorder

• Hyperhidrosis

• Transverse Myelitis

• Hypoglycemia

• Ulcerative Colitis

• Inflammatory bowel disease

To read more about invisible disabilities, visit: www.disabled-world.com/disability/types/invisible/ DISABLED PEOPLE: THE VOICE OF MANY. // 223


(DIS)ABILITY (WITH)IN INTERSECTIONAL THEORY & PRAXIS.

RAYVENN SHALEIGHA D’CLARK, CHELSEA COLLEGE OF ARTS, UK.

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Rayvenn Shaleigha D’Clark is a Digital Artist, Writer & Curator whose practice centres the reframing of black anatomy, exploring the hybridity of sculpture following the affirmation of media and the nuances of identity that pivot between hyper-visibility and invisibility, embedded in the everyday, collective experience. Her work and writing explored the theory of the ‘Body Politic’ which she uses as a catalyst to provide further visual context to the often collective perspective and self-referential questioning of black people and communities. D’Clark challenges and renegotiates the longstanding colonial gaze, dual eroticism and censorship placed upon black womxn’s bodies. Website - rayvenn-dclark.com 224 // DISABLED PEOPLE: THE VOICE OF MANY.

A discussion of Neurological Pluralism: Invisible Disability and the challenges around Intersectional Neurodiversity: *Please note that this article focuses on autism as an example of neurodivergent conditions due ONLY to the wealth of research that has been done in this area* We define the body outside the mainstream fantasy of a ‘normal’ body. We characteri[s]e the body and the mind as diverse; hence, our use of the phrases bodily diversity and neurodiversity - Invisible Disability Project Neurodiversity means many different things to different people. But what are the other images of neurodiversity?


It is estimated that around 10 per cent of the general population is neurodivergent in some way. A portmanteau of ‘neurological’ and ‘diversity’ that originated in the late 1990s, the neurodivergent paradigm asserts that neurological differences should be both recognised and respected as a social category on par with gender, ethnicity, sexual orientation, or disability status. Whilst the term ‘neurodiversity’ is beginning to enter the public lexicon as an umbrella term that defines individuals with a wide range of ‘hidden’ impairments (though the person may have challenges across areas) which include those related to the physical body (bodily), mental health, developmental (incl. learning difficulties) or neurological conditions including but not limited to autism, ADHD, dyslexia, dyspraxia, bipolar, OCD - that limits a person’s movements, senses, or activities of an individual on an everyday basis. In this respect, neurodiversity characterises such conditions as normal variations in the human genome. Initially embraced by individuals on the autism spectrum, the neurodiversity paradigm (though its inclusivity remains highly contested) moves away from the more ‘medieval’ explanations for a number of conditions; for example, Leo Kanner’s outdated ‘refrigerator mother theory’ (1950) an explanation for children diagnosed with autism or schizophrenia. Although now the concept of neurodiversity is being discussed much more in the public domain, it was journalist Harvey Blume who as early as 1997 (June 30, New York Times) explored the concept of neurological pluralism, foretelling the importance of the Internet in fostering the international neurodiversity movement. But to what degree is this movement intersectional? ‘The neurodiversity movement is culturally biased at best, racist at worst’, argues Twilah Hiari (as a self-defined ‘recovering patient’) in her Mad in America Article ‘Neurodiversity is Dead. Now What?’ (2018).

Whilst the neurodiversity movement declares its promotion of the self-advocacy and communal support of its members through activities such as inclusion-focused services, accommodations, communication and assistive technologies, occupational training, and independent living support, she notes significant racial, ethnic, and gender disparities within the movement, highlighting specifically differences in the identification of autism in children - more simply, Hiari alludes to the much larger number of diagnosis of intellectual disability (autism) in children born-of women of color, as well as describes an ecology in which she personally has been attacked by white neurodiversity proponents for suggesting that her experiences of autism vary in severity - hence defining an ‘abusive dynamics of autistic ‘groupthink’ within the neurodiversity movement. Similarly, Maxx Crow in Anarchism: in the Conversations of Neurodiversity (2017) as a young white autistic mentally ill trans person (self-defined) meditates upon the fact that autistic people of color ‘face more disparities in treatment [...] due to systematic racism and how it results in people of colour having less access to healthcare. Consequently, this also results in later diagnosis or self-diagnosis when being a person of colour’ (ibid.) Concurrently, it’s well documented that students of color are overrepresented in special education (Ben-Moshe & Magaña, 2014) and that white children tend to receive autism diagnoses earlier than children of color (Mandell et al., 2009). In Twilah’s research surrounding how Western medicine contributes to misdiagnosis, and the biases’ of clinicians regarding issues of gender, race, class, education, religion and disability which promote a culture that dismisses the credibility of the patient’s perspective, the difference – or influence of several intersections – is one of the biggest condemnations from the opponents to the neurodiversity movement; that racial and sexual orientation differences all simultaneously influence (thus DISABLED PEOPLE: THE VOICE OF MANY. // 225


complicate) the already complex system of neurodiversity, and that this is not accounted for within the larger international movement. Here, the growing concern for the need consider neurodiversity through the lense of gender-differences also becomes of principle concern as depictions of women’s bodies, minds and mobility continue to be policed; disability writer Dr Frances Ryan in her 2018 Guardian article discusses ‘how disabled women are rarely featured in the media. Even in campaigns or content that are purposely striving to include marginalised women routinely miss out those with disabilities. What if disability is the ‘last frontier of inequality’’, contemplates Ryan as hidden disabilities for the female neurodivergent Populus is something that needs to be elevated within the mainstream. There is undoubtedly so much to talk about when we’re talking intersectional neurodiversity. Essentially, the bridging of intersectionality and neurodiversity both in theory + praxis, Lauren Rose Strand in Charting Relations between Intersectionality Theory and the Neurodiversity Paradigm for Disabilities Studies Quarterly, Vol 37, No 2 (2017) makes a compelling case for advocating why the neurodiversity movement has a lot of work to do to include marginalised members of the community which continues to be dominated by white, Autistic perspectives - now only nominally beginning to address the ways in which neurodivergence intersects with other dimensions of difference, like race, gender, sexuality, and class. These differences make a difference. It feels that both Crenshaw’s (1989) and Gust Yep’s explanation(s) of intersectionality, alongside Nick Walker’s articulation of neurodiversity are incredibly useful for anyone who knows very little about either discourse. Nirmala Erevelles and Andrea Minear (2010) argue that ‘intersectionality has been set up as the most appropriate analytical intervention expected to accomplish the task of mediating multiple differences’ (p. 129-130) as 226 // DISABLED PEOPLE: THE VOICE OF MANY.

‘contemporary articulations of intersectionality, foreground the interplay between individual(s) and group(s), allowing for micro, meso, and macro analyses to emerge’ (ibid.). So, because identities are always multiple and experienced in configuration with other identities, movements such as the neurodiversity movement must also be intersectional to account for all primary stakeholders. To this many can justify their hesitancy toward the movement through the numerous statistical illustrations that demonstrate the different realities of the intersectional lived experiences of neurodivergent people who inhabit multiple marginalised identities; such as Black African-American, Autistic mother, educator and autism/HIV and neurodiversity advocate Morénike Giwa Onaiwu - belonging to the Autistic Women and Non-Binary Network (AWN) - who contemplates ‘how do I know where blackness ends and neurodivergence begins?’ (2015). *Here also on AWN you can find their a forthcoming autism and race anthology helmed by Lydia Brown.* It becomes clear that whilst an important movement within its own right, it similarly needs to fall under the banner of ‘intersectional’ activism which is quickly and very publically forging itself as ‘the only viable pathway forward’ for activist behaviours, often seen in solidarity with self-advocates with physical disabilities, with people of colour fighting racism, and with LGBT folks battling homophobia, bullying, and violence’ (Steve Silberman) So what is a progressive society to do? In my opinion, I think neurodiversity is a huge paradigm shift in public discourse that is long overdue. So whilst the task of changing societal attitudes seems mammoth, ultimately it feels that it has to be society itself who needs to open the doors of communication and understanding.


“WE DEFINE THE BODY OUTSIDE THE MAINSTREAM FANTASY OF A ‘NORMAL’ BODY. WE CHARACTERI[S]E THE BODY AND THE MIND AS DIVERSE; HENCE, OUR USE OF THE PHRASES BODILY DIVERSITY AND NEURODIVERSITY” - Invisible Disability Project.

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Bibliography: Do-IT. (n.d.). Hidden Impairments/ Learning Difficulties/Neurodiversity - Do-IT Profiler. [online] Available at: doitprofiler.com/resources/employer/ neurodiversity/ [Accessed 10 May 2019]. Tan, K. (2018). What else could ‘neurodiversity’ look like?. [online] Disability Arts Online. Available at: disabilityarts. online/magazine/opinion/else-neurodiversitylook-like/ [Accessed 10 May 2019]. En.wikipedia.org. (n.d.). Neurodiversity. [online] Available at: en.wikipedia.org/wiki/ Neurodiversity [Accessed 10 May 2019]. Faragher, J. (2018). Why employers should be hiring with neurodiversity in mind. [online] People Management. Available at: www.peoplemanagement. co.uk/long-reads/articles/employers-hiringneurodiversity [Accessed 10 May 2019]. Holland, J. (2017). The hidden challenges of invisible disabilities. [online] BBC. com. Available at: www.bbc.com/capital/ story/20170605-the-hidden-challenges-ofinvisible-disabilities [Accessed 10 May 2019]. Invisible Disability Project. (n.d.). Invisible Disability Project | Disrupting the Silence. [online] Available at: www.invisibledisabilityproject. org [Accessed 10 May 2019]. Fabian, R. (2018). What is Invisible Illness? (+ How to Explain it to Others) - #1 Mental Health Blog - Talkspace. [online] #1 Mental Health Blog - Talkspace. Available at: www. talkspace.com/blog/what-is-invisible-illness-howto-explain-it-to-others/ [Accessed 10 May 2019]. En.wikipedia.org. (n.d.). Refrigerator Mother Theory. [online] Available at: en.wikipedia.org/wiki/Refrigerator_ mother_theory [Accessed 10 May 2019]. Hiari, T. (2018). Neurodiversity is Dead.

Now What? - Mad In America. [online] Mad In America. Available at: www. madinamerica.com/2018/04/neurodiversitydead-now-what/ [Accessed 10 May 2019]. Robison, J. (2018). What is Neurodiversity?. [online] Psychology Today. Available at: www.psychologytoday.com/gb/blog/ my-life-aspergers/201310/what-isneurodiversity [Accessed 10 May 2019]. Nerenberg, J. (2016). Does Neurodiversity Have a Future?. [online] Greater Good. Available at: greatergood.berkeley.edu/ article/item/does_neurodiversity_have_a_ future [Accessed 10 May 2019]. Hughes, J. (2016). #intersectionalND. [online] Discourse Analysis and Disability Rights. Available at: jessmfhughes.com/2016/01/04/ intersectionalnd/ [Accessed 10 May 2019]. Crow, M. (2017). Anarchism: in the Conversations of Neurodiversity. [online] The Anarchist Library. Available at: theanarchistlibrary.org/library/maxxcrow-anarchism-in-the-conversations-ofneurodiversity [Accessed 10 May 2019]. Ben-Moshe, L & Magaña, (2014) S ‘An Introduction to Race, Gender, and Disability: Intersectionality, Disability Studies, and Families of Color. Women, Gender, and Families of Color. Fall 2014, Vol. 2, No. 2 pp. 105–114. Board of Trustees of the University of Illinois. Available from: www. academia.edu/9727582/An_Introduction_ to_Race_Gender_and_Disability_ Intersectionality_Disability_Studies_and_ Families_of_Color [Accessed 10 May 2019] Mandell, David S et al. (2008) “Racial/Ethnic Disparities in the Identification of children with Autism Spectrum Disorders.” American journal of public health vol. 99,3: 493-8. Available from: www.ncbi.nlm.nih.gov/pmc/ articles/PMC2661453/ [Accessed 10 May 2019] DISABLED PEOPLE: THE VOICE OF MANY. // 229


ANTARCTICA.

SYRUS MARCUS WARE, YORK UNIVERSITY, US. 230 // DISABLED PEOPLE: THE VOICE OF MANY.

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Syrus Marcus Ware is a Vanier Scholar, a visual artist, community activist, researcher, youth-advocate and educator. As a visual artist, Syrus works within the mediums of painting, installation and performance to challenge systemic oppression. Syrus’ work explores the spaces between and around identities; acting as provocations to our understandings of gender, sexuality and race. Website - syrusmarcusware.com/about/

Scene: 2025, Antarctica. BIPOC disabled folks have been sent to colonize the “wide white continent”. They have limited resources, little contact with home and a huge job ahead of them. And some of them are anti-colonial activists- sent to do the job of the colonizers. Sabian, a trans woman, is trying to convince her two loves Marcus and Jessica to join her n an escape plan- to go to the south of the continent and to set up a free space outside of the colonies. In this scene, Marcus tries to convince Jessica to come with them, and we find out a bit more about Jessica and Sabian’s relationship. Scene 4 MARCUS: Jess? JESSICA: Marcus! What are you doing here? Do borders mean nothing to you people? and its jessica. MARCUS: Ha! Ive been spending too much time with Sabian. I guess they dont anymore. JESSICA: So why are you here? What are you protesting now? MARCUS: Naw. Im not one for protesting. Do you know what I was doing before I was deployed here? absolutely nothing. I mean nothing of importance. My life was just getting and securing food and water and not much else. Day in day out. When the company offered me a free trip to this icy paradise of course I went for it.

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Not that I had much of a choice. (laughing). I could care less about the company, and I certainly dont want to waste my time protesting it. I just wanna have what I need and be safe. safer? You know what I mean. JESSICA: Why did you come here? MARCUS: Jess- JESSICA- I came because I guess I wanted to convince you to come with us. JESSICA: Marcus! MARCUS: I wanted to convince you to come with us, because.... well we need you. I think Sabian and I will kill each other if we are left alone to our devices! (laughing) 232 // DISABLED PEOPLE: THE VOICE OF MANY.

No, but really Jess-...ica. Come with us. It’s not gonna be safe here in the long run. Either were gonna be successful and set up the colonies and the rich folks are gonna come and turf us or we fail and we die here, alone, after our governments crumble. Think about it- the crumbling... its already happening. When was your last dispatch from home? Theyre off schedule right? (laughs) Mine are too. JESSICA: Marcus. I’m staying. Let me finish my work, I’ve got my log still to do. MARCUS: You’re still doing your daily logs? Man you are a company hero.


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JESSICA: I’m doing what I was assigned to do. It’s called working and I’m lucky to have a job to do in this world- in case you hadn’t noticed- its on fire and we are basically the last chance for humanity! Our governments have trusted us with this duty. I’m serving the best way I know how. MARCUS: Jessica! You can’t be this right wing! Not after what the governments have done to us all. How they’ve fucked us globally with this climate change. How they waited until the last moment then sent us here when it’s probably already too late...

JESSICA: I’m not right wing! I just believe in some things that you don’t. Like in our homelands, in the people we have elected to run those homelands. In the will of the constituents. All of our citizens who are praying for us to be successful so that they will have a place to come to. If you can’t see that as being important, we have nothing left to discuss. MARCUS: What about Sabian? JESSICA: Not important Marcus. We have nothing left to discuss.... MARCUS: Why couldn’t they have waited until this place had thoroughly thawed out?

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JESSICA: We had to come here now... every fucking one said it was time. The Antarctic plan had to begin. We had to come now. Don’t you remember your training? MARCUS: The fucking training! It was a joke. 54 weeks in the arctic where the temperatures were 20C and nothing like here. Learning skills I’ll never need and missing the ones that would keep me alive here. Afucking joke! I just did what I had to. I wanted to come here- I needed a secure place and somewhere to actually put down roots. I was glad to come here. It wasn’t any patriotic shit. JESSICA: Patriotism? I’m not talking about patriotism, I’m talking about knowing where your next meal is coming from and staying true to that source. You know, there was antarctic tourism? Rich tourists by the boatloads. Can you believe people wasting their money on this crap while world was on fire?? My government vowed to put a stop to it, by patrolling the waters more, by denying permits.... I voted for them and I believe in what they are trying to do. MARCUS: Come with us Jess. Sabian would- (Jessica cuts him off)

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JESSICA: Marcus! I’m so tired of this conversation. (She slumps mockingly). MARCUS: You know they protested? Me coming here I mean. The ablist assholes in my home country didnt trust their lives, no their livelihoods with a disabled person. Didn’t think I was up to the rigour of the job. JESSICA: Fuck! Marcus. MARCUS: No, Jessica, I want you to realize, people are assholes sometimes! You are so willing to do anything for your country but would they do the same for you? There’s few real people out there, people who get justice and self determination and the need for all of us to get to make it, not just the rich few. Shit. I do sound like Sabian. And speaking of Sabian- She’s one of the few people who really gets it, I mean(gets cut off) JESSICA: Marcus! Enough already. It’s time to go. And just so you know- they weren’t exactly thrilled it was me (gestures to skin)- coming here either. But I’m who they have and I’m here to do my duty. I’ve got work to do. Goodbye marcus! Marcus hesitates, then puts his hands up. Then leaves. Jessica starts back on her log.


JESSICA: “I remember when I had my first meeting with the company. At my meeting, they told me to avoid eastern Antarctica, it was so much colder than the west due to its elevation. They told me that a one room portable was being airlifted from my home to there for my efforts. They told me to get settled in and begin to set up a life there- living and establishing roots were one of the ways of ensuring the land claim. I was warned that the other eleven countries were also sending delegates, and that they would do everything they could to stake claim, to try to push the boundaries of the treaty, and to watch out for tricks or pitfalls. Of course, I was nervous. New people, new places, leaving everything behind. But I beleive in the company. And honestly? I couldn’t imagine more loneliness , more than my current life, and I was ready for something more to happen beyond trips to the rations station and the pressures of a life of isolation.I was going to have a fucking purpose.” “They are nuts. They will never survive. its a fools mission. what will happen to their camps? what will happen to their territories? Its gonna be a massive land grab by someone. when its discovered that they are gone that is. That could take months. (Jessica clutches her belly.) JESSICA: Months.... Okay. We reached the antarctic waters on November 20 2025....

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IN CONVERSATION WITH ELORA KADIR.

SHURA DAVEY AND ELORA KADIR, CENTRAL SAINT MARTINS, UK.

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An extract from a discussion between Shura Davey and Elora Kadir about Elora’s time at CSM, the barriers she faced as a disabled student and the perils of making a critical piece of artwork for her degree show and the institution’s response to it: Facillities E: There were some situations that started off my thinking about the way the building appears to myself and to other people - how it opens and works. I thought a lot about the help I was or was not receiving from the institution and used that as a starting point for a lot of pieces. With starting to make ‘How 236 // DISABLED PEOPLE: THE VOICE OF MANY.

Quickly Would CSM Descend Into Chaos?’ I was in a few situations where the Facilities Assistants had helped me out with access issues when they didn’t need to and those are some of my better memories of CSM being a friendly and supportive environment. Something like that can totally change your day! S: Is that what started your deepened friendship with facilities staff? E: Yeah and then I had to change the routes I was using to move around the building because of a few lifts that were out of service. I started entering the building from a staff only entrance to reduce any excess walking…


S: The rear entrance – or the loading bay? E: Yeah, the security corridor or loading bay. Then I’d just start asking random questions occasionally as I was working with chairs at the time so I’d always be on the lookout for anything around the building that looked a bit lost or abandoned and the Facilities Assistants were the best people to ask because they had such an in-depth knowledge of the building. I really appreciate that kind of thing. It also meant that I could be nosey and ask other questions about why it was taking so long for the lifts to get fixed and when you know these things, you can’t really be frustrated about it because at least I felt like I knew what was going on and not being kept in the dark. I used to really like sitting in the canteen to people watch and I started noticing them around the building, seeing what they were up to and realising that they do a lot and no one seems to notice that. I had a very specific experience of the building as a disabled student and I’d been exploring that in my practice, but I wanted to take it out of my own experience and I wondered what they think about the building… How they experience it day to day? What do they think about all this art and stuff? When they walk through the studios, what do they think about what they are seeing? So yeah, I wanted to talk to them [facilities] about what they do as well and I also liked the look of the loading bay and the security control room. I like all those more serious areas where the operational work is going on. In my previous photographs, these are the kind of spaces that I am interested in anyway and I like being where the action is, I guess? I’d also been watching some documentaries at the time by Andrey Paouonov and ‘Being Blacker’ by Molly Dineen was on iPlayer. I’d been reading books like ‘Brit(ish)’ by Afua Hirsch and ‘The Good Immigrant’, which

furthered my thinking around institutions and how they are structured. A lot of the Facilities Assistants reminded me of people that I knew and they were much more open to talking honestly than my fellow students. S: So on your last day, I came to help you clear out your stuff, contrary to previous suggestions that you weren’t angry enough at the institution, some of your cohort told you ‘you are so angry -you shouldn’t be so angry’ E: Well yeah, there was my obvious disappointment with the degree show space I’d been allocated, and it unfortunately confirmed ALL my thinking about institutional bias, and I felt like it was happening to me… I was aware of these things, but I thought this couldn’t be happening to me, could it? I strongly felt that I’d made something really interesting, but the institution didn’t seem to care and had put the work that I had made, and wanted to effectively ‘gift’ to the building, under a staircase at the back of the show where no one noticed it. I strongly felt that I’d made something really interesting, but the institution didn’t seem to care. Tutors curating the show had put the work, that I had made and I effectively saw as a ‘gift’ to the building and Facilities department, under a staircase at the back of the show where no one noticed it. I remember looking through the sets of images by two different degree show photographers and I couldn’t find one photograph of my piece... I had worked so hard to make the video in a short amount of time and it was about Central Saint Martins! I think it was quite an ambitious thing to take on and I hadn’t worked with groups of people before and I was very conscious of that. I didn’t want to be that annoying person that suddenly appears and says ‘ so hey guys do you want to be in my video?’ [laughs] and then creates something awful. S: But you’d already built up relationships with these people because of the interactions you had. DISABLED PEOPLE: THE VOICE OF MANY. // 237


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E: Only to a few of the FAs. Not everyone. As I was walking past them every day and asking questions about abandoned bits of furniture [for a previous piece], I thought it would be really interesting to get them involved in some way… I didn’t know but how maybe it could be really simple, maybe I could just get them to write their names, every time I walk past the security corridor, everyone who’s in the control room just writes their names on a sheet of paper, like my own weird sign-in sheet, because they have one on their desk… but then I realised that I don’t even know all the FAs so a video where I speak to everyone who wants to speak to me seemed like the most natural first step. I recorded those chats and made some kind of ‘weird’ video. [laughs] Weird in a good way! S: Well I don’t think its ‘weird’, I think its really, potent, you know as I told you, I’ve worked in a similar environment to the facilities staff, and erm one of the things I thought when you were talking about it 238 // DISABLED PEOPLE: THE VOICE OF MANY.

before, it’s that you see these people, they are there all the time, and nobody else is engaging with them and I guess part of that was reflecting some of the experiences that you had been experiencing the whole time? E: Perhaps, and I also really appreciate, when somebody helps you, and they are the hard work of the building. There were occasions where they didn’t need to help me out with specific access issues and that is the kind of thing that I really appreciate. Or when people go out of their way to help or ask you if you need help with something, and I found that nobody was really doing that at all apart from them. And then I was noticing the way they were helping loads of people, around the building. S: They didn’t even make it just about you, they help everyone, it just happened that at that time, on that day you were the person who needed that help… and then


“ON THE ONE HAND, PEOPLE TELL YOU TO CALM DOWN. ON THE OTHER, I’VE HAD PEOPLE TELL ME THAT I AM NOT MAKING ENOUGH OF A FUSS, WHICH IS OK FOR SOMEONE TO SAY BECAUSE THEY ARE NOT REALLY AFFECTED, BUT I’M SICK OF CONSTANTLY FIGHTING THE INSTITUTION ALL THE TIME.” - Elora Kadir.

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it changed your perspective on who was doing the helping in the building maybe? E: Yes, definitely! Back to the degree show space… I was upset and angry not just for myself but also for the FAs who had taken part. They do A LOT more than just act as “security” for the building [which is what the majority of staff and students think] and a better space would have given it more of a chance to reach people. Some of my fellow students would agree with me on this and others would effectively tell me to get over it or let it go or calm down. My ‘favourite’ time was when I was saying how ridiculous it all is and a fellow student just looked at me like she couldn’t comprehend that I could possibly be saying this about [what she clearly considered to be] the ‘good’ institution. On the one hand, people tell you to calm down. On the other hand, I’ve had people tell me that I am not making enough of 240 // DISABLED PEOPLE: THE VOICE OF MANY.

a fuss, which is ok for someone to say because they are not really affected, but I’m sick of constantly fighting the institution all the time. That is what I always need to do… I always need to be calling people up on things that they haven’t done and it’s alright for you to say ok, you need to go and… make a fuss about that... get angry about it… tell them that it’s wrong… I’m already making a big fuss; if you knew the hours I’ve spent making a fuss you wouldn’t really be saying that. And if people are going to be looking at me the way the person on my course did, then there is no way I’m letting you know how annoyed I am. Universities are still putting significant barriers before disabled students and failing to provide them with the support they need on campus, according to new research carried out by young campaigners. www.disabilitynewsservice.com/universitiesstill-failing-disabled-students/


DEAF VOICES. â&#x20AC;&#x2039;CHELLE DESTEFANO.

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â&#x20AC;&#x2039; helle Destefano, a Deaf artist, born in C 1979 and currently lives in Melbourne, Victoria. She works with watercolour, ink, acrylic, gouache and mixed media to communicate her stories on past lives and living in the now. She is beginning to work in other artforms that include sculpture, art installations and performance art to compliment her visual art works.

Some of her works are compelling, particularly the works that go deep into the stories she shares about her Deaf culture, life of a Deaf person, experiences, stories about moments in life and perspectives of history. She communicates through spatial movements in her work that draw the viewers in to view, ponder and discuss, such as her Auslan Movements sculptural project she is working on at the moment.

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Raising our Deaf voices louder to stand up against audism that we have been experiencing for many many years, centuries even. Now is the time to start to really speak up and say enough is enough and to demand equal access and equality in every sense in the communities. This work relates to my research on growing up Deaf and Deaf culture, and has led me towards more research and work on cultural appropriation of our language and Deaf culture.

never get to hear words clearly but only hear sounds, sometimes learning to recognise where sounds come from or what they are. My video poetry performance on audism is a strong message regarding audism not being acceptable and how we are now raising our Deaf voices louder. To view the video, visit: https://vimeo.com/419566202

Images - the paper sculptures were created from spatial movements of sign language when I was signing stories of being Deaf, and holding paper as I signed each word. These sculptures were a finalist in 4 art awards the past year including the Banyule Art Award for Works on Paper, the Lyn McCrea Memorial Drawing Prize, the Noel Counihan Commemorative Art Award, and the Australia Post Art Award. Another artwork relating to growing up Deaf is one of me sitting as a child trying to listen to and speak to a toy box dog that talked back copying my voice. This event was in 1984 when I was 5 and I painted the artwork in January 2020, this year. One of the artworks about I will Never Hear Words Ever, punctuates a point about the audism issue, that people assume we can hear perfectly with hearing aids on, but thatâ&#x20AC;&#x2122;s not so, and it goes to say that when we wear hearing aids or the cochlear implant after the age of 5, we donâ&#x20AC;&#x2122;t have an auditory memory that was ever developed before age 5, so we DISABLED PEOPLE: THE VOICE OF MANY. // 243


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IN CONVERSATION WITH SKY CUBACUB.

SHADES OF NOIR, UK.

Shades of Noir spoke to Sky Cubacub, a non-binary queer and disabled Filipinx designer and founder of Rebirth Garments, which creatives gender-affirming garments for queer disabled people, about radical visibility, accessibility and the intersections of queerness and disability. We would like to to thank Sky for taking the time to speak with us. Please can you tell your origin story? How did Rebirth Garments come about? I started Rebirth Garments in 2014. I had been dreaming about a collection like this since I was in high school when I really wanted to have gender affirming undergarments, whilst I was figuring out my identity it wasn’t accessible to me being under 18 without a credit card. I wanted to make gender affirming clothes more accessible to different folks in different circumstances, so I do sliding scales for folks in need for example. I also wanted to make clothing for folks with disabilities, so when I was thinking about starting the clothing line I was thinking about doing them as separate ideas, one clothing line for queer people, one clothing line for disabled people. But then I figured that other people probably had intersectional identities like me, so I chose to create a line for people in that intersection. Do you have influences in designing the garments and the performance in the runways? I interview all my models and that gives me all the inspiration for what types of garments that I want to see in the world. More generally, I’m inspired by American architect Buckminster Fuller - renowned 20th century inventor and visionary dedicating his life to

making the world work for all of humanity, Fuller operated as a practical philosopher who demonstrated his ideas as inventions that he called ‘artifacts’ - and ‘Club Kid’ Leigh Bowery - also known as ‘Dada Kids’, they created a hedonistic community for the gay, transgender and disenfranchised to be authentically celebrated, fuelling pioneering party scene. My dance runways aren’t choreographed, they are improvised. I give the models a prompt, I give them 30 seconds or a minute just to do whatever they want and they go wild with it. The chain-maille [the interlocking chainmail that Sky creates as headpieces] was my first main medium; it was more about getting obsessed with the process itself, it’s a really nice repetitive meditative process, I would make a lot of one weave and play with it, draping it on myself or on a mannequin. What does radical visibility mean to you? Is it possible to have control over visibility? I don’t think people always have control over visibility which is why I’m interested in it and it’s not always safe for people to be radically visible. I would really like to promote people in places they do feel safe to be radically visible. Does your Filipinx identity also play into ideas around radical visibility? Yes. I was very ashamed of being Filipino when I was a kid, and I felt very alienated by my Filipino family because I was different and an artist and queer. But then, creating this visibility around being Filipino has been very important. I’ve been connected to a lot of Filipinx people, South Asian people in general who have voiced the same thing. South Asian folks in general have very little visibility, and black and brown folks too, so DISABLED PEOPLE: THE VOICE OF MANY. // 245


I have shows that are only Filipinx people or only black and brown people. I’ve also made things that are affirming to folks of different religions, for example more modest clothes for muslim folks or my Hasidic cousin. I like skimpy and naked things, but as long as an outfit feels good to you it doesn’t have to be skimpy to be sexy. Is finding and creating those spaces important to you in your work? I’m always trying to create those spaces, always trying to make a space where people’s access needs are being met. Sometimes places will be like, ‘oh this is accessible or we can work on your access needs’, but when you try to ask them for access needs they will huff and puff. That’s a very hostile way of creating accessibility. I try to not promote spaces that do that. It also means respecting people’s pronouns or the names that they want to be called by, not being racist or sexist. It means actively celebrating everybody. There’s a lot of problems with accessibility in the queer scene in Chicago - people have house shows which are not accessible, and developers don’t make housing accessible, and they get around it by saying the buildings are historical. I don’t really feel like the queer community on the whole is very concerned with accessibility, but things like ‘Dyke March’ are really concerned about accessibility, in contrast with something like ‘Pride Parade’ for example. There are some clubs that are accessible that I go to pretty often, but there are also clubs that could be but chose to not let people use elevators. I only do shows in accessible places. 246 // DISABLED PEOPLE: THE VOICE OF MANY.

What difference does it make to the people who have tried your garments? Almost everybody who has worn my things have commented that it’s so much more comfortable, I didn’t know I could not be in pain from my clothes. When I first started out, a lot of folks said they never thought anyone would care about how they felt in their clothes. People like that I have so many clothes options. Someone told me recently that I knew how to dress them well, but I just look at pictures of my models on Facebook, look at how they dress, and create a radical visibility version of that. One of my models recently bought all the clothes that they modelled, telling me they had never had clothing like that. Have the narratives around queerness and disability shifted since you started working in this field? Yes definitely. When I first started, I would tell people, I’m starting this clothing line for the intersection between queerness and disability, but people would just get really angry at me, tell me that queerness isn’t a disability. I wasn’t saying that, but they couldn’t even hear it. A lot of them didn’t even know that disabled folk could have a sexuality, would get confused when I would tell them about queers with disability. They would think they didn’t exist. But it’s better now, there are people like [Black trans disabled model] Aaron Philip, there are a bunch more folks that are more visible. What advice would you give to your younger self? I love working but I don’t know that if I knew how much work it would be that I would have started the clothing line. But for my younger


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younger self, I guess I would tell them that teachers and other adults don’t actually know everything, you don’t have to follow what they say, it’s just their opinion. I would have arguments with teachers all the time, then I would feel guilty, but then I would know I was right, that they were being fatphobic or racist. But just because they are in a position of power, doesn’t mean they are allknowing. So yeah, be confident about that.

Bibliography: Cubacub, S. and Shy, D. (ed.) (2015) ‘A Queercrip Dress Reform Movement Manifesto’, Rebirth Garments, 22nd April. Available at: rebirthgarments.com/radicalvisibility-zine (accessed 19/06/2019).

You can check out Rebirth Garments here: rebirthgarments.com/ Follow Sky on their Instagram: www. instagram.com/rebirthgarments/ They are also fundraising for the gender affirming surgery and education of a trans teenager, which you can support here: www. gofundme.com/transgender-teen-in-crisis Interview by Florence Low.

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FINDING INTERSECTIONAL CREATIVES IS EASY. This database aims to bring together our growing community of creatives and acknowledge the expertise of global communities of visionary practitioners. The aim of this database is to support work in the following areas: • Decolonising creative curriculums • Acknowledging cultural currency. • Affirmation of diverse communities contribution to the creative sector. • By making this resource accessible we hope to challenge any assumptions which seek to suggest that marginalised communities have made no significant contribution to the creative sector.

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FEATURED CREATIVE: HAMJA AHSAN. Image 95 252 // DISABLED PEOPLE: THE VOICE OF MANY.


Shades of Noir, UK spoke to artist, activist and curator Hamja Ahsan, co-founder of DIY Cultures and author of Shy Radicals: the Antisystemic Politics of the Militant Introvert, on the occasion of him being awarded the Grand Prize at the Ljubljana Biennial, ‘Crack-Up - Crack Down’, about his award and the Biennale, the importance of the DIY scene and zines in decolonising and antiracism work, and his influences. We would like to to thank Hamja for taking the time to speak with us. Congratulations on winning the Grand Prize at the Ljubljana Biennial of Graphic Arts in June of this year! Can you tell me about your work? The curators Slavs and Tartars commissioned my piece due to their love of my recent book Shy Radicals: the Antisystemic Politics of the Militant Introvert. The piece is a referendum based on the fictional state of Aspergistan. People across the state can vote to separate into their own state of shy, autistic spectrum and introverted people. The ballot paper was modelled on the Brexit ballot paper. Slovenia was the first nation to separate from the communist federation of Yugoslavia, so had more context on independence movements. The vote is still going on across the city, and the result will be announced at the end of the Biennale on 29th September. The Slovenes appear to be so proud to be part of the EU, the flag is around the city - in fact, my initial plan was to replace the EU flag with the flag of Aspergistan. As part of the award, you get a solo exhibition in the next Biennale and a residency. The Biennale was one of the first meeting points for Black, African, Asian and Latin America artists.

We need to recover that history for British arts institutions. I have encouraged institutions like the Stuart Hall library to document this history of Slovenia in empowerment for the global south. Recent conferences like Axis of Solidarity at Tate Modern have been taking note of this. How do you describe the work that you do, how do you define yourself? Since winning the Grand Prize, I have been describing myself as an artist first, but I used to describe myself as a curator, and I was an activist first for about a decade. Winning the award, was like a phoenix from the ashes moment for my artist career. I had wanted to be an artist since I was three years old, but between graduation and now there have been lots of periods of depression, the standard post-graduate life. It can be really difficult for arts students. I wrote a book called Shy Radicals: the Antisystemic Politics of the Militant Introvert, which is about a revolutionary political party, like the Black Panthers but for shy people. I’ve been touring it around the world, to the Netherlands, Slovenia, Germany, New York, the invites keep coming. My dream is to be the commander-in-chief of the Shy Radicals movement. I used to edit and commission but now the book and its vocabulary seem to have inspired a dozen new artworks from the collective Academics Against Networking to new artists books and sculptures, by others in all various media. It’s become its own generative creative trail. I work in all formats, including performance, archiving, video. Concept-led stuff. I founded DIY Cultures, which is all about changing white domination in zine culture. It’s been transformed, it’s no longer a white hipster thing. I’m a campaigner for civil liberties, against the war on terror. I studied under Professor Anne Tallentire at Central Saint Martins who represented Ireland in the Venice Biennale, she was a very important person in my life. I went as DISABLED PEOPLE: THE VOICE OF MANY. // 253


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a mature student and she saw something exceptional in me, she really believed in me. She knows when to be kind and when to be critical. The 4D pathways in the BA Fine Art was a very conceptually pioneering system. What has influenced you in your work on DIY Cultures and Shy Radicals? As a student, I’ve been very influenced by Third Text journal founded by Rasheed Araeen, its terms for racial equality and a more inclusive culture. Conceptual art movements, prisoner writing. I’ve been involved in Free Talha campaign for eight years for my brother who was incarcerated, for which I was shortlisted for a Liberty Human Rights award. The way that prisoners think about the world and power and the state, prisoners under colonial powers in particular, had a deep influence on me, more than any academic theory. The Manic Street Preachers, their early work, the Holy Bible album, that’s how I got into zine culture at 13 years old. The subculture of fanzines of the 1990s around the Manic Street Preachers also resulted in a project by Jeremy Deller around the time he won the Turner Prize. That got me into socialist politics, inclusion, at an early age. I come from a Bengali background and am inspired by Bengali avant-garde films, like Satyajit Ray, Aparna Sen, Ritwik Ghatak for example. Living in London inspires me, the hybridities of so many different lives, different worlds, different ways of being. What is the importance of DIY and zine culture to you? Contemporary life, in general, is bureaucratic, there is too much administration in every part of our lives. I never predicted that zine culture would be as big as it is now. I was into it before the internet, in the 90s. But it’s had a huge upsurge, like vinyl; people have digital fatigue. The Internet hasn’t killed zine culture, people are looking for slowness, authenticity, company.

Alternative ways of achieving racial equality that aren’t what art theorist Saharat Maharaj called ‘multicultural managerialism’. There’s an opportunity for connection, it’s more spontaneous, there’s less red tape. The art establishment for what is called ‘Black art’, it has become too obsessed with grant applications and big capital, it has lost its grassroots origins. Zine culture is more immediate. During my MA, all my tutors and guest tutors were white, so I was very encouraged to see the Decolonising the Curriculum zine; that student-led activity, I wish I had that. The artworld is very far from being an equally representative place, but a lot of academics are my heroes; Edward Said, Ella Shohat’s Unthinking Eurocentrism had an enormous impact on me. I wanted to be an academic or a scholar-activist, but now I feel academia has become too much in its own bubble. One of the workshops we do at DIY cultures is ‘Turn your PhD into a Zine’; we encourage people to bring along their thesis and think about how it could be reinvented via zine culture to communicate more outside of that bubble. The format of Shy Radicals is a performance piece of writing that I hope will shake up the dry plain prose of academia. Why do we assume that academic writing is the only way of conveying truths? The way a comedian speaks is a truth methodology. That’s why Shy Radicals is in so many different formats. Of all the works published by book works, Shy Radicals is the one that has the biggest following outside of it. Zines don’t entirely belong to the art world. The artworld is still exclusionary, but zines build bridges. Everything can become ossified, there are ways in which the market creates formulaic staleness - how many times can you see Owen Jones speak, for example?

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Have you seen these worlds change at all around representation of shy people, neurodivergent people, people of colour? What are your hopes for the future? I think things have improved a lot in ten years. But in terms of cultural institutions, the most diverse places in the world are prisons and the unemployment queue. We have Trump in power, and a resurgence of ugly forms of neofascism and we still live in a white supremacist world. DIY Cultures has an enormous impact on change and the makeup of creative cultures. We are remapping the world. we have connections and exchange to Tanzania, Uganda, Malaysia, they are coalitions of hope. The only problem is that it took up all my life. It really pushed me to my limit, it was a lot of sacrifice and work, but it might happen again in the future. We are thinking of making an anthology. In terms of neurodivergent inclusions there have been some really positive movements in the trade union movement with a branch within the revitalised Corbyn Labour party called Neurodivergent Labour led by aspie poet Janine Booth. In terms of arts, the dyspraxis performance artist Daniel Olivier at Queen Mary University has played a key role in bringing many neurodivergent artists together in an unofficial national network with programming many key events in Harold Pinter Theatre which I have been a part of. The Autism Arts festival at Kent University programmed by Shaun May has been a great Biennial model. The format of the festival allow space for stimming and a three colour badge system that allows the audience to be left alone, free from small talk. It’s amazing how the motions and regulations of these movements and events are so similar to the fiction laws I draft in my book Shy Radicals in envisioning the Shy Peoples’ Republic of Aspergistan. My hope for the future is the decolonial Introvert revolution, of course. I consider myself on a never ending world tour to overthrow white-supremacist, extrovert-supremacy. 256 // DISABLED PEOPLE: THE VOICE OF MANY.

I will stop touring Britain, Europe and the world, of course… once these systems are overthrown. What advice would you give your younger self, or to other artists? Cities like London and New York are excessively saturated. There your head feels like a traffic jam. That’s why I would encourage artists to come to more chilled cities like Rotterdam and Ljubljana. That encouragement is really important for your morale as an artist. I’m living in the Hague at the moment where there is a large Muslim presence; before I went to the Netherlands, I always thought that London was the centre of the world, that there was nothing like it, but the things that exist in London exist elsewhere. Somethings that are British are globalised, like Premiership football, so I get a sense of homeliness here. I meet a lot of British artists based abroad, because of austerity and cuts. In terms of state encouragement, other countries are far more generous in terms of what they offer, they recognise the financial importance of art as well as cultural importance. So I would encourage students to look elsewhere. London isn’t the centre of the world, I had that fallacy for a long time in my life. Hamja Ahsan book Shy Radicals: the Antisystemic Politics of the Militant Introvert (Bookworks 2017) can be purchased £9.95 here He can be found on instagram and twitter: @shyradicals @hamjaahsan The award-winning work The Aspergistan Referendum is in Ljubljana Biennial curated by Slavs and Tartars which runs until 29th September 2019, touring to Poland Warsaw in March and April 2020. Interview by Florence Low.


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OUR PARTNERS.

ACADEMIC AUDIO TRANSCRIPTION LTD. Shades of Noir (SoN) is proud to be partnered with Academic Audio Transcription Ltd (AAT) a specialist academic transcription services company with a social impact. Established in 2017 by disabled and chronically ill PhD candidate and ex-teacher Zara Bain, Academic Audio Transcription Ltd was established to provide flexible, accessible and fairly paid work for disabled, chronically ill and neurodivergent freelancers by connecting them with academic transcription and closed captioning work, whether for confidential research interviews or publicfacing materials including lectures, workshops, conferences and online videos. By offering these services and advocating for their use, AAT aims to increase uptake of these small but concrete measures toward improving accessibility in academic settings and beyond. Furthermore, by ringfencing profit from full-paying clients, AAT are able to support junior, underfunded and marginalized research and researchers by offering them discounts of up to 60% on AAT services. In addition to partnering with the team at Shades of Noir, AAT works with a range of UK and international clients, including institutions like Cambridge University, University of Edinburgh, Cardiff University, UCL, the National Science Foundation, Mount Allison University, organisations like The Honor Frost Foundation, the Journal of Popular Music Studies, and the Society for Women In Philosophy UK, and disabledperson led charities and scholar- activist projects like Transport for All UK, and the Contra* Podcast Solidarity Chats series on disability, eugenics and COVID-19. 258 // DISABLED PEOPLE: THE VOICE OF MANY.

Zara Bain is a UK-based writer, researcher, and former school and university teacher who is currently undertaking a PhD in Philosophy, specialising in issues at the intersection of moral and political philosophy, social epistemology, critical philosophy of race/racism/whiteness and disability. Her dissertation provides the first monographlength analysis of the concept of the ‘epistemology of ignorance’ in the work of Jamaican-American political philosopher, Charles W. Mills, with a specific focus on applying Mills’s work to the British context. In addition to her research and work around critical engagements with whiteness and white supremacy, Zara’s experiences as a disabled person with lifelong chronic illness, both outside but especially inside higher education, mean that a disability-oriented approach informs much of her work. In 20132015 she founded group blog PhDisabled, dedicated to capturing the experiences, reflections and expertise of those navigating academia while disabled and chronically ill, especially as postgraduate researchers and beyond. Most recently, she has been organising with other disabled PhD students to argue for a range of crucial reasonable adjustments for disabled, chronically ill and neurodivergent PhD students in light of the COVID-19 pandemic, with their open letter featured in The Guardian.


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In the future, Zara hopes to be able to return to teaching to resume her project of designing accessible, engaging teaching and learning materials for students of philosophy and anti- racist and decolonial projects, continuing the public work begun in her co-authored introductory book, Philosophy: A Crash Course—the very first popular introductory book in philosophy to include entries on ‘white supremacy’, ‘disability’ and ‘queer theory’. She also aims to write a number of scholarly books developing her PhD research, exploring oppressive forms of ignorance production in universities, the healthcare system, and a separate but related project drawing on her Anglo-Indian, Jewish and Italian heritage to examine the shifting terrain of whiteness and proximity to it.

Zara’s bibliography includes: • ‘The Message in the Microaggression: Epistemic Oppression at the Intersection of Disability and Race’ in Microaggressions and Philosophy (2020), edited by Jeanine Schroer and Lauren Freeman. Routledge. • ‘Is there such a thing as ‘White Ignorance’ in British education?’ in Critical Philosophy of Race and Education (2018), edited by Darren Chetty and Judith Suissa. Routledge. • Philosophy: A Crash Course: Become an Instant Expert (2019) co-authored with Nadia Mehdi and Adam Ferner. Ivy Press. • ‘Responding to Cognitive Injustice: Towards a ‘Southern’ Decolonial Epistemology’ (2017) in Global Justice: Theory Practice Rhetoric 9 (2) • ‘Accessing Philosophy: On Disability and Academic Philosophy’ (2016) [blog post on ‘Disability and Discrimination’] • ‘Event Organizers: Give Access Information Up Front Please?’ (2014) [blog post on PhDisabled]

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READING LIST: INTERSECTIONAL DISABILITY AND DISABLED WOMEN.

DR DIEUWERTJE DYI HUIJG.

Dr Dieuwertje Dyi Huijg Dyi Huijg will soon take up a Leverhulme Early Career Fellowship, at the University of Roehampton, with an intersectional project on ADHD women. As a creative analyst, researcher and activist, she has co-organised several workshops on race, whiteness, feminism, generational inequalities, disability, sexuality, and activities to empower women of all backgrounds living in the Netherlands and elsewhere. Her critical comments on race, identity and womenâ&#x20AC;&#x2122;s participation in western and non-western society are not always welcomed but they are necessary for the debate (courtesy of Astrid Runs, Lecturer at FHR School of Business in 2015). Compiled by Dieuwertje Dyi Huijg, Sisters of Frida & University of Manchester. Academic resources: 208 entries / Third sector, government and UN reports and papers: 25 entries You can download the reading list here via Sisters of Frida, here as a Word Doc or here as a PDF. My task was to find readings on disability to add to two modules on intersectionality. I am a disabled woman and research intersectionality, but my own work lacked a disability focus. It was difficult, though, to find intersectional texts that look at the junction of disability and gender, but also of race, sexuality, class and other social categories. The fields of feminist, race critical and intersectionality studies do not regularly address disability. In turn, disability studies are not convincingly intersectional either.

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I realised that an intersectional disability reading list would have to look beyond said fields, so I searched quite widely and, after completing the project, I was a bit obsessed and just continued. Still, the reading list is quite limited. Either way, I hoped that the reading list could help others; they can browse it, download it, or otherwise use it as they wish. Rather than expanding the list, I set up two reading groups to discuss texts with others. I run the Neurodiversity Reading Group London, which is specifically open to students and non-academic folk. Similarly, Dr Kelsie Acton and I organise the Disability & Feminism Reading Group. Both groups are interdisciplinary, international, and seek an intersectional approach. We meet online now and try to make the meetings welcoming to neurodivergent and disabled participants.


FURTHER RESOURCES.

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NOTABLE BLACK ACTIVISTS IN THE DISABILITY CANON.

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Disclaimer: Please note, this is a list of information that Shades of Noir has to date. It is important to state that we recognise that there is likely to be many more people who have been erased from herstory/theirstory/history who will have no doubt contributed significantly to both the discourses and or actions to ability/disability actions for equity - we salute you all!

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“2020 IS MY MILESTONE OF 50 YEARS OF BLACK DISABILITY ADVOCACY. WITHIN THIS ROLE MODELS MAKE A HUGE DIFFERENCE IN SETTING HIGH EXPECTATIONS FOR YOUTH WITH DISABILITIES. PEOPLE WITH DISABILITIES OF ALL BACKGROUNDS CAN BE AMONGST THE HIGHEST ACHIEVERS ON EARTH AND ARE SHINING A LIGHT ON INDIVIDUALS WITH DISABILITIES WHO ARE, OR HAVE SUCCEED IN THEIR CHOSEN CAREERS.” - National Black Disability Coalition.

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Past activist and campaigners: Nasa Begum

A qualified social worker, produced a number of publications and worked on the needs of Disabled refugees and asylum seekers. She co-wrote the book Reflections with Milliedrette Hill (Begum, N, Hill, M and Stevens, A, 1994).

Milliedrette Hill

A student barrister, freelance writer and an advocate on race and disability. She co-founded Black Disabled People Association and actively spoke out about the experience of Black Disabled People. She co-wrote the book Reflections with Nasa Begum and Andy Stevens (Begum, N, Hill, M and Stevens, A, 1994).

Menghi Mulchandani

The Chief Executive of Action Disability Kensington and Chelsea for 13 years. She was the first Disabled Person and Woman of Colour to be appointed to lead the organisation. So far she remains the first Disabled Women of Colour to have served as a Chair of the National Centre for Independent Living.

Mary Price

She was born in Barbados and was brought to London in the 1820s by her owners, the Woods. She was the first women to present anti-slavery petition to Parliament for Enslaved African People to gain freedom from slavery.

Barbara Stewart

A poet and community activist. She was also known for her work on disability hate crime.

Present activist and campaigners: Julie Jaye Charles

The founder and head of the Equalities National Council organisation advocating on Black Disabled Peopleâ&#x20AC;&#x2122;s issues. She has contributed to a number of publications on the issues affecting Black Disabled People in Britain.

Eleanor Lisney

A cofounder of Sisters of Frida, British Council Disability Advisory Panel and the web team of the International Network of Disabled Women. She has worked tirelessly with the organisers of the London Women of the World event to ensure Disabled Women have a presence on the panels.

Caroline Nelson

She has been the Chief Executive of Choice in Hackney for over 10 years. The organisation provides advocacy services for local Disabled People. She remains one of the few British Black Disabled Women to head a Disabled Peopleâ&#x20AC;&#x2122;s Organisation in London.

Saadia Neilson

In the 1990s moved from Morocco to live in England. She is an international trainer on disability issues and human rights. Saadia took part in a number of protests including the ITV Telethon. She worked closely with Milliedrette Hill and also campaigns on other intersectional issues affecting Disabled People.

Sarifa Patel

A community activist and campaigner. She runs the London Borough of Newham Disabled Reps Forum and campaigns against segregated education.

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Angela Smith

She actively campaigns on independent living issues and is a committee member of the Race Equality Foundation. She also contributed her story to Reflections book (Begum, N, Hill, M and Stevens, A, 1994).

Deborah Williams

She is a performer, writer, producer and director. She is known for her contribution in the implementation of the Disability Discrimination Act in the cultural sector.

UK & Beyond: Kamran Mallick

The Chief Executive of Disability Rights UK, the only UK wide disabled people’s organisation, as well as trustee of large, vibrant theatre the Lyric Hammersmith and small disability charity Wheels for Wellbeing.

Nabil Shaban

An actor and writer who co-founded Graeae, a professional theatre company for disabled performers. Graeae theatre company has built up a strong reputation for high quality, challenging work that has played to mixed audiences across the country. It has allowed Shaban and fellow members to write, produce and act in a variety of roles that would otherwise be closed to them.

Rev. Calvin Peterson

He was born with cerebral palsy in 1948 and is the founder of the organisation, Disabled in Action (DIA), that has worked on for over 40 years is the Black church who is committed to developing a new narrative for ‘change’ in the Black community until disability segregation is eradicated in these spaces.

Leroy F. Moore Jr

An African American writer, poet, community activist and feminist who was diagnosed with cerebral palsy founded Krip Hop Nation which focuses on Black disabled issues through music, language and global activism.

Alice Wong

Alice Wong who has spinal muscular atrophy is a research consultant and disability rights activist based in San Francisco. From 2013, for two years, Alice served as a member of the National Council on Disability, to which she was appointed by President Barack Obama. In 2014, on the 25th anniversary of the Americans with Disabilities Act of 1990, she founded the Disability Visibility Project which works to ‘create, share and amplify disability media and culture’ by collecting historical recordings of interviews with disabled people in the United States.

Emmanuel Ofosu Yeboah

A Paralympic athlete and activist from Ghana, West Africa, Emmanual was born in 1977 without a right shin bone, which resulted in a severely deformed leg. Spurred on by the death of his mother years later, Emmanual wanted to bring attention to the plight of disabled people. Along the way, he has spoken to disabled children and gives speeches to church-leaders and dignitaries.

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Claudia Gordon

The first Female Deaf African American Anti-Discrimination Advocate who is recognized as one of former President Barack Obama’s key advisors for disability issues. She was also the first female deaf African American lawyer to graduate law school and pursue a career devoted to helping individuals with disabilities. Today she works in a senior role at Sprint, a company with many accessibility features that enable people who are deaf to communicate.

Javed Abidi

Javed Abidi was born with spina bifida, Javed was an Indian activist who studied journalism and communication in Ohio. He was instrumental in drafting India’s The Persons with Disabilities Act 1995, ensuring that sometimes forgotten disabilities, such as autism and dyslexia, were included. From 1997 he worked as the director of the National Centre for Promotion of Employment for Disabled People (NCPEDP) in India. NCPEDP is a nonprofit organisation that aims to bring government, industry, international agencies and the voluntary sector together to empower disabled people.

Haben Girma

A deafblind lawyer who advocates for Disability Rights. She became the first Deafblind person to graduate from law school when she earned her degree from Harvard Law School in 2013. She is a civil rights attorney who advocates for disability rights, a public speaker who travels the country changing people’s perceptions of the disability community in the media and has been featured in Forbes “30 Under 30” and on NBC and NPR.

Famous US Role Model & Activists: Harriet Tubman (1822–1913)

Tubman is an abolitionist known for her work on the Underground Railroad, a remarkable effort to help runaway slaves to flee to safer areas. Less well known is that Ms Tubman suffered from epilepsy as a result of a severe head injury she sustained when she was beaten by her master at age 12. Even though she needed to take many rest breaks, Tubman ventured into the depths of the slave country multiple times, saving many lives.

Tom ‘Blind’ Wiggins

He was born blind (and believe autistic) and was sold into slavery, along with the rest of his family. Despite this, however, Tom had a great talent for perceiving, remembering, and reproducing sounds where he would go on to perform at concerts throughout the Americas and Europe. His extraordinary music has inspired lovers of music worldwide, including Elton John, who composed a song in his honour.

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Maya Angelou

The award-winning author, poet, civil rights activist, college professor and screenwriter who wrote a great deal of poetry, along with her memoirs, starting with I Know Why the Caged Bird Sings. Those who have read her work know that her childhood was a traumatic one. At the age of eight, Maya was sexually abused and raped by her mother’s boyfriend; as a result of her trauma, she became mute for five years. (This condition is known as selective mutism.) Dr. Angelou’s writing career, which also included essays, journalism, and drama spanned 50 years.

Fannie Lou Hamer (1917–1977)

A civil rights activist who was important in efforts to help African Americans register to vote. She suffered kidney damage after having been beaten, a condition that was the source of her famous words, “I’m sick and tired of being sick and tired.”

Johnnie Lacy (1937–2010)

Diagnosed with polio at the age of 19, Lacy and eventually needed a wheelchair to get around. From then on, she became a disability advocate and self-advocate in the struggle to be able to attend university (a right not guaranteed at the time) and for the resources to live independently in the community. Both identities were strongly intertwined.

Muhammad Ali

A champion boxer and a man who fought for racial and social justice his entire life. He acquired Parkinson’s at age 42 and became a role model for people with physical disabilities. What many may not know, however, is that Ali also had dyslexia at a time where researchers did not know much about dyslexia or how to help children who struggle with the disability. Ali was not aware of the fact that he had dyslexia, either, which led to a lack of confidence in his ability as a student.

Simone Biles

An Olympic champion who dominated the sport of gymnastics during the 2016 Rio Olympics having won four consecutive all-around titles and is the first female to do so since the 1970s. She also has competed and won 14 world championship medals. At a young age, Biles was diagnosed with Attention Deficient Hyperactive Disorder (ADHD) and, as a result of her notoriety, has been very vocal regarding her ADHD, many have classified her as a hero, especially those who have endured stigma from the disability.

Harry Belafonte (b. 1927)

A singing sensation better know for his album Calypso and ‘Banana Boat Song.’ Over his musical and drama career, he would go on to four Grammys, a Tony, and an Emmy. What most of his fans do not know is that Harry’s dyslexia became such a source of frustration that he dropped out of high school. However, he has used his cultivated eloquence not only in the arts but also as a political and social activist, along with his advocacy at Understood.org, an organization dedicated to supporting parents of children with learning disabilities.

Wilma Rudolph (1940–1994)

The ‘fastest woman in the world’. Born prematurely she endured several earlychildhood illnesses having recovered from infantile paralysis and a loss of strength to her left leg and foot. Despite this, Rudolph went on to become a legend at the 1960 Summer Olympics in Rome, earning her admiration worldwide.

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Lois Curtis

Credited as the woman with disabilities fighting for freedom for all. People with intellectual and mental disabilities can thank Lois Curtis for paving the way for them to live in the community receiving the services they need. In what was called “the most important decision for people with disabilities in history,” the Olmstead Decision justified the right for people with disabilities to live independently but would take four years to come into effect including being heard in the Supreme Court.

Missy ‘Misdemeanor’ Elliott

She serves as a role model for young women with disabilities following a diagnosis, at at the height of her career when she was diagnosed with Graves’ disease, which attacks the thyroid.

Whoopi Goldberg

An actress, comedienne and talk show host known worldwide to her fanbase. However, not as many can recognize her as a person with dyslexia. Dyslexia is a general term for disorders that involves difficulty in learning to read or interpret words, letters, and other symbols, but does not affect general intelligence.

Daymond John

A clothing entrepreneur and “Shark Tank” Star who struggled in elementary school, where he was diagnosed with a general “learning disability” without being provided many resources or support. Today, John boasts unimaginable success as a multimillionaire and entrepreneur as the cofounder and CEO of FUBU and a shark on The Shark Tank. John credits his dyslexia with setting him on his path to entrepreneurial success.

Diana Elizabeth Jordan An award-winning actress, writer, producer and director, is an important figure in the conversation about the inclusivity or lack thereof of people with disabilities in Hollywood. Jordan has cerebral palsy, which mildly affects her speech and gait. She has been acting professionally since she graduated from college. Since beginning her career, Diana has built an impressive list of over 40 credits in theatre, film and television. Solange Knowles

She shatters the glass ceiling as a woman of colour who also happens to be diagnosed with a disability that affects 10 per cent of the U.S. population: ADHD. Knowles has been outspoken about her ADHD, educating people about her disability. Through her impressive resume that includes music, art, dance and acting, Knowles is recognised as an elite in her industry.

Clarence Page

A highly accomplished journalist. He is a Pulitzer-winning syndicated columnist for the Tribune network, a member of the Chicago Tribune’s editorial board, a regular contributor to The News Hour with Jim Lehrer and has appeared on The McLaughlin Group, NBC’s The Chris Matthews Show, ABC’s Nightline and BET’s Lead Story. He is also an African American who identifies as having Attention Deficient Hyperactive Disorder (ADHD), which can affect basic functioning due to hyperactivity and a pattern of inattention. Page has been outspoken about having ADHD and educating people about his disability.

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EXAMPLES OF DISABLIST LANGUAGE. Discalimer: Please note that the following list, offer some examples of disablist / offensive terms and that as a community Shades of Noir recognises that there is likely to be many more words that can and should be included in this cannon. Where possible, we have made efforts to include historic pejorative terminology which are open to interpretation and, in many cases, can be contested. As a result, some of the following terms are considered highly offensive, but we have included them to support difficult discussions around the subject in order to support further understanding and evolve thinking with the aim of transformation. Afflicted

Suggests that higher force has cast the person down (‘affligere’ is Latin for to knock down, to weaken), or is causing them pain or suffering. Use ‘impairment’ or disabled people depending on the context.

Cripple

This word comes from Old English crypel or creopel, both related to the verb ‘to creep’. These, in turn, come from old (Middle) German ‘kripple’ meaning to be without power. The word is extremely offensive. Use person who has / person with….

Dumb or Dumbo

1. Not to be able to speak. 2. These words have come to mean lacking intelligence but people can communicate in different ways not just talking.

Dwarf

Dwarf is used to describe short people or short stature, through folklore and common usage it has negative connotations.

Feeble-minded

The word feeble comes from old French meaning ‘lacking strength’. It’s meaning was formalised in the Mental Deficiency Act 1913, to mean not an extremely pronounced mental deficiency, but one still requiring care, supervision and control. Use person with learning difficulty.

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Freak

Associated with freak show where people who were very small, tall, large or with other visible differences or impairments were put on display for the public gaze in 17th, 18th and 19th century. It means strange or abnormal. This should not be used.

Handicapped

Having an imposed disadvantage. The word may have several origins: 1. from horse races round the streets of Italian City States, such as Sienna, where really good riders had to ride one-handed, holding their hat in their other hand to make the race more equal. 2. by association with penitent sinners (often disabled people) in many parts of Europe who were forced into begging to survive and had to go up to people ‘cap in hand’.

Lame

Coming from Old English lama Old German lahm and Old Norse lami meaning crippled, paralytic or weak. In Middle English came to mean ‘crippled’ in hands or feet. Lame duck is also used to mean any disabled person or thing or lame brain meaning learning difficulties. In modern slang ‘lame’ is used for someone or something that is un-cool, boring, not exciting, not funny, weak, annoying, inadequate or a loser. In this respect ‘lame’ is used like ‘gay’ and should be challenged. It is offensive.

Idiot

The word dates from the 13th century and comes from the Latin word idiota, meaning ‘ignorant person’. Again, it featured in the Mental Deficiency Act 1913 (see Feebleminded), where it meant someone who was so mentally deficient that they should be detained for the whole of their lives.

Imbecile

This word has been around since the 16th century and comes from the Latin, imbecillus, meaning ‘feeble’ (it literally meant ‘without support’ and was originally used mainly in a physical sense). It was similarly defined in the Mental Deficiency Act, as someone incapable of managing their own affairs.

Inspirational

Defined by the OED as; “the process of being mentally stimulated to do or feel something, especially to do something creative.” It originated from the Middle English phrase “divine guidance” and from the Old French Latin form “inspiration”. However, for many disabled people, the word inspirational is considered patronising, irritating and unacceptable. They are just living their lives, like anyone else. Just because they use wheelchairs, mobility aids, canes, hearing aids and other adaptive equipment, it doesn’t mean they’re inspirational.

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Invalid

Literally means not valid, from Latin ‘invalidus’. In the 17th century it came to have a specific meaning, when referring to people, who were infirm, or disabled.

Mental or nutter or crazy

All these are informal (slang) and offensive words for people with mental health issues. One in four people have a major bout of mental distress or become mental health system users. The vast majority are not dangerous. 1 in 10 of school age students are diagnosed with mental health issues at some point in their schooling. Such young people need understanding, support and counselling, not harassment and name calling. Other names used Lunatic, Loony, Insane, Weird, Weirdo, Bonkers, Psycho and Mad.

Mentally handicapped

Was and is still used to refer to people with Learning difficulties the origin of the word handicap is as above. In the UK over 500,000 people with learning difficulties were locked away in Mental Handicap Hospitals because tests showed they had low Intelligence Quotients (IQ). These tests have since been shown to be culturally biased and only to measure one small part of how the brain works. People with learning difficulties have chosen the name “people with learning difficulties” for themselves because they think that, through education, which they have largely been denied, they can improve their situation.

Mong/Mongolian

Langdon Down was a doctor who worked at the London Hospital in Whitechapel in the 1860s. He noticed that around 1 in 800 babies was born with pronounced different features and capabilities. Their features reminded him of the Mongolian peoples. He postulated that there was a hierarchy of races (in descending order) - European, Asian, African and Mongols. Each was genetically inferior to the group above them. This was a racist theory. People with Down’s Syndrome find it extremely offensive.

Moron(ic)

Moron, Greek, meaning ‘foolish, dull, sluggish’.

Raspberry Ripple

Cockney rhyming slang for ‘cripple’, and offensive.

Retard

Still in common use in the USA for people with a learning difficulty; from the word retarded meaning held back in development – offensive.

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Spazz, spazzie or spastic

People with cerebral palsy are subject to muscle spasms or spasticity. These offensive words are sometimes used in reference to this. People with this impairment wish to be known as people with cerebral palsy or disabled people.

Special Needs

Special needs is a term that is usually associated with health and social care professionals. It’s used in places such as schools, care homes and medical facilities and clubs or societies to describe a group of disabled people. The phrase came about as an attempt to be less negative, labelling disabled children’s educational needs, rather than their condition. In my opinion, special needs describes a group of people who are unwanted, not accepted and ridiculed.

Stupid

Stupid’ was used in America at the start 20th century ‘scientifically’ to denote ‘one deficient in judgment and sense’.

The blind; The deaf; The disabled

To call any group of people ‘the’ anything is to dehumanise them.

Victim or sufferer

Disabled people are not victims of their impairment because this implies they are consciously singled out for punishment by God or a higher being. Similarly, the word sufferer can imply someone upon whom something has been imposed as a punishment by a deity.

Wheelchair-bound

Wheelchair users see their wheelchair as a means of mobility and freedom, not something that restricts them, apart from problems with lack of access.

Use blind people, deaf people or disabled people.

Source: Anti-bullying Alliance: www.anti-bullyingalliance.org.uk/sites/default/ files/field/attachment/Ato-Z-of-Offensive-language-FINAL.pdf Disability Horizons: disabilityhorizons.com/2018/07/what-is-acceptable-disability-terminology/

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KEY TERMS. Discalimer: Please note that that as a community Shades of Noir recognises that there is likely to be many more words that can and should be included in this Key Terms List. Where possible, we have made efforts to include a wide variety of key words which remain open to interpretation and, in many cases, can be contested. Ableism

Ableism defines a form of discrimination/social prejudice in favour of able-bodied people, perpetrated against people with disabilities or those who are perceived to have disabilities as inferior to the non-disabled.

Able-bodied

Term used to describe non-disabled people. Should be avoided, use non-disabled instead.

Access barriers

Inclination or prejudice for or against one person or group, especially in a way considered to be unfair.

Accessible

Easily used or accessed by disabled people : adapted for use by people with disabilities.

Accessible web design

Creating web pages according to universal design principles to eliminate or reduce barriers, including those that affect people with disabilities.

Accommodation

An adjustment to make resources accessible for disabled people.

Acquired Impairment

Aan impairment that a person acquires at some point after birth.

Adaptive technology Hardware or software products that provide access to a computer that is otherwise inaccessible to an individual with a disability. Ally

A person of one social identity group who stands up in support of members of another group; typically a member of a dominant group standing beside member(s) of a group being discriminated against or treated unjustly.

Allyship

We often use allyship to refer to bonds that link body-minds together, supporting and advocating for one another. Allyship can and must emerge among disabled people as well as among disabled and non-disabled people.

Anti-Ableism

Anti-Ableism strives to promote an anti-ableist narrative and create systemic education reform for adults, children and students with disabilities.

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Anti-Oppressive practice

Anti-oppressive practice is an interdisciplinary approach primarily rooted within the practice of social work that focuses on ending socioeconomic oppression. Anti-Oppression work seeks to recognise the oppression that exists in our society and attempts to mitigate its affects and eventually equalise the power imbalance in our communities. Basically there are certain groups in our society and communities that hold power

Assistive technology Technology used to assist a person with a disability, e.g., wheelchair, handsplints, computer-based equipment. Audism

A term used to describe a negative attitude toward deaf or hard of hearing people. It is typically thought of as a form of discrimination, prejudice, or a general lack of willingness to accommodate those who cannot hear.

BASL (Black American Sign Language)

Black American Sign Language (BASL) or Black Sign Variation (BSV) is a dialect of American Sign Language (ASL). The divergence from ASL was influenced largely by the segregation in schools in the American South.

Body politics

The term refers to the practices and policies through which powers of society regulate the human body, as well as the struggle over the degree of individual and social control of the body. The powers at play in body politics include institutional power expressed in government and laws, disciplinary power exacted in economic production, discretionary power exercised in consumption, and personal power negotiated in intimate relations.

Biopolitics

Biopolitics is a complicated concept that has been used and developed in social theory since Michel Foucault, to examine the strategies and mechanisms through which human life processes are managed under regimes of authority over knowledge, power, and the processes of subjectivation. Biopolitics is an intersectional field between human biology and politics. The term was coined by Rudolf Kjellén, a political scientist who also coined the term geopolitics, in his 1905 two-volume work The Great Powers. Kjellén sought to study ‘the civil war between social groups’ (comprising the state) from a biological perspective and thus named his putative discipline ‘biopolitics’.

Body shaming

The action or practice of humiliating someone by making mocking or critical comments about their body shape or size.

BSL (British Sign Language)

Acronym for British Sign Language.

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CreativelyAble

Blogger, Larree Carnes, came up with the term CreativelyAble after becaming disabled after an illness in 2004. “I came up with it because I have had to be creative in so many ways: in the way I shop (for example, adding a makeshift cart to the back of my scooter); getting jobs done around the house (such as adding extenders to pick fruit from my tree or clean my windows); being a team mom for my son at sporting events (I had to bring snacks for the team and cut oranges etc, even though my disability is in my hands, and so much more.) That’s why I say I am “creative” versus “dis” abled.”

Crip (disability term)

“Crip is considered to be an inclusive term, representing all disabilities: people with vastly divergent physical and psychological differences. Crip represents the contemporary disability rights movement and is an ‘insider’ term for disability culture.

‘Crip’ a space,

To crip’ a space means to challange the (preexisting) space’s default norms (e.g., heteronormativity, able-bodiedness) when exposing them to disability culture or queer culture.

Cripping

‘Cripping’ insists that the system of compulsory able-bodiedness is not and should not be the norm (Allison Hitt 2012 book review); cripping also imagines bodies and desires that fit beyond that system. McRuer’s book (Crip Theory: Cultural Signs of Queerness and Disability, 2006) defines the act of cripping as situated alongside popular cultural representations of disability and queerness, analysing how they operate systemically, and suggests new and other ways of creating better or perhaps, more accurate representations.

Crip Pride

Those who identify as crips use the term for various reasons: To express pride in being a member of the disability community (“crip pride”) To express resilience in crips’ struggle for rights and equity and their resistance against ableism and oppression.

Criptionary

A criptionary is a humorous satire (including several other works) written by Maria R Palacios (2013, ePub) aimed at empowering and educating audiences about to the everyday struggles and obstacles faced by persons with disabilities, while transforming the political incorrectness of the word ‘crip’ into a message of disability activism through which disabled people can reclaim their bodies and lives.

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Crip Theory / Culture Crip represents the contemporary disability rights wave and is an “insider” term for disability culture. To identify as a Crip or with the Crip community means you identify as a member of the disability community or as an Ally to the disability community, and that you recognise a distinct disability culture. Critically ‘Queer’

A ‘critically queer’ position is one that embraces the failure of acting within the norm that works to weaken that norm. Similarly, a critically disabled position embraces the work of the disability rights movement and DS, resists compulsory able-bodiedness, and demands a new public sphere where full participation is not dependent on ability.

Deaf

Partially or wholly lacking or deprived of the sense of hearing; unable to hear.

Disabled

The OED defines it as; “(of a person) having a physical or mental condition that limits their movements, senses, or activities.” Many prefer the ‘people with disabilities’ approach. It is important that the name goes first – it’s about the person with a disability, not the disability.

Disabled people

Appropriate term for people with impairmets.

Disabled villain

Characters in fiction that bear physical or mental markers of difference from perceived societal norms are frequently positioned as villains within a text. Disabled people’s visible differences from the abled majority are meant to evoke fear in audiences that can perpetuate the mindset of disabled people being a threat to individual or public interests and well-being.

Disability

A physical or mental condition that limits a person’s movements, senses, or activities. You are disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ effect on your ability to do normal daily activities. A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).

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Disablism

Disablism is discrimination or prejudice against disabled people. As such, it is often said that ‘an organisation can have a problem with disablism or a disablist attitude’. Disablism, like the term ‘ableism’ are words that are used to describe disability discrimination and prejudice. A bit like sexism and racism are used to describe discrimination against women and different ethnic groups. The difference between disablism and ableism: Whilst both terms describe disability discrimination, but the emphasis is different, ‘disablism’ emphasises discrimination against disabled people whereas ‘ableism’ emphasises discrimination in favour of non-disabled people.

Disablist Language

Misuse of perjorative language to people with learning disabilities. Discriminating or prejudiced against people who are disabled.

Disability Activism

The disability rights movement is a global social movement to secure equal opportunities and equal rights for all people with disabilities. Disability activists are working to break institutional, physical, and societal barriers that prevent people with disabilities from living their lives like other citisens.

Disability Culture

Disability culture is a widely used concept developed in the late 1980s to capture differences in lifestyle that are caused or promoted by disability. Disability cultures exist as communities of people around topics of disability. Disability cultures exist as communities of people around topics of disability whose core values as a culture are reflected in art, conversation, goals, or behaviours.

Disability Rights

The disability rights movement is a global social movement to secure equal opportunities and equal rights for all people with disabilities. Disability activists are working to break institutional, physical, and societal barriers that prevent people with disabilities from living their lives like other citizens.

Disability Justice

Disability justice is a framework that examines disability and ableism as it relates to other forms of oppression and identity (race, class, gender, sexuality, citizenship, incarceration, size, etc.). It was developed starting in 2005 by the Disability Justice Collective, a group of ‘Black, brown, queer and trans’ people including Patty Berne, Mia Mingus, Stacey Milbern, Leroy F. Moore Jr., Eli Clare, and Sebastian Margaret. In disability justice, disability is not defined in ‘white terms, or male terms, or straight terms’. Disability justice also acknowledges that ‘ableism helps make racism, christian supremacy, sexism, and queer- and transphobia possible’ and that all those systems of oppression are intertwined. The disability justice framework is being applied to the intersectional reexamination of a wide range of disability, human rights, and justice movements. DISABLED PEOPLE: THE VOICE OF MANY. // 277


Disability Studies

Disability studies is an academic discipline that examines the meaning, nature, and consequences of disability. Initially, the field focused on the division between “impairment” and “disability”, where impairment was an impairment of an individual’s mind or body, while disability was considered a social construct. Disability studies emerged in the 1980s primarily in the US, the UK, and Canada. This premise gave rise to two distinct models of disability: the social and medical models of disability. In 1999 the social model was universally accepted as the model preferred by the field. However, in recent years, the division between the social and medical models has been challenged. Additionally there has been an increased focus on interdisciplinary research. Disability studies courses include work in disability history, theory, legislation, policy, ethics, and the arts. However, students are taught to focus on the lived experiences of individuals with disabilities in practical terms. The field is focused on increasing individuals with disabilities access to civil rights and improving their quality of life.

Equal Opportunities

An individual's right to be treated fairly without discrimination, no matter what their sex, race or age is.

Equality

A state in which all individuals or social groups are treated fairly, equally and no less favourably; be it by virtue of their race, gender, disability, religion or belief, sexual orientation or age. Equality stands for inclusion and is against discrimination.

Eugenics

Eugenics is the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to be superior.

Global North/ South Divide

The North–South divide is a socio-economic and political division of Earth popularised in the late 20th century and early 21st century. The concept of a gap between the Global North and the Global South in terms of development and wealth. Generally, definitions of the Global North include the United States, Canada, almost all the European countries, Israel, Cyprus, Japan, Singapore, South Korea, Australia, and New Zealand. The North is mostly correlated with the Western world and the First World, plus much of the Second World, while the South largely corresponds with the Third World and Eastern world. The two groups are often defined in terms of their differing levels of wealth, economic development, income inequality, democracy, and political and economic freedom, as defined by freedom indices.

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Global South

The Global South is an emerging term, used by the World Bank and other organisations, identifying countries with one side of the underlying global North–South divide, the other side being the countries of the Global North. The phrase “Global South” refers broadly to the regions of Latin America, Asia, Africa, and Oceania. It is one of a family of terms, including “Third World” and “Periphery,” that denote regions outside Europe and North America, mostly

Health care provider

A licensed doctor, nurse, nurse practitioner, nurse-midwife, or physician assistant.

Hearing impairments Complete or partial loss of ability to hear caused by a variety of injuries or diseases including congenital defects. Human rights

A right which is believed to belong to every person.

Identity

In contexts where their differences are visible, persons with disabilities often face stigma. People frequently react to disabled presence with fear, pity, patronization, intrusive gazes, revulsion, or disregard. These reactions can, and often do, exclude persons with disabilities from accessing social spaces along with the benefits and resources these spaces provide. Ableist ideas are frequently internalised when disabled people are pressured by the people and institutions around them to hide and downplay their disabled difference, or, “pass”.

Identity-first language

Identity-first language describes the person as “disabled”. Some people prefer this and argue that this fits the social model even better than does people-first language, as it emphasises that the person is disabled not by their body, but by a world that does not accommodate them.Using the identity-first language also parallels how people talk about other aspects of identity and diversity.

Impairment

The state of being diminished, weakened, or damaged, especially mentally or physically. If someone has an impairment , they have a condition which causes diminishment functionality or ability.

Impairment (Medical) Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genitourinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities Inclusive

Not excluding any section of society or any party involved in something.

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Inclusive Education

Inclusive education – also called inclusion – is education that includes everyone, with non-disabled and Disabled people (including those with “special educational needs”) learning together in mainstream schools, colleges and universities.

Inclusive language

Inclusive language is language that is free from words, phrases or tones that reflect prejudiced, stereotyped or discriminatory views of particular people or groups. It is also language that doesn't deliberately or inadvertently exclude people from being seen as part of a group.

Inclusive Practice

Inclusive practice can be defined as attitudes and methods that ensure all learners can access mainstream education. Everyone works to make sure all learners feel welcome and valued, and that they get the right support to help them develop their talents and achieve their goals. When education is truly inclusive it can actually benefit all learners, not only Disabled learners.

Inclusivity

The practice or policy of including people who might otherwise be excluded or marginalised, such as those who have physical or mental disabilities and members of minority groups.

Inspiration Porn

Inspiration porn refers to portrayals of persons with disabilities in which they are presented as being inspiring simply because the person has a disability. These portrayals are criticized because they are created with the intent of making nondisabled viewers feel better about themselves in comparison to the individual portrayed. Rather than recognising the humanity of persons with disabilities, inspiration porn turns them into objects of inspiration for a non-disabled audience.

Intellectual disabled

A person with significant impairment in intellectual ability.

Intellectual disability

Intellectual disability is another term for a learning disability. According to the American Association on Intellectual and Developmental Disabilities, it is defined as; “a disability characterised by significant limitations both in intellectual functioning (reasoning, learning, problem-solving) and in adaptive behaviour, which covers a range of everyday social and practical skills.” This phrase indicates that people with this kind of disability aren’t stupid, but simply require support to carry out certain tasks, such as reading, writing, counting and communicating.

Intersectional

Is a concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another. The concept first came from legal scholar Kimberlé Crenshaw in 1989 and is largely used in critical theories, especially Feminist theory, when discussing systematic oppression. When possible, credit Kimberlé Crenshaw for coining the term "intersectionality" and bringing the concept to wider attention.

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Intersectionality

A term coined by Kimberlé Crenshaw which examines how social identities are used as a way to discriminate against marginalised groups who experience multiple forms of oppression simultaneously. Specifically women of colour who suffer from both gender and racial discrimination.

Intersections of Race & Gender

The experiences that disabled people have to navigate social institutions vary greatly as a function of what other social categories they may belong to. The categories that intersect with a disability to create unique experiences of ableism include, but aren’t limited to two kinds of disability intersection, race disability intersection and gender disability intersection.

Intellectual disability

Significant impairment in intellectual ability accompanied by deficits in skills necessary for independent daily functioning.

Intersectional Disability

Intersectionality within the experience of (disabled) people of colour - for example, the impact of disability in queer and feminist spaces, and vice versa - as central to its approach, Highlighting microaggressions, (lack of) representation, issues of accessibility and ‘Inspiration Porn’ that become central to the activism within this arena. More fundamentally, this newer model shifts from a framework of ‘rights’ to ‘justice’, concerned with disability in the framework of social justice. In other words, campaigning on disability without acknowledging that all oppression is connected and that intersections of identity and experience within the disability movement matter will mean it is a movement that does not lead to full justice for disabled people or other marginalised/oppressed people.

Invisible Disability

An ‘invisible’, ‘non-visible’, ‘hidden’, ‘non-apparent’, or ‘unseen’ disability is any physical, mental, or emotional impairment that goes largely unnoticed. An invisible disability can include, but is not limited to: cognitive impairment and brain injury; the autism spectrum; chronic illnesses like multiple sclerosis, chronic fatigue, chronic pain, and fibromyalgia; d/Deaf and/or hard of hearing; blindness and/or low vision; anxiety, depression, PTSD, and many more. We understand the body as always changing, so disability and chronic illness may be unstable or periodic throughout one’s life. This can create stigma and compound prejudice.

Language

The method of human communication, either spoken or written, consisting of the use of words in a structured and conventional way.

Learning Difficulty

Affects the way information is learned and processed but occurs independently of intelligence e.g Dyslexia, ADHD, Autism, Aspergers.

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Learning Disability

A reduced intellectual ability and difficulty with everyday activities which affects someone for their whole life.

Lip read

(Of a deaf person) understand speech from observing a speaker's lip movements.

Marginalise

To relegate to the fringes, out of the mainstream; make seem unimportant: to place in a position of marginal importance, influence, or power.

Mad Pride

The objective of the mad pride movemen is to continue the destigmatisation of mental illness.

Medical model of disability

The medical model of disability, or medical model, arose from the biomedical perception of disability. The model links a disability diagnosis to an individual's physical body. The model supposes that this disability may reduce the individual's quality of life and the aim is, with medical intervention, this disability will be diminished or corrected.

Mental Health

A state of emotional well-being in which an individual is able to use his or her thinking and feeling abilities, live with others, and meet the ordinary demands of everyday life.

Mental Illness

A state where the persons mental health is disrupted so that their thinking, emotions or behaviour are affected to an extent that it has an effect on their daily life. It does not necessarily mean that they have a diagnosable psychiatric disorder or need any form or medical treatment.

Mental Well-being

A good or satisfactory condition of thinking, feeling and living; a state characterized by health, happiness, and prosperity. It is a broader term than mental health and includes the wider aspects of a persons life, not just how they feel.

Minority

A small group of people within a community or country, differing from the main population in race, religion, language, or political persuasion.

Mobility impairment

An impairment that affects movement ranging from gross motor skills such as walking to fine motor movement involving manipulation of objects by hand.

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Neurodiversity

Neurodiversity is a portmanteau of ‘neurological’ and ‘diversity’ that was popularised in the late 1990s by Australian sociologist Judy Singer and American journalist Harvey Blume. The term emerged as a challenge to prevailing views that certain neurodevelopmental disorders are inherently pathological and instead adopts the social model of disability. The subsequent neurodiversity paradigm has been controversial among autism advocates, with opponents saying that its conceptualisation of the autism spectrum doesn’t reflect the realities of individuals who have high support needs. Thus ‘neurodiversity’ defines an individual who displays or characterises autistic or other neurologically atypical patterns of thought or behaviour; not neurotypical. Neurodiversity refers to variations in the human brain regarding sociability, learning, attention, mood, and other mental functions.

Neuroqueer Disidentification

Neuroqueer is both a verb and an adjective. As a verb, it refers to a broad range of interrelated practices. As an adjective it describes things that are associated with those practices or that result from those practices: neuroqueer theory, neuroqueer perspectives, neuroqueer narratives, neuroqueer literature, neuroqueer art, neuroqueer culture, neuroqueer community. And as an adjective, neuroqueer can also serve as a label of social identity. A neuroqueer individual is an individual whose identity has in some way been shaped by their engagement in practices of neuroqueering. More information on the subject can be found here: neurocosmopolitanism.com/neuroqueer-an-introduction/

Neurocosmopolitanism

Coined by Nick Walker, Neurocosmopolitanism consists of approaching neurodiversity in the same spirit in which the true cosmopolitan approaches cultural diversity. To embrace the neurodiversity paradigm is to refuse to pathologise neurocognitive styles and experiences that differ from our own, and to accept neurodiversity as a natural, healthy, and important form of human biodiversity – a fundamental and vital characteristic of the human species, a crucial source of evolutionary and creative potential. Neurocosmopolitanism goes beyond this baseline of acceptance, as cosmopolitanism goes beyond mere tolerance of cultural differences. Neurocosmopolitanism seeks to actively explore , engage with and cultivate neurodiversity and its creative potentials in the spirit of humility, respect, continual openness, to learning and transformation. More information can be found here: neurocosmopolitanism.com/

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The Neurodiversity Movement

The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent. The Neurodiversity Movement is not a single group or organisation, is not run by any single group or organization, and has no leader. Like most civil rights movements, the Neurodiversity Movement is made up of a great many individuals, some of them organised into groups of one sort or another. These individuals and groups are quite diverse in their viewpoints, goals, concerns, political positions, affiliations, methods of activism, and interpretations of the neurodiversity paradigm. The Neurodiversity Movement began within the Autism Rights Movement, and there is still a great deal of overlap between the two movements.The most significant distinction between the two is that the Neurodiversity Movement seeks to be inclusive of all neurominorities, not just Autistics.

The Neurodiversity Paradigm

The neurodiversity paradigm is a specific perspective on neurodiversity that boils down to these fundamental principles: 1. Neurodiversity is a natural and valuable form of human diversity. 2. The idea that there is one “normal” or “healthy” type of brain or mind, or one “right” style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one “normal” or “right” ethnicity, gender, or culture. ​ 3. The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.

Neurodiversity Rights

The neurodiversity movement is bringing a new perspective to a number of commonly diagnosed cognitive and neurological issues. Through the lens of neurodiversity rights advocates, the symptoms and behaviors of the people who would ordinarily be classified as non-neurotypical are simply normal expressions of human function rather than disorders to be diagnosed and treated.

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Neurominorities

A neurominority is a population of neurodivergent people about whom all of the following are true: 1. They all share a similar form of neurodivergence. 2. The form of neurodivergence they share is one of those forms that is largely innate and that is inseparable from who they are, constituting an intrinsic and pervasive factor in their psyches, personalities, and fundamental ways of relating to the world. 3. The form of neurodivergence they share is one to which the neurotypical majority tends to respond with some degree of prejudice, misunderstanding, discrimination, and/or oppression (often facilitated by classifying that form of neurodivergence as a medical pathology).

Neurotypical

Neurotypical, often abbreviated as NT, means having a style of neurocognitive functioning that falls within the dominant societal standards of “normal.” Neurotypical is the opposite of neurodivergent. Neurotypicality is the condition from which neurodivergent people diverge. Neurotypical bears the same sort of relationship to neurodivergent that straight bears to queer.

Neuro-clowning

‘Neuro-clowning’ as being playful with your neurology, to destabilise the presumptions of neuronormativity that seriousness is crucial and social ‘failure’ is shameful.More information can be found here: Performing Failure: Integrating Clowning and Play into the Neuroqueering Project, by Simone René Antillón. Available from http://neuroqueer. blogspot.com/2016/10/performing-failure-integrating-clowning.html

Nondisabled

Person not affected by an impairment or disability .

Normative

Normative generally means relating to an evaluative standard. Normativity is the phenomenon in human societies of designating some actions or outcomes as good or desirable or permissible and others as bad or undesirable or impermissible.

Normative theory

Hypotheses or other statements about what is right and wrong, desirable or undesirable, just or unjust in society. The majority of sociologists consider it illegitimate to move from explanation to evaluation.

Optical allyship

Allyship that only serves at the surface level to perform the ally, it makes a statement, but does not go beneath the surface and is not aimed from breaking the systems of power that oppress - Latham Thomas.

Paralympian

Someone who has competed at a Paralympic Games.

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Paralympic Pathway

Pathway open to classifications and related events that are included in the Paralympic Games.

People-first language

People-first language is one way to talk about disability that some people prefer. Using people-first language is said to put the person before the disability, so those individuals who prefer people-first language, prefer to be called, ‘a person with a disability’. A similar kind of ‘people-first’ terminology is also used in the UK, but more often identity-first language is generally preferred over people-first language. The use of “people-first” terminology has given rise to the use of the acronym PWD to refer to person(s) (or people) with disabilities (or disability). Which style of language used varies between different countries, groups and individuals.

People with learning difficulties

A learning disability is defined by the Department of Health as a “significant reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood”.

Peripheral neuropathy

A condition caused by damage to the nerves in the peripheral nervous system which includes nerves that run from the brain and spinal cord to the rest of the body.

Prejudice

Hatred towards someone based on their identity. Example: An oppressed person of colour can be prejudice against privileged races but cannot be racist.

Privilege

A special right, advantage, or immunity granted or available only to a particular person or group.

Radical Allyship

Radical Disability Allyship as the concept, promise, and experience of allyship in regard to disability where non-disabled individuals use their privledge to promote other people’s rights and growth, and radicalise it in ways that work toward justice and access built on mutual respect and care.

Representation

Refers to equality in opportunity and visibility. For example, representative media is media that is reflective of the variety of races, cultures, genders or religions that its entire readership belongs to.

Sensory impairment

A disability that affects touch, sight and/or hearing.

Self-esteem

Confidence in one's own worth or abilities.

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Self advocacy

Some disabled people have attempted to shift criticism away from their bodies and impairments and towards the social institutions that oppress them relative to their abled peers. Disability activism that demands many grievances be addressed, such as lack of accessibility, poor representation in media, general disrespect, and lack of recognition, originates from a social model framework. Embracing disability as a positive identity by becoming involved in disabled communities and participating in disabled culture can be an effective way to combat internalised prejudice; and can challenge dominant narratives about disability.

Sign Language

A system of communication using visual gestures and signs, as used by deaf people.

Slactivismt

The concept of ‘Slactivism’ is the practice of supporting a political or social cause by means such as social media or online petitions, characterised as involving very little effort or commitment. The term ‘slacktivism’ was first coined by EnglishCanadian journalist, Malcolm Gladwell, who defined it as ‘the way of the new style activist who just signs online petitions and shares on Facebook, instead of the banner waving, old fashioned street style, brawling with coppers activist days’.

Social Construct

A concept or perception of something based on the collective views developed and maintained within a society or social group; a social phenomenon or convention originating within and cultivated by society or a particular social group, as opposed to existing inherently or naturally.

Social model of disability (UK)

The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people.

Specific Learning Difference (SpLD)

The term ‘Specific Learning Difference’ (SpLD) refers to a difference / difficulty people have with particular aspects of learning. The most common SpLDs are dyslexia, dyspraxia, attention deficit disorder (ADD), attention deficit hyperactivity disorder, dyscalculia and dysgraphia.

Specific Learning Disability

Disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which may manifest itself in difficulties listening, thinking, speaking, reading, writing, spelling, or doing mathematical calculations. Frequent limitations include hyperactivity, distractibility, emotional instability, visual and/or auditory perception difficulties and/or motor limitations, depending on the type(s) of learning disability.

Speech impairment

Problems in communication and related areas such as oral motor function, ranging from simple sound substitutions to the inability to understand or use language or use the oral-motor mechanism for functional speech.

Speech input or speech recognition

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Spoonie

A spoonie can refer to any individual who suffers from a chronic illness. These illnesses are often invisible; to most people, spoonies may appear healthy and able-bodied, especially when they are young. As such, the spoon theory or spoon metaphor is a disability metaphor, a neologism used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness.

Supercrip

The supercrip trope refers to instances when the media reports on or portrays a disabled person who has made a noteworthy achievement; but center on their disability rather than what they actually did. They are portrayed as awe-inspiring for being exceptional compared to others with the same or similar conditions. This trope is widely used in reporting on disabled athletes as well as in portrayals of autistic savants.

Tropes

There are distinct tactics that the media frequently employ in representing disabled presence. These common ways of framing disability are heavily criticised for being dehumanising and failing to place importance on the perspectives of persons with disabilities.

Visually different

Visually different describes a person with a face or body disfigurement, such as a bilateral cleft lip. It is a much more polite term than disfigured. It implies that their features arenâ&#x20AC;&#x2122;t damaged, but have a different shape, size or colour to other peopleâ&#x20AC;&#x2122;s.

Vision impairments

Complete or partial loss of ability to see, caused by a variety of injuries or diseases including congenital defects. Legal blindness is defined as visual acuity of 20/200 or less in the better eye with correcting lenses, or widest diameter of visual field subtending an angular distance no greater than 20 degrees.

Visually impaired

People who are blind or partially sighted.

WCAG

Acronym for Web Content Accessibility guideline (1999).

Wheelchair user

A person who uses a wheelchair, especially because of physical impairment.

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IMAGE CAPTIONS Image 1

‘I Can Vision’ Courtesy of Lemon Art

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Portrait of Michelle Daley Courtesy of Youtube.

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Illustration of SoN Team Members Courtesy of Kana Higashino

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Portrait of Jhinuk Sarkar Courtesy of Jhinuk Sarkar

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Portrait of Robert Gale Courtesy of BOP Theatre

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‘A Window of Opportunities’ Jhinuk Sarkar (2019) Courtesy of the Artist

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‘P45 performance’ Jhinuk Sarkar (1992) Credit: Sara Dziadik Courtesy of the Artist

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Stitch Work Kalyani Sarkar Courtesy of Jhinuk Sarkar

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‘Purposelessness Movements’, as featured in Edinburgh Film Festival Courtesy of BOP Theatre Available via www.eif.co.uk/whats-on/2019/purposelessmovements

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Untitled (2019) Courtesy of Kana Higashino

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Image 11

Portrait of Gloria C Swain Photographed by Michèle Pearson Clarke. Courtesy of Art Gallery of Southwestern Available via agsm.ca/lunch-look-tour-too-shall-pass

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Screenshots from Shades of Noir ‘Social Anxiety’ Key Term Video Courtesy of Shades of Noir

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Screenshots from Shades of Noir ‘Social Anxiety’ Key Term Video Courtesy of Shades of Noir

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Portrait of Imani Barbarin Courtesy of Madasyn Andrews Available via www.npr.org/2019/03/20/704956960/-abledsareweird-peoplewith-disabilities-share-uncomfortable-encounters?t=1594226464997

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Portrait of Merissa Hylton Courtesy of the Artist

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Be Still & Know (That I am God) (u.d) Courtesy of Merissa Hylton

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Portrait of Jerron Herman Jerron, a dark-skinned black man stands slightly corkscrew while wearing a tank top that shows both arms lifted in a running stance, clenched. Courtesy of the Artist

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Portrait of Jerron Herman Jerron’s profile in an arabesque: His left hand sticks to his body while the right one smooths down his standing leg. He wears a long transparent tunic and shorts. Courtesy of the Artist

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The Healing Power Of Art In Intergenerational Trauma: Mad Room Gloria C. Swain (u.d) Courtesy of the Artist

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Portrait of Gloria C. Swain Courtesy of the Artist

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Portrait of Rotimi Akinsete Courtesy of Understanding ModernGov Available via www.moderngov.com/contributors/rotimi-akinsete/

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L-R: Clarke Carlisle, Rotimi Akinsete And Colin Jackson Courtesy of Paul Stead Photography Available via www.surrey.ac.uk/news/colin-jackson-andclarke-carlisle-encourage-men-talk-mental-health

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Portrait of Maria Oshodi Courtesy of Maria Oshodi Available via http://mariaoshodi.com/

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Blind aerialist Sarah Houbolt in Flight Paths (2019) Available via http://www.extant.org.uk/flightpaths/

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Blind aerialist Amelia Cavallo (2019) Courtesy of Extant Available via http://www.extant.org.uk/flightpaths/

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Glen Neath, Maria Oshodi and Kumiko Mendl Courtesy of Extant Available via http://www.extant.org.uk/flightpaths/

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Image of a Visually impaired student using a CCTV (magnified monitor) to create her drawing. Courtesy of Claudette Davis-Bonnick

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Optitex - Using a dark coloured background on the digitiser as reasonable adjustment. Courtesy of Claudette Davis-Bonnick

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Illustration by Lemon Art Courtesy of the Artists Available via https://www.thelemonart.com/

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Illustration by Lemon Art Courtesy of the Artists Available via https://www.thelemonart.com/

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Untitled (2019) Courtesy of Kana Higsahino

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Portrait of Lani Parker Courtesy of Lani Parker

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Group Portrait of The Sisters of Frida Courtesy of The Sisters of Frida

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The Sisters of Frida (Logo) Courtesy of The Sisters of Frida

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Portrait of Annabel Crowley Courtesy of Annabel Crowley

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Cover Image of the Teaching Within Prospectus, featuring Annabel Crowley (2018-19) Courtesy of Shades of Noir

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Portrait of Natalie Illum Courtesy of the Artist

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Portrait of The Triple Cripples Courtesy of the Duo

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Identity beyond Disability (Diagram) Illustration showing intersectional characteristics Courtesy of Diversity & Disability Available via https://diversityandability.com/blog/identity-beyond-disability/

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Portrait of The Triple Cripples Courtesy of the Duo

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Portrait of The Triple Cripples Courtesy of the Duo

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Portrait of Zuleika Lebow Courtesy of the Artist

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ZL Moonpaw (u.d.) Courtesy of Zuleika Lebow

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Robyn Hands (u.d) Provided by Dorota Chapko & Evie Jeffreys Courtesy of Heart n Soul at The Hub

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Job Centre (u.d) Provided by Dorota Chapko & Evie Jeffreys Courtesy of Heart n Soul at The Hub

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Identities - Davidâ&#x20AC;&#x2122;s Dad (u.d) Provided by Dorota Chapko & Evie Jeffreys Courtesy of Heart n Soul at The Hub

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Sam the bus (u.d) Provided by Dorota Chapko & Evie Jeffreys Courtesy of Heart n Soul at The Hub

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Plasticine Audience Provided by Dorota Chapko & Evie Jeffreys Courtesy of Heart n Soul at The Hub

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Collage by Favour Jonathan Courtesy of the artist

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RSA Fellowship logo Courtesy of RSA

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Portrait of Elenor Lindsay Courtesy of The Sisters of Frida

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Social Model (Diagram) Courtesy of Elenor Lindsay

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Portrait of Vilissa Thompson Courtesy of Vilissa Thompson

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Screenshot from Ana DuVernay Courtesy of Twitter Available via https://twitter.com/ava/status/1004559513549094912?lang=en

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Aisha Hinds as Harriet Tubman Courtesy of Huffington Post Available via https://www.huffpost.com/entry/memo-to-dr-ben-carsonwgns-underground-reminds_b_58bf8c4ce4b0c3276fb77f37?_guc_ consent_skip=1594231634&test_ad=taboola_iframe_desktop_news

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Portrait of Kay Ulanday Barrett Courtesy of the Fields Magazine Available via https://www.fieldsmagazine.com/ fields/2019/7/22/interview-kay-ulanday-barrett

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Portrait of Jhinuk Sarkar Courtesy of the Artist

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Portrait of Rebekah Ubuntu Courtesy of Rebekah Ubuntu

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Fibres (2019) Courtesy of Kana Higashino DISABLED PEOPLE: THE VOICE OF MANY. // 293


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Landscape Courtesy of Book Geek

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Image of Kalia Douglas-Micallef Courtesy of Anti-Ableism

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I am Not Your Inspiration Image of Kalia Douglas-Micallef Courtesy of Def Curls (@mofosunleashed) Available via http://www.def-curls.com/hear-for-the-curls-1/kalia-not-your-inspiration

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Collage of Women Courtesy of Anti-Ableism

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Anti-Ableism (Logo) Courtesy of Anti-Ableism

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Image of Khairani Barokka, Courtesy of Space Studios Available via www.spacestudios.org.uk

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Portrait of Kerima Cevik Courtesy of Kerima Cevik

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Portrait of Thomas Wiggins Courtesy of Wikipedia

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Portrait of Stephen Wiltshire Courtesy of the Artist

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Portrait of Hope Cunningham Courtesy of the Artist

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Alex Bulmer (left), and Margo Cargill (right) in Awake Promo for the International Disability Film Festival ’Superfest’ Available via http://www.awakethefilm.net

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Alex Bulmer (left), and Margo Cargill (right) in Awake Promo for the International Disability Film Festival ’Superfest’ Available via http://www.awakethefilm.net

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Image of Federico Martello Courtesy of Federico Martello

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Image of Federico Martello Courtesy of Federico Martello

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Bea’s Poem 1 Credit: Bea Webster in the film ‘Long Lost Lover’, by Sandra Alland and Ania Urbanowska. Photo by Ania Urbanowska. Description: This extreme close-up image is of poet Bea Webster’s face. She is Scottish-Thai with a septum nose piercing. She is partially in shadow, with geometric patterns projected onto her. She stares with a serious expression somewhere past the camera.

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Bea’s Poem 4 Credit: Bea Webster in the film ‘Long Lost Lover’, by Sandra Alland and Ania Urbanowska. Projected photo by Klarissa B Webster. Photo by Ania Urbanowska. Description: This image is a full-body image of poet Bea Webster. She is Scottish-Thai with a septum nose piercing and shoulder-length dark brown hair pulled back into a ponytail. She wears all white and is signing the British Sign Language for ‘embraced’, embracing herself with her hands in fists and crossed at the wrists against her chest. A black and white photo of her grandmother rubbing her hands together is projected onto and beside her. Her grandmother is in silhouette and her hair is pulled back into a bun.

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Portrait of Leroy F. Moore Jr. Courtesy of Everday Abolition Available via https://everydayabolition.com/2013/02/23/leroy-moore/

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More Than Just Music - Krip Hop Courtesy of YouTube Available via https://www.youtube.com/watch?v=PQhRYx56-BQ

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Family Portrait Courtesy of Anonymous

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Family Portrait Courtesy of Anonymous

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Intersectionality-101 (Flag) Image by (Joanna Andreasson) Courtesy of Reason Magazine Available via https://reason.com/2019/06/17/intersectionality-101/

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Portrait of Rayvenn Shaleigha D’Clark Courtesy of the Artist

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Portrait of Syrus Marcus Ware Courtesy of Syrus Marcus Ware via Huffington Post Available via https://www.huffingtonpost.ca/2018/02/24/ syrus-marcus-ware-black-lgbtq-art_a_23367754/

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Illustration by Syrus Marcus Ware Courtesy of Syrus Marcus Ware

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Illustration by Syrus Marcus Ware Courtesy of Syrus Marcus Ware

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Processed (u.d) Courtesy of Elora Kadir

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Degree Show (u.d) Courtesy of Elora Kadir

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Untitled (u.d) Courtesy of Elora Kadir

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Portrait of Chelle Destefano Photographed by Jimloachsml

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Dead Voices (Performance Final) (2020) Courtesy of the Artist Available via https://vimeo.com/419566202

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The Deaf Social Gathering Circle 1Sml (u.d) Courtesy of Chelle Snail

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Image of Sky Cubacub, founder of Rebirth Garments Photograph by Grace DuVal Courtesy of the Artist

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Image of Caleb Luna Photograph by Grace DuVal Courtesy of the Artist

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Image of Caleb Luna Ali Scott and El Taino Annerys Photograph by Grace DuVal Courtesy of the Artist

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Photograph by Grace DuVal Courtesy of the Artist

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Image of Hamja Ahsan Courtesy of the Artist

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Image of woman voting in the Aspergistan Referendum Courtesy of the Artist

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Image of Hamja’s zine ‘The Jinnah Papers’ Courtesy of the Artist

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Academic Audio Transcriptions (AAT) (Logo) Courtesy of Academic Audio Transcriptions (AAT)

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Portrait of Rebekah Ubuntu Courtesy of the Artist

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Harriet Tubman, Tom Wiggans, Fannie Lou Hamer, Maya Angelou, Wilma Rudolph, and Harry Belafonte all set examples for people with disabilities Description: Notable Black Activists in The Disability Canon, as seen in ‘Black History Month: Visiting Prominent African Americans with Disabilities’ by Dan (2019) Available via https://advopps.org/black-history-monthprominent-african-americans-disabilities-2019/

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Mogk, M.E. (2014) Different Bodies : Essays on Disability in Film and Television, McFarland & Company, Incorporated Publishers Sandal, C., Auslander, P. (2005) Bodies in Commotion: Disability & Performance, Michigan: The University of Michigan Press Shakespeare, T. (2000) Help: Imagining Welfare, British Association of Social Workers Shakespeare, T. (2006) Disability Rights and Wrongs, Oxon: Routledge Swain, J., Finkelstein, V., French, S. and Oliver, M. (1993) Disabling Barriers – Enabling Environments. London: Sage.


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Gillborn, D. (2015) Intersectionality, critical race theory, and the primacy of racism: Race, class, gender, and disability in education. Qualitative Inquiry, 21(3), pp.277-287.

Charlton, J. (1998). Nothing About Us Without Us: Disability Oppression and Empowerment. University of California Press. Retrieved from www. jstor.org/stable/10.1525/j.ctt1pnqn9 Chikwiri, C. (2017). Shona, because of you I pronounce the O’s in onions and ovens. [online] Shadesofnoir.org.uk. Available at: shadesofnoir.org.uk/shonabecause-of-you-i-pronounce-the-os-in-onionsand-ovens/ (Accessed 19 Mar. 2019).

Thomsen, S., McCoy, J., Gustafson, R. and Williams, H. (2002). Motivations for Reading Beauty and Fashion Magazines and Anorexic Risk in College-Age Women. Media Psychology, 4(2), pp.113-135. Wolff, Ulrika & Lundberg, Ingvar. (2002). The Prevalence of Dyslexia Among Art Students. Dyslexia (Chichester, England). 8. 34-42. 10.1002/dys.211. Online Amssa.org. (2005). What is in a word? The evolution of disability language. [online] Available at: www.amssa.org/wp-content/ uploads/2016/01/watson-hyatt-what-isin-a-word.pdf [Accessed 7 Apr. 2019]. Brown, L. (n.d.). Identity-First Language. [online] Autistic Self Advocacy Network. Available at: autisticadvocacy.org/about-asan/ identity-first-language/ [Accessed 7 Apr. 2019].

Crow, M. (2017). Anarchism: in the Conversations of Neurodiversity. [online] The Anarchist Library. Available at: theanarchistlibrary.org/library/maxxcrow-anarchism-in-the-conversations-ofneurodiversity [Accessed 10 May 2019]. Costello, C. (2018) How Capitalism Contributed to Modern Conceptions of Disability. Available at: themighty. com/2018/03/capitalism-andmodern-conceptions-of-disability/ (Accessed: 25/4 2019). Dem, G. (2019) It’s not just Lupita Nyong’o, horror films have long demonised disabled people. Available at: gal-dem. com/us-horror-films-have-long-demoniseddisabled-people/ (Accessed: 12/4/19). DISABLED PEOPLE: THE VOICE OF MANY. // 299


Disabled Peopleâ&#x20AC;&#x2122;s Association, Singapore (DPA) (2015). Glossary of Disability Terminology. [online] Dpa.org.sg. Available at: www.dpa.org.sg/wp-content/ uploads/2015/10/DPA-Disability-GlossaryFINAL.pdf (Accessed 7 Apr. 2019). Do-IT. (n.d.). Hidden Impairments/ Learning Difficulties/Neurodiversity - Do-IT Profiler. [online] Available at: doitprofiler.com/resources/employer/ neurodiversity/ [Accessed 10 May 2019]. En.wikipedia.org. (n.d.). Neurodiversity. [online] Available at: en.wikipedia.org/wiki/ Neurodiversity [Accessed 10 May 2019]. En.wikipedia.org. (n.d.). Refrigerator Mother Theory. [online] Available at: en.wikipedia.org/wiki/Refrigerator_ mother_theory [Accessed 10 May 2019]. Fabian, R. (2018). What is Invisible Illness? (+ How to Explain it to Others) - #1 Mental Health Blog - Talkspace. [online] #1 Mental Health Blog - Talkspace. Available at: www.talkspace.com/blog/ what-is-invisible-illness-how-to-explainit-to-others/ [Accessed 10 May 2019]. Faragher, J. (2018). Why employers should be hiring with neurodiversity in mind. [online] People Management. Available at: www.peoplemanagement. co.uk/long-reads/articles/employers-hiringneurodiversity [Accessed 10 May 2019]. GOV.UK. (2018). Inclusive language: words to use and avoid when writing about disability. [online] Available at: www.gov.uk/government/publications/ inclusive-communication/inclusive-languagewords-to-use-and-avoid-when-writingabout-disability [Accessed 7 Apr. 2019]. Hentschel, E. (n.d.). [ebook] Available at: boris.unibe.ch/41933/1/303-737-1PB.pdf [Accessed 19 Mar. 2019].

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Hiari, T. (2018). Neurodiversity is Dead. Now What? - Mad In America. [online] Mad In America. Available at: www. madinamerica.com/2018/04/neurodiversitydead-now-what/ [Accessed 10 May 2019]. Holland, J. (2017). The hidden challenges of invisible disabilities. [online] BBC. com. Available at: www.bbc.com/capital/ story/20170605-the-hidden-challenges-ofinvisible-disabilities [Accessed 10 May 2019]. Hughes, J. (2016). #intersectionalND. [online] Discourse Analysis and Disability Rights. Available at: jessmfhughes. com/2016/01/04/intersectionalnd/ [Accessed 10 May 2019]. Invisible Disability Project. (n.d.). Invisible Disability Project | Disrupting the Silence. [online] Available at: www.invisibledisabilityproject. org [Accessed 10 May 2019]. Knapton, S. (2018). Sleep deprivation fuels loneliness because tired people are socially repellent, say scientists. [online] The Telegraph. Available at: www. telegraph.co.uk/science/2018/08/14/sleepdeprivation-fuels-loneliness-tired-peoplesocially-repellent/ [Accessed 9 Oct. 2018]. Marsh, S. and Clark, L. (2002). Patriarchy in the UK: The Language of Disability. [online] Disability-studies.leeds.ac.uk. Available at: disability-studies.leeds.ac.uk/wp-content/ uploads/sites/40/library/Clark-Laurencelanguage.pdf [Accessed 7 Apr. 2019]. National Authority (n.d.). Appropriate Terms to Use | The National Disability Authority. [online] Nda.ie. Available at: nda. ie/Publications/Attitudes/Appropriate-Terms-toUse-about-Disability/ [Accessed 7 Apr. 2019].


Nerenberg, J. (2016). Does Neurodiversity Have a Future?. [online] Greater Good. Available at: greatergood.berkeley.edu/ article/item/does_neurodiversity_have_a_ future [Accessed 10 May 2019]. Powell, R. (2018) What Hollywood Gets Wrong About Disabilities. Available at: www. huffpost.com/entry/opinion-powell-whathollywood-gets-wrong-about-disabilities_n_5a9 ef0ffe4b0d4f5b66b1882 (Accessed: 12/4/19). Pulver, A. (2019) Lupita Nyong’o apologises after Us ‘evil’ voice disability row. Available at: www.theguardian.com/film/2019/ apr/01/lupita-nyongo-apologises-after-usdisability-voice-row (Accessed: 12/4/19).

TV Tropes (2019) Evil Cripple. Available at: tvtropes.org/pmwiki/pmwiki.php/Main/ EvilCripple (Accessed: 28/4/19). Uguwu, R. (2019) Why Lupita Nyong’o’s ‘Us’ Voice Sounds So Creepy. Available at: www.nytimes.com/2019/03/24/movies/ why-lupita-nyongos-us-voice-sounds-socreepy.html (Accessed: 12/4/19). YouTube (2014). Inspiration porn and the objectification of disability: Stella Young at TEDxSydney 2014. [video] Available at: www.youtube.com/watch?v=SxrS7-I_ sMQ [Accessed 30 Aug. 2019].

Robison, J. (2018). What is Neurodiversity?. [online] Psychology Today. Available at: www.psychologytoday.com/gb/blog/ my-life-aspergers/201310/what-isneurodiversity [Accessed 10 May 2019]. Rose, D. (2004). BBC NEWS | Magazine | Don’t call me handicapped!. [online] bbc.co.uk. Available at: news. bbc.co.uk/1/hi/magazine/3708576. stm [Accessed 7 Apr. 2019]. Silverman, A. (2018). Disability Language Style Guide | National Center on Disability and Journalism. [online] Ncdj.org. Available at: ncdj.org/style-guide/ [Accessed 7 Apr. 2019]. Special Olympics (2019) What is Intellectual Disability?. Available at: www.specialolympics. org/about/intellectual-disabilities/what-isintellectual-disability (Assessed: 25/4 2019). Tan, K. (2018). What else could ‘neurodiversity’ look like?. [online] Disability Arts Online. Available at: disabilityarts. online/magazine/opinion/else-neurodiversitylook-like/ [Accessed 10 May 2019].

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FURTHER READING. Books: Albrecht, Gary L., ed. Encyclopedia of Disability (5 vol. Sage, 2005) Antrobus, R., (2018). The Perseverance, Penned in the Margins Asch, A, Rosemarie G.T, Sumi, C, FoX. A.M, Brueggemann, B.J, Kroll, T, Chinn S.E et al. (2004) Gendering disability. Rutgers University Press. Autism Women’s Network. (n.d.) Autism and race anthology. Barnes, C. and G. Mercer. Exploring disability [2nd edition]. Cambridge, Polity Press, 2010. Bell, Christopher, ed. Blackness and Disability: Critical Examinations and Cultural Interventions (Forecaast Series). LIT Verlag Münster, 2011. Ben-Moshe, L., Chapman, C., and Carey, A., eds. Disability Incarcerated: Imprisonment and Disability in the United States and Canada. Palgrave Macmillan, 2014. Bailey, M. and Mobley, I. A. (2019) ‘Work in the Intersections: A Black Feminist Disability Framework’, Gender & Society, 33(1), pp. 19–40. Brown, L. (2015, Apr. 14). Undoing racism and anti-blackness in disability justice. Autistic Hoya.

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Brown, R. L. and Moloney, M. E. (2019) ‘Intersectionality, Work, and Well-Being: The Effects of Gender and Disability’, Gender & Society, 33(1), pp. 94–122. Burch, Susan, and Paul K. Longmore, eds. Encyclopedia of American Disability History (3 Vol. 2009) Burch, Susan and Michael Rembis. Disability Histories. Urbana, IL: University of Illinois Press, 2014. Campbell, Fiona K. “”Contours of Ableism: The Production of Disability and Abledness””, Palgrave Macmillan, 2009. Campbell, J. and Oliver. M, (2013). Disability politics: understanding our past, changing our future. Routledge. Vancouver. Chaplin, D., Twigg, J. and Lovell, E., 2019. Resilience Intel - Intersectional Approaches To Vulnerability Reduction And ResilienceBuilding. [ebook] London: ODI, pp.1-35. Corker, M. and Shakespeare, T. eds., (2002). Disability/postmodernity: Embodying disability theory. Bloomsbury Publishing. Corker, Mairian and Tom Shakespeare. Disability/Postmodernity: Embodying Disability Theory, Continuum, 2002.


Crenshaw, K. (2003). Traffic at the crossroads: Multiple oppressions. In R. Morgan (Ed.), Sisterhood is forever: The women’s anthology for the new millennium(pp. 43–57). New York, NY: Washington Square Press Davis, Lennard J., ed. The Disability Studies Reader. Routledge 1997 Danforth, S. and Gabel, S.L. eds., (2006). Vital questions facing disability studies in education (Vol. 2). Peter Lang. Vancouver Davis, L.J. (ed.) (2017) The disability studies reader, New York: Routledge DePoy, Elizabeth, and Stephen Gilson, Studying Disability:. Los Angeles, CA: Sage 2011. Dodd, J., Garland-Thomson, R., Sandell, R. (eds.) (2010) Re-presenting disability: activism and agency in the museum, London: Routledge Egner, J. E. (2019) ‘“The Disability Rights Community was Never Mine”: Neuroqueer Disidentification’, Gender & Society, 33(1), pp. 123–147. Erevelles N. (2011). Disability and difference in global contexts: Enabling a transformative body politic. New York, NY: Palgrave Macmillan. Fraser, B., (2013). Disability Studies and Spanish Culture: Films, Novels, the Comic and the Public Exhibition. Oxford University Press. Fries, K. (ed.) (1997) Staring back: The Disability Experience from the Inside Out, New York City: Plume Books

Gallop, J. (2019) Sexuality, disability, and ageing: queer temporalities of the phallus, Durham, North Carolina: Duke University Press García-Iriarte, E. (2015). Disability and Human Rights: Global Perspectives, Palgrave Goodley, D., (2016). Disability studies: An interdisciplinary introduction. Sage. Goodley, D., Hughes, B. and Davis, L. eds., 2012. Disability and social theory: New developments and directions. Springer. Guter, Bob, and John R. Killacky, Queer Crips: Disabled Gay Men and Their Stories. New York: Harrington Park Press, 2004. Haller, B.A. (2010). Representing Disability in an Ableist World: Essays on Mass Media. Louisville, KY: Advocado Press. Huijg, Dieuwertje. (2019). The Vulnerable, the Dependant and the Scrounger: Intersectional Reflections on Disability, Care, Health and Migration in the Brexit Project. Huijg, Dieuwertje. (2019). Intersectional agency: A theoretical exploration of agency at the junction of social categories and power, based on conversations with racially privileged feminist activists from São Paulo, Brazil. Huijg, Dieuwertje. (2018). “The vulnerable, the dependant and the scrounger: intersectional reflections on disability, care, health and migration in the Brexit Project” (pre-print, expected in 2019). Huijg, Dieuwertje. (2013). Tension in Intersectional Agency: A Theoretical Discussion of the Interior Conflict of White, Feminist Activists’ Intersectional Location. Journal of International Women’s Studies. 13. 3-18. DISABLED PEOPLE: THE VOICE OF MANY. // 303


Ignagni, E., Fudge-Schormans, A., Liddiard, K. and Runswick-Cole, K. (2016) ‘Some people aren’t allowed to love: Intimate Citizenship in the lives of people labelled with intellectual disabilities’, Disability and Society. Johnstone, David. An Introduction to Disability Studies, David Fulton Publishers Ltd 2001 Johnston, K, 2016. Disability Theatre and Modern Drama: Recasting Modernism. Bloomsbury Publishing. Kim Q. Hall ed., (2011) Feminist disability studies. Indiana University Press. Knittel, S.C., (2015) The historical uncanny: disability, ethnicity, and the politics of Holocaust memory. Modern Language Initiative Kuppers, P., (2013) Disability and contemporary performance: Bodies on the edge. Routledge. Kuppers, P. (2014). Studying Disability Arts and Culture: An Introduction. New York: Palgrave Macmillan Linton, Simi. Claiming Disability: Knowledge and Identity. New York University Press, 1998. Lorde, A. (1984). Sister outsider: Essays and speeches. Trumansburg, NY: Crossing Press. Lopez; Casasnovas; Nicodemo (2016). “Transition and duration in disability: New evidence from administrative data”. Disability and Health Journal. 9 (1):

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Lukin, J. (2013). Disability and Blackness. In L. J. Davis (Ed.), The Disability Studies Reader (4th ed.) (pp. 308315). New York, NY: Routledge. Mallett, R., Runswick-Cole, K. (2014) Approaching disability: critical issues and perspectives, London: Routledge McRuer, R. (2006). Crip Theory: Cultural signs of queerness and disability. New York, NY: New York University Press. McRuer, Robert and Michael Bérubé. Crip Theory: Cultural Signs of Queerness and Disability (Cultural Front), NYU Press, 2006. Miles, A. L. (2019) ‘“Strong Black Women”: African American Women with Disabilities, Intersecting Identities, and Inequality’, Gender & Society, 33(1), pp. 41–63. Millett-Gallant, A., Howie, E. (eds.) (2017) Disability and art history, London: Routledge Maroto, M., Pettinicchio, D. and Patterson, A. C. (2019) ‘Hierarchies of Categorical Disadvantage: Economic Insecurity at the Intersection of Disability, Gender, and Race’, Gender & Society, 33(1), pp. 64–93. Naples, N. A., Mauldin, L. and Dillaway, H. (2019) ‘From the Guest Editors: Gender, Disability, and Intersectionality’, Gender & Society, 33(1), pp. Nielsen, K. (2013). A Disability History of the United States. Beacon Press Oliver, M. Understanding Disability: From Theory to Practice. New York, Basigstoke, 1996


Olivia Pountney, O (2018). Untangling the knots of neuroqueer intersectionality. AUTSCAPE [online]. Available from http:// www.autscape.org/2018/programme/handouts/ Untangling%20the%20knots%20of%20 neuroqueer%20intersectionality.pdf

Thomas, C. Sociologies of Disability and Illness: contested ideas in disability studies and medical sociology, London, Palgrave, 2007.

Price, M. (2011). Mad at school: Rhetorics of mental disability and academic life. Ann Arbor: University of Michigan Press.

Waldschmidt, A., H. Berressem and M. Ingwersen, eds. Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies, Bielefeld, transcript, 2017.

Pothier, Dianne and Richard Devlin, eds. Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law (Law and Society Series), UBC Press, 2006.

Walker, N. (2015, May 2). Neuroqueer: An Introduction. Retrieved from https://neurocosmopolitanism. com/neuroqueer-an-introduction/

Pullin, G. (2011) Design Meets Disability, Massachusetts: MIT Press

Whalen, Z., (2016). Disability in comic books and graphic narratives. Springer.

Ronell, A. The Telephone Book: Technology, Schizophrenia, Electric Speech, University of Nebraska Press, 1989.

Withers, AJ. Disability Poilitics & Theory, Halifax, Fernwood, 2012.”

Rousso, H. (2013) Don’t Call Me Inspirational: A Disabled Feminist Talks Back, Philadelphia: Temple University Press

Yergeau, M. (2018).Authoring Autism: On Rhetoric and Neurological Queerness (Thought in the Act). London, England: Duke University Press.

Siebers, Tobin Anthony. Disability Theory (Corporealities: Discourses of Disability), University of Michigan Press, 2008.

Articles, Essays & Journals:

Snyder, Sharon, Brenda J. Brueggemann, and Rosemarie Garland-Thomson, eds. Disability Studies: Enabling the Humanities. Modern Language Association, 2002. Snyder, Sharon L. and David T. Mitchell. Cultural Locations of Disability, University of Chicago Press, 2006. Smith, Bonnie G., and Beth Hutchison, eds. Gendering Disability. Rutgers University Press, 2004.

#Autchat. (n.d.). Search results for: Intersectionality. Autchat. Retrieved from autchat.com/?s=intersectionality. Artiles, A. J. (2013). Untangling the racialization of disabilities: An intersectionality critique across disability models. W. E. B. Du Bois Institute for African and African American Research, 10(2), 329-347. Beale, F. (1970). ‘Double jeopardy: To be black and female. In T. C. Bambara (Ed.), The black woman: An anthology (pp. 109122). New York, NY: New American Library.

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Bell, C. (2010). ‘Is disability studies actually white disability studies?’ In L. J. Davis (Ed.), The Disability Studies Reader (3rd ed.) (pp. 374-382). New York, NY: Routledge. Bell, C.M. ed., (2011). Blackness and Disability: Critical examinations and cultural interventions (Vol. 21). LIT Verlag Münster. Ben-Moshe, L., & Magaña, S. (2014). An introduction to race, gender, and disability: Intersectionality, disability studies, and families of colour. Women, Gender, and Families of Color, 2(2), 105-114. (See p. 107 for a discussion of overrepresentation of students of colour in special education.) Ben-Moshe, L & Magaña, (2014) S ‘An Introduction to Race, Gender, and Disability: Intersectionality, Disability Studies, and Families of Color. Women, Gender, and Families of Color. Fall 2014, Vol. 2, No. 2 pp. 105–114. Board of Trustees of the University of Illinois.

Crow, M. (2017). Anarchism: in the Conversations of Neurodiversity. [online] The Anarchist Library. Available at: theanarchistlibrary.org/library/maxxcrow-anarchism-in-the-conversations-ofneurodiversity [Accessed 10 May 2019]. Disability and the Global South. Available via www.dgsjournal.org/ Do-IT. (n.d.). Hidden Impairments/ Learning Difficulties/Neurodiversity - Do-IT Profiler. [online] Available at: doitprofiler.com/resources/employer/ neurodiversity/ [Accessed 10 May 2019]. Dunhamn, J., Harris, J., Jarrett, S., Moore, L., Nishida, A., Price, M., Robinson, B. and Schalk, S., 2015. Developing and reflecting on a black disability studies pedagogy: Work from the National Black Disability Coalition. Disability Studies Quarterly, 35(2).dsq-sds.org/article/view/4637/3933

Blume, H. (1998, September). Neurodiversity. The Atlantic. Retrieved from www.theatlantic.com/magazine/ archive/1998/09/neurodiversity/305909/

Dunn, D. S., & Andrews, E. (2015) Personfirst and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist®, 70, 255-264. (journal)

Bowleg, L. (2008). When black + lesbian + woman ≠ black lesbian woman: The methodological challenges of qualitative and quantitative intersectionality research. Sex Roles: A Journal of Research, 59(5/6), 301-311.

Erevelles, N. & Minear, A. (2010). Unspeakable offenses: Untangling race and disability discourses of intersectionality. Journal of Literary & Cultural Disability Studies, 4(2), 127146. doi.org/10.3828/jlcds.2010.11

Cramer, E. P., & Plummer, S. B. (2009). People of colour with disabilities: Intersectionality as a framework for analyzing intimate partner violence in social, historical, and political contexts. Journal of Aggression, Maltreatment & Trauma, 18(2), 161-181.

Fabian, R. (2018). What is Invisible Illness? (+ How to Explain it to Others) - #1 Mental Health Blog - Talkspace. [online] #1 Mental Health Blog - Talkspace. Available at: www.talkspace.com/blog/ what-is-invisible-illness-how-to-explainit-to-others/ [Accessed 10 May 2019].

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Faragher, J. (2018). Why employers should be hiring with neurodiversity in mind. [online] People Management. Available at: www.peoplemanagement. co.uk/long-reads/articles/employers-hiringneurodiversity [Accessed 10 May 2019]. Goggin, G., 2009. Disability, media, and the politics of vulnerability. Asia Pacific Media Educator, 1(19), pp.1-13 Available via ro.uow. edu.au/cgi/viewcontent.cgi?referer=scholar. google.co.uk/scholar?start=40&q=ethnicity+d isability+art+studies&hl=en&as_sdt=0,5&h ttpsredir=1&article=1295&context=apme Hamraie, A., 2017. Designing collective access: A feminist disability theory of universal design. In Disability, Space, Architecture: A Reader (pp. 78297). Routledge. dsq-sds.org/article/ view/3871/3411:14022/datastreams/ CONTENT/content?download=true

Hulko, W. (2009). The time- and contextcontingent nature of intersectionality and interlocking oppressions. Affilia: Journal of Women and Social Work, 24(1), 44-55. Invisible Disability Project. (n.d.). Invisible Disability Project | Disrupting the Silence. [online] Available at: www. invisibledisabilityproject.org [Accessed 10 May 2019].James, P. and Kader, T., 2008. Practising Universal Instructional Design in visual art courses. Implementing Universal Design in Higher Education, p.87. www.cehd.umn.edu/passit/docs/ PASS-IT-BOOK.pdf#page=97 Jarman, M. and Kafer, A., 2014. Guest editors’ introduction: Growing disability studies: Politics of access, politics of collaboration. Disability Studies Quarterly, 34(2).dsq-sds.org/article/view/4286/3585

Hiari, T. (2018). Neurodiversity is Dead. Now What? - Mad In America. [online] Mad In America. Available at: www. madinamerica.com/2018/04/neurodiversitydead-now-what/ [Accessed 10 May 2019].

Jessica A. Kelley-Moore, Kenneth F. Ferraro, The Black/White Disability Gap: Persistent Inequality in Later Life?, The Journals of Gerontology: Series B, Volume 59, Issue 1, January 2004, Pages S34– S43, doi.org/10.1093/geronb/59.1.S34

Hirschmann, N. J, (2013). Disability, feminism, and intersectionality: A critical approach. Radical Philosophy Review, 16(2), 649-662. doi. org/10.5840/radphilrev201316247

Kelley-Moore, J.A. and Ferraro, K.F., 2004. The black/white disability gap: persistent inequality in later life?. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 59 (1), pp.S34-S43.

Holland, J. (2017). The hidden challenges of invisible disabilities. [online] BBC. com. Available at: www.bbc.com/capital/ story/20170605-the-hidden-challenges-ofinvisible-disabilities [Accessed 10 May 2019].

Kras, J. F. (2010). The ‘ransom notes’ affair: When the neurodiversity movement came of age. Disability Studies Quarterly, 30(1).

Hughes, J. (2016). #intersectionalND. [online] Discourse Analysis and Disability Rights. Available at: jessmfhughes. com/2016/01/04/intersectionalnd/ [Accessed 10 May 2019].

Lamm, N. (2015, Sept. 2). This is disability justice. The Body is Not an Apology. Retrieved from thebodyisnotanapology. com/magazine/this-is-disability-justice/.

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Onaiwu, M. G. (2015, Dec. 15). All of me: How do I know where blackness ends and neurodiversity begins? Just being me…Who needs normalcy anyway? Retrieved from whoneedsnormalcy.blogspot.com/2015/12/allof-me-how-do-i-know-where-blackness.html.

Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., Guiseppi, D., Durkin, M. S., Giarelli, E., Morrier, M. J., Nicholas, J. S., Pinto-Martin, J. A., Shattuck, P. T., Thomas, K. T., Yeargin-Allsopp, M., & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493-498.

Price, M. (2015). The body-mind problem and the possibilities of pain. Hypatia, 30(1), 268-284.

McCall, L. (2005). The complexity of intersectionality. Signs, 30(3), 1771–1800. Meekosha, H. and Shuttleworth, R., 2009. What’s so ‘critical’ about critical disability studies?. Australian Journal of Human Rights, 15 (1), pp.47-75. Mollow, A., 2004. Identity politics and disability studies: A critique of recent theory.

Puar, J. K. (2015). Bodies with new organs: Becoming trans, becoming disabled. Social Text, 33(3), 45-73. Purdie-Vaughns, V., & Eibach, R. P. (2008). Intersectional invisibility: The distinctive advantages and disadvantages of multiple subordinate-group identities. Sex Roles, 59, 377-391. Roberts, D. & Jesudason, S. (2013). Movement intersectionality: The case of race, gender, disability, and genetic technologies. Du Bois Review, 10(2), 313-328. Robertson, S. M. (2010). Neurodiversity, quality of life, and autistic adults: Shifting research and professional focuses on real-life challenges. Disability Studies Quarterly, 30(1).

Moore, L. F., Gray-Garcia, L. T., & Thrower, E. H. (2016). “Black & blue: Policing disability & poverty beyond occupy.” In P. Block, D. Kasnitz, A. Nishida, & N. Pollard (Eds.) Occupying Disability: Critical approaches to community, justice, and decolonizing disability (pp. 295-318). New York, NY: Springer.

Robertson, S. M. & Ne’eman, A. D. (2008). Autistic acceptance, the college campus, and technology: Growth of neurodiversity in society and academia. Disability Studies Quarterly, 28(4).

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crip: Disidentification with/in Disability Studies. Disability Studies Quarterly, 33(2). Shakespeare, T., (2013). Disability rights and wrongs revisited. Routledge. Shaw, L. R., Chan, F., & McMahon, B. T. (2012). Intersectionality and disability harassment: The interactive effects of disability, race, age, and gender. Rehabilitation Counseling Bulletin, 55(2), 82-91. Sinclair, J. (2010). Cultural commentary: Being autistic together. Disability Studies Quarterly 30(1). Smith, s.e. (2011, Mar. 8). Why I’m leaving feminism. This Ain’t Livin’. Retrieved from meloukhia.net/2011/03/why_im_leaving_feminism/. Soldatic, K. and Grech, S., 2014. Transnationalising disability studies: Rights, justice and impairment. Disability Studies Quarterly, 34(2). researchdirect.westernsydney.edu.au/islandora/ object/uws:36818/datastream/PDF/view Stienstra, D., 2002. The intersection of disability and race/ethnicity/official language/ religion. Unpublished paper, Canadian Centre on Disability Studies, University of Winnipeg, 8. pdfs.semanticscholar.org/102c/7a da8378ba97b6ddff5974e6200297e7eff7.pdf Tan, K. (2018). What else could ‘neurodiversity’ look like?. [online] Disability Arts Online. Available at: disabilityarts.online/magazine/opinion/elseneurodiversity-look-like/ [Accessed 10 May 2019]. Walker, N. (2015, May 7). Neuroqueer: An introduction, by Nick Walker. [Web log]. Retrieved from neuroqueer.blogspot.com/2015/05/ neuroqueer-introduction-by-nick-walker.html

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DIGITAL RESOURCES. Websites:

Description

ABLEize www.ableize.com/ disabled-arts

ABLEize was created with one simple aim, to make disability and special needs resources easy to find under one roof.

Centrepieces Mental Centrepieces exists to promote mental health recovery through the arts, providing opportunities for people to participate in art Health Arts Charity activities and to exhibit and sell their work. It also tries to promote centrepieces.org a better understanding of mental health to the wider public. Described and Captioned Media Programme dcmp.org/learn/366black-deaf-culturethrough-the-lens-ofblack-deaf-history

Black Deaf Culture Through the Lens of Black Deaf History: Black Deaf people have one of the most unique cultures in the world. The Black Deaf Community is largely shaped by two cultures and communities: Deaf and African-American. Some Black Deaf individuals view themselves as members of both communities. Since both communities are viewed by the larger, predominately hearing and White society as comprising a minority community, Black Deaf persons often experience double prejudice against them in terms of racial discrimination and communication barriers. Black Deaf women may experience three strikes of prejudice against them due to their race, Deafness, and sexist practices that prevail in our male dominated culture.

Disabled World www.disabled-world. com/disability/ types/invisible/

Disabled-World.Com is an independent Health and Disability news source that offers subject areas covering seniors and disability news, assistive device reviews, and articles on everything from helpful tips to disability sports articles.

D.I.V.A @ UAL www.instagram.com/ ual.disabled.voices

Disabled Intersectional Voices in the Arts - UALâ&#x20AC;&#x2122;s first Disabled-WOC(led) society fighting for inclusion & generating sites of creative resistance.

Dyspraxia & Life www.dyspraxia lifemagazine.co.uk

Dyspraxia & Life is a volunteer-led initiative, a platform for adults living with dyspraxia to share their stories and experiences with others. Born out of a desire to spread awareness of a condition that too few know about, our website aims to give an insight into what it can be like to live life with dyspraxia in adulthood.

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Equality for LGBT disabled people Out for Change www.stonewall.org. uk/events/equalitylgbt-disabledpeople-out-change

Regard is the national LGBT Disabled People's Organisation, established in 1989. Regard campaigns to raise awareness of LGBT issues within the disability community and of disability issues within the LGBT community; represents the interests of LGBT disabled people in areas such as social care; and works to combat social isolation by opening up 'the scene' to make it more accessible.

Invisible Disability Project (IDP) www.invisible disabilityproject.org/

Invisible Disability Project (IDP) is a social/cultural movement and an educational media project that consciously disrupts “invisibility” imposed upon unseen disabilities at the intersections of race, class, gender, and sexuality. We are devoted to building human connections and self-advocacy by dismantling shame and stigma. IDP effects change through public conversations and interactive online content with the goal of creating an informed, mutually supportive community.

Mouth and Foot Painting Artists www.mfpa.uk/

Welcome to the British web site of the Mouth and Foot Painting Artists. Formed in 1957, the MFPA partnership is part of an international self-help association of artists (AMFPA) who paint without the use of their hands. There are currently 33 British artists and almost 800 artists from over 80 countries worldwide. The MFPA is a partnership of disabled artists run by the artists themselves. This website details the formation of the association in 1957 and provides an insight into the artists, their paintings and examples of their inspirational work along with upcoming events the artists are involved in.

Music and the Deaf www.matd.org.uk

Music and the Deaf is the only UK charity entirely dedicated to providing access, education and opportunities in music for deaf children, young people and adults. Music and the Deaf aims to enrich the lives of those with hearing loss through the experience of music. Hearing loss shouldn’t be a barrier to enjoying and making music. It is proven that participation in music can play a crucial role in a person’s development: it promotes inclusivity, teaches young people how to work together, builds confidence, develops communications skills, and provides a vital outlet for self-expression. We are committed to enriching lives through music.

Ramp Your Voice! www.rampyourvoice. com

‘Fighting for Equality and Justice for people with all Abilities - A SelfAdvocacy & Empowerment Movement for People with Disabilities’.

Regard regard.org.uk

"Regard is a national organisation of lesbians, gay men, bisexuals, transgender and queer people (LGBTQ) who self-identify as disabled. We follow the Social Model of Disability. This is a way of thinking about disability that says it is society that needs to change by removing the barriers that deny us inclusion and equal rights.

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Queer Undefined www.queer undefined.com

A site detailing the many meanings of lgbtq+ labels and phrases. each definition you see here was submitted by an individual and may not align with your understanding or even with the other definitions displayed alongside it. the lgbtq+ community is multifaceted and ever-shifting, as is our vernacular. none of these definitions is official or final. this site is not all-encompassing. it is an attempt to decrease barriers to conversation and understanding by opening a space of learning and knowledge-sharing, where we can collaboratively make meaning as a community.

Shape Arts Shape Artshttps:// www.shapearts.org.uk

Shape Arts is a disability-led arts organisation which works to improve access to culture for disabled people by providing opportunities for disabled artists, training cultural institutions to be more open to disabled people, and through running participatory arts and development programmes.

Sideway Times www. sidewaystimesblog. wordpress.com

‘UK-based platform for conversations which in different ways link together struggles against ableism, white supremacy, capitalism and heteropatriarchy’.

The National Black Disability Coalition (NBDC) www.blackdisability. org/node?page=1

NBDC is the nation’s organization for all Black disabled people. Membership and partners includes Black disabled organizations, disabled people, parents, family members, faith based, non-profits, and academic and policy leaders.

Touch Tours National Gallery www.nationalgallery. org.uk/visiting/access/ blind-and-partiallysighted-visitors

Descriptive guided tours of temporary exhibitions and the collection throughout the Gallerie(s).

Wordgathering wordgathering.com/

Wordgathering: A Journal of Disability Poetry and Literature is a digital, Open Access, quarterly journal of disability poetry, literature, and the arts, with two interconnected purposes. First, we are dedicated to providing an accessible venue for featuring the work of emerging and well-known writers with disabilities (disabled writers). Second, we seek to make available and expand a searchable core of this work for interested readers (with and without disabilities) who are committed to disability poetry, literature, and the arts.

Podcasts:

Description

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Abnormally Funny People www.audioboom.com/ channel/abnormally funnypeople

The Abnormally Funny People Show is a monthly comedy podcast discussing all things disability, but with a big splash of comedy. Each month they serve up honest, useful and entertaining reviews of products, services, technology, travel and more.

Airing Pain www.painconcern. org.uk/airing-pain/

A monthly podcast that brings together people with chronic pain and top specialists to talk about the resources which can help.

Anxiety Shut-In Hour The Anxiety Shut-In Hour explores mental health in society, culture, media and the pantry. www.stitcher.com/ podcast/the-anxietyshutin-hour A programme that explores the limits and potential of the human mind. BBC All in the Mind www.bbc.co.uk/ programmes/b006qxx9/ episodes/player BBC Ouch: Disability Interviews and discussion with a personal and often humorous touch. With guest presenters plus Kate Monaghan and the Ouch blog team. Talk www.bbc.co.uk/ programmes/p02r6yqw/ episodes/downloads Beautiful Bodies player.fm/series/ beautiful-bodies

Hosts Willow Wallis and Alyssa Mazer talk bodies, positivity, and more! Join us in this inclusive, radical space to talk about marginalized bodies and explore the societal and cultural aspects related to body positivity.

Breaking Barriers player.fm/ series/breakingbarriers-2465280

A frank and intimate series of conversations between those who hold power in sought-after industries and the people struggling to find employment due to barriers - such as having a disability, holding refugee status or gender discrimination - in their chosen sector. Presented by social advocate and author Yassmin Abdel-Magied, this show is a collection of inspiring and powerful stories about sharing common ground and accessing pathways.

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Big Sam Presentz RAW player.fm/series/bigsam-presentz-raw

A podcast about life as a musician, father, husband, disabled veteran, and weight loss journey.

Carousel Radio www.podomatic.com/ podcasts/carouselradio

Carousel Radio is a show and a podcast that is planned and presented by our learning disabled DJs and radio presenters. Itâ&#x20AC;&#x2122;s one of the only places on the radio where you can hear spoken word exclusively by learning disabled artists. Produced in Brighton, UK by Carousel.

Diabetes Connections www.diabetesconnections.com

This podcast features prominent diabetes advocates, authors and speakers and includes personal stories of connection from people with diabetes and their friends and family.

A ten-part radio series Peter White presents a history of disability Disability: A New in the 18th and 19th centuries. Transcripts are available. History www.bbc.co.uk/ programmes/b021mdwt Disability After Dark www.andrewgurza. com/podcast

A podcast series that shines a bright light on issues about sex and disability, hosted by Andrew Gurza.

Disability Horizons www.soundcloud.com/ disability-horizons

Disability Horizons Co-founder Martyn Sibley will be interviewing famous and influential disabled people from the top 100 Power list to bring you a collection of entertaining and informative podcasts.

Disability Now - The Download www.podtail.com/ en/podcast/disabilitynow-the-download/

A podcast discussing topical issues for the disabled community with a panel of guests.

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Disability Visibility Project, www.disability visibilityproject. com/podcast-2/

A weekly podcast by the founder of Disability Visibility Project Alice Wong featuring conversations on politics, culture and media with disabled people. The show covers disability rights, social justice, and intersectionality. Disability Visibility is a production of the Disability Visibility Project ®, an online community dedicated to recording, amplifying, and sharing disability media and culture. Text transcripts for each episode are available.

DISrupt the Media www.soundcloud. com/disruptthemedia

A podcast discussing disability issues in the media.

Females in Fantasy player.fm/series/ females-in-fantasy

A podcast elevating the voices of women authors of science fiction and fantasy who write about kickass heroines.

First Peoples Disability Network (Australia) player fm/series/first-peoplesdisability-networkaustralias-mobcast

First Peoples Disability Network (Australia) is a national organisation of and for Australia’s First Peoples with disabilities, their families and communities. Its purpose is to promote respect for human rights, secure social justice, and empower First Peoples with disability to participate in Australian society on an equal basis with others. We are the custodians of the narratives of First Peoples with disability, their families and communities and we recognise this important responsibility. Because ours is an oral history, we continue this by recognising the value of our peoples’ narratives and collecting this data, which informs our work and the work of others.

In Sickness + Health www.insicknesspod. com/episodes

A podcast about chronic illness, disability, healthcare and mortality.

Invisible Not Broken www. invisiblenotbroken. com/home-chronicillness-podcast

A chronic illness podcast that explores the lives of those with chronic illness, invisible illness, and disability with snark and a good laugh.

NeurodiveCast www.mixcloud. com/dartifactory/

A podcast dedicated to neurodiversity, shifting perceptions, and changing the conversation about all forms of neurodivergence.

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Pigeon Hole Podcast www.whoamito stopit.com/ podcast-2/

A podcast that challenges stereotypes about disabled people. Made by from disability community, and centring disabled people as an audience, Pigeonhole interrogates the assumptions and biases we hold about disability and embraces all parts of people's identities. We uplift disability culture, celebrate identity, and break out of the narrow pigeonholes people attempt to stuff us in. All episodes have screen reader-accessible transcripts available.

Push Living Podcast www.pushliving. com/podcast-2/

A podcast about disability-inclusive design, travel and lifestyle. Indepth and personal insights into the most inspirational and informative guests from within the disability community and beyond.

Rachel's Story Treat me well player.fm/series/ rachels-story-treatme-well-2262333

Every month, we're releasing episodes of Rachel's Story, our audio drama based off of real experiences of people with a learning disability in hospital.

Represent player.fm/series/ series-2355683

Represent is a space for discussion, highlighting movies, TV, and online shows created by and/or about women, people of colour, people with disabilities, and those in the LGBTQ community. Join Aisha Harris as she dives deep into conversations with critics about the latest pop cultural news, and filmmakers about what they do and how they do it.

Ripple Effects: Travelers with Disabilities Abroad www.soundcloud. com/mobility internationalusa

A travel podcast by Mobility International USA (MIUSA), a disabilityled non-profit organisation based in Oregon, USA working to advance the rights of people with disabilities globally. By implementing innovative programs, they are building bridges to create a new era where people with disabilities will take their rightful place in the world community.

The #A11y Rules Podcast www. a11yrules.com/series/ a11y-rules-podcast/

A podcast about accessibility hosted by Nicolas Steenhout.

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The Art of Inclusion player.fm/series/theart-of-inclusion

Flipping the script on who we include, who we don’t, and how we can do better - in everything from gender, race, mental health and disability, through to the inclusion of LGBTQI+ and Indigenous communities. You'll hear the stories of politicians, journalists, athletes and executives, with reflection from experts and policymakers, who'll help you master The Art of Inclusion. Brought to you by Diversity Council Australia, or DCA.

The Codpast www.thecodpast.org/ category/podcasts

The Codpast is the one stop shop for adults with dyslexia. Here you will find the latest dyslexic developments, cutting edge assistive tech, time saving study skills and employment advice.

The Wheelin’ and Dealin’ www.cspn.us/category/ podcast-episodes www.podbean.com/ media/share/dirsuhz8-4e7ad7c

Welcome to the premiere episode of the Wheelin’ & Dealin’ podcast on The CSPN! In this first episode of the Wheelin’ & Dealin’ podcast, co-hosts Neal Carter & Vilissa Thompson introduce themselves, then engage in political discussion over a number of segments.

Woman's World player.fm/series/ womans-world

Radio Eye is a reading service for people who are blind or have other disabilities that make it difficult to read printed material. Woman's World is a weekly half-hour reading of women's magazine, including O, Real Simple, Southern Living, and more.

Writing Alchemy www.player.fm/series/ writing-alchemy

Writing Alchemy is storytelling that centres intersectional characters, including a fairy tale series that combines humour and magic with serious topics, and a tabletop role-playing series about the adventures of disabled and mentally diverse heroes.

Video

Description

Activity Alliance www.youtube.com/ channel/UC5lGWm 2IIaJq9xlDYczLsX A/videos

Activity Alliance brings organisations and deaf and disabled people together to make active lives possible. Collectively, they continue to challenge perceptions and change the reality about disability, inclusion and sport. They have a vision that disabled people are active for life.

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Annie Elainey www.youtube.com/ user/theannieelainey/ featured

A chronically ill, disabled, queer, Latinx, woman of colour. Videos with various topics that include their observations and experiences with body image, gender, race, LGBT+, disability, chronic illness, and mental health.

Blee TV www.youtube.com/ channel/UCbGbytnm FWu1lnH0w 7rC3BA/videos

Blee TV is a channel for entertainment and awareness of deaf people. Through different fun and educative videos, Blee TV aims to create awareness about sensory impairments and also provide useful video content.

Disability Sports Coach www.youtube.com/ channel/UCodEsu9 UfkjdhRx3uXtsqew /videos

Disability Sports Coach provide sport and physical activity for disabled people in London.

Hft Learning Disabilities www.youtube.com/ user/HftTV/videos

Videos with advice to improve the lives of disabled people.

ReelAbilitie www.youtube.com/ user/ReelAbilitiesFest/ featured

ReelAbilities: NY Disabilities Film Festival is the largest festival in the country dedicated to promoting awareness and appreciation of the lives, stories and artistic expressions of people with different abilities. Initiated in NY in 2007, the festival presents award-winning films by and about people with disabilities in multiple locations throughout each hosting city. Post-screening discussions and other engaging programs bring together the community to explore, discuss, embrace, and celebrate the diversity of our shared human experience.

A channel/vlog vlog about Robyn's life which includes Robyn Lambird www.youtube.com/user/ descriptions of a life with a disability/cerebral palsy. ATREXLIFE/videos

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SCOPE - Equality for Disabled People www.youtube.com/ channel/UCqaUv hrquPYwvIEx EMYu0oA

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here. We provide support, information and advice to more than a quarter of a million disabled people and their families every year. We raise awareness of the issues that matter. And with your support, we'll keep driving change across society until this country is great for everyone.

Sitting Pretty www.youtube.com/ channel/UCKhnl 8iyRPa1TNJrMOUN-Q

"Sitting Pretty" is a web series created by, Lolo, to show her life as a physically disabled person. For years I’ve been told to “tell my story” so finally I’ve decided not to just tell my story, but show my story. Most will assume the life of a physically disabled person HAS to be depressing, sad, or anything less than amazing. Anyone’s life can be all of those things, disabled or not, but we all have the choice to live our lives the way we want, and for me, "Sitting Pretty" is a reflection of that choice. I’m here to show the good parts of my life, the challenges unique to a disabled person and everything else in between.

The Easterseals Disability Film Challenge www.youtube.com /channel/UCd0PQ TVAsQpJCPOm4_ QYqqQ/videos

The Easterseals Disability Film Challenge gives filmmakers— with and without disabilities—the opportunity to collaborate to tell unique stories that showcase disability in its many forms.

An International organisation fighting for the rights of people with Validity Foundation www.youtube.com/user/ mental disabilities. Validity is a dynamic community of legal professionals and volunteers brought together by a desire to reverse injustice and mdachungary/videos segregation faced by people with mental disabilities worldwide. Their goal is to promote equality, inclusion and justice for all. Zach Anner www.youtube.com/ user/ZachAnner/videos

Comedian Zach Anner opens his life through a series of videoblogs., If at Birth You Don’t Succeed, with an admission: he botched his own birth, entering the world with cerebral palsy and an uncertain future. So how did a kid who almost failed kindergarten blossom into a viral internet sensation who’s hosted two travel shows, impressed Oprah, driven the Mars Rover, and inspired a John Mayer song?

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Key Organisations, Contacts, Services & Support Groups

Description

Able ARTS Wor www.ablearts work.org

The primary vision of Able ARTS Work is to provide lifelong learning, community service and vocational opportunities through the creative arts for people of all abilities and all ages in an environment of warmth, encouragement and inclusion. Able ARTS Work offers valid continuing education to further the education of board-certified music therapists and other creative art therapists.

Abelize www.ableize.com

UK disability and mobility directory and special needs website on the net. Here you will find 430 plus categories filled with providers offering everything from mobility and daily living aids through to support, disability sports, arts and education, care providers and healthcare products and services.

AbilityNet abilitynet.org.uk/

AbilityNet exists to change the lives of disabled people by helping them to use digital technology at work, at home or in education.

AcessAll - Disabled Theatre

Access All Areas makes urban, disruptive performance by learning disabled and autistic artists.

Accessible Arts www.aamedia.org.uk/

Facillitating Creative media learning projects in and around York since 1982.

Arts Disability Ireland Arts & Disability Ireland (ADI) is the national development adiarts.ie/ and resource organisation for arts and disability. Arts Marketing Association www.a-m-a.co.uk ActionSpace actionspace.org/

AMA helps people working in arts and cultural organisations reach more audiences with our training, events and resources. ActionSpace is a London based visual arts organisation. We support artists with learning disabilities and create innovative projects for people with learning disabilities to engage with the visual arts.

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Activity Alliance UK www.activityalliance. org.uk

Activity Alliance brings together their members, partners and disabled people together to make active lives possible. Collectively, they continue to challenge perceptions and change the reality of disability, inclusion and sport.

Autism and Race autismandrace.com

LYDIA X. Z. BROWN AND THE AUTISTIC WOMEN & NONBINARY NETWORK PROUDLY PRESENT ‘All the Weight of Our Dreams’. On Living Racialized Autism: Fund for community reparations for autistic people of color’s interdependence, survival, and empowerment.

ARTimeleia artimeleia.com/

‘ARTimeleia’ is an inclusive theater group consisted of disabled and non disabled actors based in Athens. Its primary aim is to explore the unlimited possibilities that the physical limits offer in an integrated theatrical environment. Artimeleia is a Greek word that means ‘whole and healthy’. For the group ‘artimeleia’ defines the wholeness and health through ‘art’.

BewegGrund, Switzerland www.disabilityarts international.org/ artists/profiles/ beweggrundswitzerland/

The association BewegGrund was founded in 1998 in order to promote inclusive dance. BewegGrund stands for equal rights, self-determination, equal opportunities and integration. The objective is self-evident togetherness of disabled and non-disabled people in cultural projects. Since it was founded, the association has regularly offered courses under the artistic direction of Susanne Schneider, conducts workshops with choreographers from Switzerland and abroad, is active in schools, and organises a biennial festival. Cie BewegGrund has produced a series of professional stage plays which have toured internationally.

Black Disabled Art History 101

Black Disabled Art History 101- Children’s Book covers Black painters, dancers, musicians, actors/actress with all types of disabilities from early 1900’s to today. Black Disabled Art History 101 has pictures of the artists and illustration drawings from Asian Robles and original poem-stories of Black disabled artists and a poem that started the whole concept of the book, Black Disabled Art History 101 all by Leroy F. Moore Jr.

BLIND WITH CAMERA www.blindwith camera.org/

Blind With Camera is an initiative of the Beyond Sight Foundation, a not-for-profit organization prompting the art of photography in people with visual impairment and building capacity around the “Disability” and “Non-Retinal” Art culture in India. It provides a platform for the visually impaired to share their “Inner Gallery” of images, their imagination and point-of-view of the visual world, giving them new voice about their unique experience, feelings, challenges and hopes.

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Bohnice Theatre Company www.bohnicka.eu/

An artistic leader from 1990 who has been working with psychiatric patients since 1990. - 1995-2008 built and led a studio of Performing and Non Perfoming Arts with a cafeteria called Citadela. Citadela studio involves theatre, dance, painting, pottery courses, workshops or festivities, where patients undergoing psychiatric treatment, volunteers, artists and general public work together.

Candoco www.candoco.co.uk/

Candoco produces excellent and profound experiences for audiences and participants that excite, challenge and broaden perceptions of art and ability, and place people and collaboration at the heart of our work.

Candoco Dance Company www. candoco.co.uk/

Candoco Dance Company is the contemporary dance company of disabled and non-disabled dancers. At the heart of our work are our national and international productions, created by world class choreographers for audiences to enjoy. Alongside these, through our Learning projects and activities we provide access to the highest quality of work for people participating in contemporary dance for pure enjoyment, or as part of a developing career.

Carousel www.carousel.org.uk

Carousel is an award-winning charity supporting learning disabled people to achieve their artistic ambitions.

Choice in Hackney www.choiceinhackney. org

CHOICE IN HACKNEY is one of the largest Disabled People's Organisations in Hackney. They assist disabled people to access services, challenge injustice, improve their employability prospects, live actively and participate in society.

CiM Dance Company www.disabilityarts international.org/ artists/profiles/cim -dance-company/

Disability Arts International is a website and regular digital newsletter developed and coordinated by the British Council, the UKâ&#x20AC;&#x2122;s international organisation for cultural relations and educational opportunities.

Creative Minds www.creativeminds project.org.uk /community/

A learning disability led discussion about quality, leadership, inclusion and collaboration in the Arts.

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Dançando com a Diferença en.dancainclusiva.com/

Dançando com a Diferença’s daily challenge is to change the image society has of the disabled and to carve out a space for human diversity within the professional universe of the contemporary arts. Students and performers/ dancers are helped throughout this formative process with support that is therapeutic, educational and above all of an aesthetic-artistic nature. They seek to encourage the productive and creative potential and professional development of inclusive groups. They believe in teamwork, the development of society towards enhancing abilities and in the non-discrimination of people with disabilities through inclusion in the most diverse social sectors.

Dash www.dasharts.org

Disability led visual arts organisation. We commission exciting new work by disabled visual artists; we run workshops; mentoring for artists and training.

Deafinitely Theatre www.deafinitelyt heatre.co.uk/

deafinitely theatre are the first deaf launched and deaf led professional theatre company in the uk producing quality bilingual theatre in british sign language and spoken english. Our vision - A world where theatre is accessible for all and deaf people are a valued part of the national theatre landscape.

DLF www.dlf.org.uk

DLF is a national charity providing impartial advice, information and training on independent living since 1969. It is a founder member of the Information Standard, a certification scheme for health and social care information.

Disability Arts Cymru www. disabilityartscymru. co.uk/

Disability Arts Cymru believes that Disabled and Deaf People have an exciting and valuable contribution to make to the arts in Wales. They are committed to working with individuals and organisations to celebrate the diversity of Disabled & Deaf People’s arts and culture and develop equality across all art forms.

Disability Arts Online We are an organisation led by disabled people, set up to advance disability disabilityarts.online/ arts and culture through the pages of our journal. Our raison d’être is to support disabled artists, as much as anything by getting the word out about the fantastic art being produced by artists within the sector. Disability Rights UK www. disabilityrightsuk.org

Disability Rights UK is led by people with diverse experiences of disability and health conditions, from different communities. They work with allies committed to equal participation for all.

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Disability Arts International www.disabilityarts international.org

Disability Arts International is a website and regular digital newsletter developed and coordinated by the British Council. Disability Arts International aims to promote the work of the exciting generation of excellent disabled artists, disabled-led companies and inclusive arts organisations. It also aims to share the ways arts organisations are increasing access to the arts for disabled people as audiences and visitors.

Disability Arts Online www. disabilityartsonline. org.uk

Disability Arts Online is an organisation led by disabled people, set up to advance disability arts and culture through the pages of their journal. They support disabled artists, as much as anything by getting the word out about the fantastic art being produced by artists within the sector.

Disability Intersectional Summit www.disability intersectionality summit.com/

Disability Intersectional Summit aims to create a dialogue on how our society must address systemic oppressions using an intersectional approach. The conference centres the experiences and knowledge of multiply marginalized disabled people such as queer disabled people of colour, undocumented transgender disabled people, or formerly incarcerated disabled people among others.

The Disability Visibility Project is an online community dedicated to Disability Visibility creating, sharing, and amplifying disability media and culture. Project www.disabilityvisibility project.com Disabled Artists Guild www. disabledartistsguild. com/

The DISABLED ARTISTS GUILD was established to help bring the art work of the disabled artists to the public’s eye for exhibitions and public art programs. As disabled artists we are trying to bring artistic, cultural and educational art to our community, town and country. We hope to accomplish this in an elegant, professional and accessible medium.

Disability Study Group www.britsoc.co.uk/ groups/study-groups/ disability-studygroup/about/

‘Disability’ occupies an ambiguous position within sociology. In some respects, it has been a consistent feature since early symbolic interactionist studies used accounts of impairment in social deviance studies. This approach has remained firmly embedded within the sub-discipline of medical sociology. Engagement with disability as a social relationship rather than individualistic concern remains marginal in broader sociology, although with the exception of scholars such as Shakespeare (2006) and Thomas (1999) who acknowledge that disability is a complex relation between personal and environmental/social factors. This is surprising given that the foundations of sociology are to understand how society works and provide insights in the relationships between people (institutions, places and non-humans).

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Disability Talent www.disability talent.org/

Disability Solutions works with employers to help strengthen their workforce through diversity and inclusion. We partner with top companies to deliver people and business driven outcomes by developing recruiting and engagement strategies for the disability community - delivering custom solutions in outreach, recruiting, talent management, retention and compliance.

Diverse City Diverse City is an award-winning organisation committed to equality and www.diversecity.org.uk/ diversity in the arts. Diversity is central to our name, our art, and our values. Flip - Disability Equality in the Arts www.flip.org.uk/

Supporting arts organisations around Scotland to embed disability equality within their working practices and supporting disabled artists to develop the highest outcomes.

Full Circle Arts www.fullcirclearts. co.uk/

Full circle arts aims to make the arts sector to be more accessible, not just by changing buildings physically, but by challenging people’s attitudes. We brought disability rights to the attention of cultural leaders.

Fittings Multimedia Arts www.disability artsinternational.org/ artists/profiles/ fittings-multimediaarts/

Fittings Multimedia Arts is one of the artists and companies who celebrates the fusion of disabled performers with the gloriously extravagant world of vogue ball culture.

GigBuddies www.gigbuddies. org.uk/

Sussex-based project that matches adults who have a learning disability to a volunteer who has similar interests, to go to events together.

Graeae www.graeae.org

Graeae is a force for change in world-class theatre, boldly placing D/ deaf and disabled actors centre stage and challenging preconceptions.

Heart N Soul www.heartnsoul.co.uk

Heart n Soul is an award-winning creative arts company and charity. They believe in the power and talents of people with learning disabilities, providing opportunities for people to discover, develop and share this power and talent as widely as possible.

Inclusion London www.inclusion london.org.uk

Inclusion London is a London-wide Deaf and disabled people’s organisation promoting equality for the capitals 1.4 million Deaf and disabled people and providing capacity building support to London’s Deaf and disabled people’s organisations.

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International Disability Alliance www.international disabilityalliance.org

The International Disability Alliance (IDA) is an alliance of eight global and six regional organisation of disabled people that represents the estimated one billion people worldwide living with disabilities. They advocate at the United Nations for a more inclusive global environment for disabled people and organisations supporting disabled people.

International Guild of Disabled Artists & Performers www.facebook. com/igodap/

New Zealand-based collective of disabled artists and performers. The Guild offers networking opportunities for individuals and organisations who are involved in or supportive of disability art and performance.

Krip-hop Nation kriphopnation.com/

Krip-Hop Nationâ&#x20AC;&#x2122;s Mission is to educate the music, media industries and general public about the talents, history, rights and marketability of HipHop artists and other musicians with disabilities. Krip-Hop Nationâ&#x20AC;&#x2122;s main objective is to get the musical talents of hip-hop artists with disabilities into the hands of media outlets, educators, and hip-hop, disabled and race scholars, youth, journalists and hip-hop conference coordinators.

Livability www.livability.org.uk/

Livability is a charity that connects people with their communities. They tackle social isolation and the barriers that can cause this in the lives of disabled and vulnerable people. Through a range of disability, education, training and community services, they promote inclusion and wellbeing for all.

Mencap www.mencap.org.uk/

A charity that offers support to people living with learning disabilities, in areas of their life where they might need support.

Mind The Gap www.mind-thegap.org.uk/

Bold, cutting-edge, world-class theatre. Working alongside artists with learning-disabilities to create exciting, surprising and challenging experiences for regional, national and international audiences.

My Diversability www.mydiversability. com

Diversability is a social enterprise rebranding disability through the power of community. They foster community online and offline to connect, showcase, and empower people of all abilities. They connect the disability community, engage allies, and celebrate disability pride and empowerment. Working to address social isolation and the loneliness epidemic.

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Not Dead Yet UK Not Dead Yet UK (NDYUK) is a network of disabled people in the www.notdeadyetuk.org UK who have joined a growing international alliance of disabled people, who oppose the legalised killing of disabled people. All those involved are disabled people, including people with physical and sensory impairments, learning difficulties, and mental health conditions. NWN Photography www.disabilityarts international.org/ artists/profiles/ nwn-photography/

The first bank of images made by photographers with disabilities is reality (in Beta version). A meeting place between companies, organizations, graphic designers … and all the photographers with disabilities who wish to be on the project are welcome.

Oska Bright Film Festival www. oskabright.org/

The world’s leading Learning Disability film festival taking place on the 23rd-26th October in Hove, UK.

Platform-K platform-k.be/

Platform-K makes professional dance productions with dancers with and without limitation. We give dancers with a disability a contemporary dance education. With this we fill a blind spot in the Flemish stage landscape.

Per.Art www.disabilityarts international.org/ artists/profiles/per-art/

Per.Art is an independent organization active in the field of contemporary performing arts in Serbia. Since 1999, the ‘Art and Inclusion’ program of Per.Art organization gathers people with learning disabilities, artists (theatre, dance and visual arts), special educators, representatives of cultural institutions, philosophers, architects and students.

People Dancing is the UK development organisation and membership body for People Dancing www.communitydance. those involved in creating opportunities for people to experience and participate in dance. Our membership reaches more than 4,500 dance professionals worldwide. org.uk/ RespectAbility RESPECTABILITY.org

RespectAbility, a national nonprofit working to fight stigmas and advance opportunities for people with disabilities, will be celebrating Pride Month by highlighting the intersection of disability and LGBTQ daily on its social media channels. RespectAbility has benefited from the work of staff and Fellows who identify as a member of both the disability and LGBTQ communities.

Scope UK www.scope.org.uk

Scope UK is a disability equality charity in England and Wales that provides practical information and emotional support when it's most needed alongside campaigning to create a more inclusive society.

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Shadowlight Artists shadowlightartists. org.uk/

The Shadowlight Artists are a group of seven artists with learning disabilities based in Oxfordshire, working in a variety of media but with a shared interest in digital forms. Their work is personal, moving, and at times challenging. The group formed in 2009 as a result of Film Oxford’s Flash Frame project. The aim of that project had been to identify individuals with leaning disabilities who showed artistic potential and ambition to take their work to a broader audience. Since then, the group have gone on to produce work that has reached audiences within the UK and beyond, spanning media from painting and sculptural installation to film and theatrical production.

Shape Arts www.shapearts.org.uk

Shape Arts is a disability-led arts organisation which works to improve access to culture for disabled people by providing opportunities for disabled artists, training cultural institutions to be more open to disabled people, and through running participatory arts and development programmes.

Sisters of Frida www.sisofrida.org

Bringing disabled women together, mobilising and sharing through lived experiences Sisters of Frida CIC is an experimental collective seeking to build a different network of disabled women. We are building a sisterhood, a circle of disabled women to discuss, share experiences and explore intersectional possibilities. Sisters of Frida exists to tackle the barriers and multiple discrimination faced by disabled women, and to make sure our voices are heard. Sisters of Frida CIC works with Disabled People’s Organisations and Women’s Organisations on disability and women’s rights. Sisters of Frida were awarded a Catalyst Grant by the RSA in 2016 to run a series of workshops which focused on neglected conversations about disabled women and sexuality. Read more in the blog written by founder Eleanor Lisne.

Stopgap Dance Company www. stopgapdance.com/

Stopgap Dance Company create exhilarating dance productions for national and international touring. We employ disabled and nondisabled artists who find innovative ways to collaborate. Stopgap value a pioneering spirit and are committed to making discoveries about integrating disabled and non-disabled people through dance.

Tangled Art + Disability tangledarts.org/

Tangled Art + Disability is a registered charitable organisation dedicated to enhancing opportunities for artists with disabilities to contribute to the cultural fabric of our society.

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THE.AM.A. (Theatre THE.AM.A was established in 2010 as a professional integrated theatre group, which aspires to establish the first Greek Higher for People with School of Drama for people with all disabilities. Disabilities) www.disabilityarts international.org/ artists/profiles/the-ama-theatre-forpeople-with-disabilities/ The Disability & Feminism Reading Group disabilityand feminismrg@gmail.com

The theme of the 2020 bi-annual conference of the FWSA (Feminist and Womenâ&#x20AC;&#x2122;s Studies Association*) is feminism and disability. The current reading list is grounded in the social sciences and humanities.

The Invisible Disabilities Association (IDA) invisibledisabilities.org/

The Invisible Disabilities Association (IDA) is a nonprofit organising supporting and demystifying the invisible nature of illness and pain may lead to disbelief about that illness or pain by those surrounding the person who lives daily with invisible disabilities. Their mission is to encourage, educate and connect people and organisations touched by illness, pain and disability around the globe.

The Neurodiversity Reading Group neurodiversityrg. wixsite.com/site

The Neurodiversity RG is intended for all academics, students, and non-academics and community members who are interested in reading and discussing academic texts on neurodiversity.

University of Atypical University of Atypical is a disabled-led arts charity, taking an empowermentbased approach towards supporting disabled and D/deaf peopleâ&#x20AC;&#x2122;s involvement www.universityof in the arts. The organisation specialises in developing and promoting the work atypical.org of disabled and D/deaf artists and in reaching disabled and D/deaf audiences. Un-Label un-label.eu/en/

The interdisciplinary, mixed-abled performing arts company UnLabel stands for artistic innovation and diversity. It brings together artists from all over Europe. Our performances featuring emerging artists with and without disabilities set new standards.

UNLIMITED www.weareunlimited. org.uk/

Unlimited is an art commissioning programme that enables new work by disabled artists to reach the UK and international audiences.

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Validity Foundation www.validity.ngo

Validity is an international non-governmental human rights organisations that use legal strategies to promote, protect and defend the human rights of people with mental impairments worldwide.

VSA Arts education. kennedy-center.org/ education/vsa/

VSA, the international organization on arts and disability, was founded more than 35 years ago by Ambassador Jean Kennedy Smith to provide arts and education opportunities for people with disabilities and increase access to the arts for all.

World Enabled www.worldenabled. org/

World ENABLED is an educational non-profit organisation that promotes the rights and dignities of persons with disabilities. Their fieldwork and research initiatives further an inclusive human and civil rights approach to disability programs and policies. In collaboration with international partners, they work to build inclusive societies where disabled people can develop their talents, skills and abilities and reach their full potential.

Faith and Disability

Description

Podcast www.bbc.co.uk/ programmes/b00tg1c9

Ernie Rea is joined by a Christian, a Druid and a Hindu who discuss the understanding of disability from their faith perspective.

Faith and Disability faithanddisability.org/

The mission of the Collaborative on Faith and Disability is to support people with disabilities, their families, and those who support them by providing national and international leadership in the areas of research, education, service, and dissemination related to disability, religion, and inclusive supports.

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Faith and Disability Project includemetoo.org.uk/ faith-and-disability/

Include Me TOO (IM2) is a United Kingdom based charity supporting disabled children, young people and their families from diverse range of backgrounds, participation, equality, inclusion, rights and aspirations nationally and internationally. We do this by working together with families, supporting parents and carers to become Champions; support Disabled Children, Young People and their Siblings to become Ambassadors and Role Models

Journal of disability and religion www.tandfonline. com/loi/wrdh21

The Journal of Disability & Religion combines academic papers and reflective articles representing religious, spiritual, social, cultural, and scientific points of view. They include research, pastoral reflections, theology, religious studies as well as stories about personal journeys. It addresses the critical religious, moral, and spiritual issues raised by people working in the field.

Twitter

Description

@DiorVargas

Queer Latina Feminist Mental Health Activist. Creator: People of Color & Mental Illness Photo Project.

@DisabledLatinx

National coalition of and for disabled Latinxs.

@DisRightsUK

Disabled people leading change, working for equal participation for all in the UK.

@carouselartuk

Award-winning learning disability-led arts organisation.

@HTCSolidarity

Collective of Black Deaf/Disabled organizers, community builders, dreamers, lovers striving for radical inclusion & collective liberation.

@Imani_Barbarin

Crutches THEE Spice, Bllack girl magic + disabled pride & Creator #DisTheOscars + #AbledsAreWeird#ThingsDisabledPeopleKnow.

@mama_cax, mamacax.com

Cancer survivor | Blogger | Disability & body positive Advocate.

@mencap_charity

The Royal Mencap Society is a charity based in the UK that works with people with a learning disability.

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@phineasfrogg

Finn Gardiner, #ActuallyAutistic researcher/advocate with @autselfadvocacy & @LurieInstitute.

@SeeMiaRoll

Consultant - Activist - Writer - Photographer - Transracial Adoptee, Founder of @wmdisability(She/Her).

@SinsInvalid

Conceived & led by disabled people of colour, we make cutting-edge work challenging normative paradigms of sexy, offering instead a radical vision of beauty.

@StayUpLateUK

Charity calling for active social lives and proper choice for people with learning disabilities - home of @gigbuddies, a Nesta New Radical #NoBedTimes.

@Vilissa Thompson, www.patreon.com/ RampYourVoice

#DisabilityTooWhite Creator, Founder of @ RampYourVoice, #Disability_Rights #Consultant Social Worker & Writer.

@weareunltd, weareunlimited.org.uk

Commissioning exceptional work by exceptional disabled artists. Delivered by @shapearts & @artsadm.

Hashtags

Descriptions

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#AbleismExists.

Along with creating #TheBarriersWeFace, Evans also created the hashtag #AbleismExists with a similar purpose. The hashtag allows people in the community to talk about the discrimination they face, connecting with others who have similar experiences and educating people without disabilities at the same time. Evans told The Huffington Post that he created the hashtag in response to his activist friends constantly asserting that ableism does not exist, devaluing his personal experiences with bias. When you look at the hashtag, it shows that ableism certainly does exist.

#ActuallyAutistic

Allows autistic people to take back their stories, showing that they should be given the respect to represent their own needs and narratives independently. Autistic social media users use the hashtag to share their experiences with bias, triumph or struggle, and also call out media and other advocates when they try to control the narrative.

#BlackAbleism

A hashtag conversation critiquing the actions and behaviours of members in the black community in the (historical) treatment of their disabled Black relatives.

#CripLit

A series of Twitter chats for disabled writers.

#CriptheVote

A nonpartisan online movement encouraging the political participation of disabled people led by Alice Wong, Andrew Pulrang and Gregg Beratan.

#Cripping TheMighty

A hashtag conversation critiquing the media’s portrayal of people with disabilities. ‘Cripping’ insists that the system of compulsory able-bodiedness is not and should not be the norm; Cripping also imagines bodies and desires that fit beyond that system to reconfigure and re-imagine the media landscape.

#CripTheVote

A hashtag conversation raising awareness of disability issues in the 2017 General Election.

#CripTheory

A hashtag conversation raising awareness of crip theory, disabled identity and the accommodating desires of the queer/disability movement.

#ChronicSex

Let’s talk about sex -- and disability. It’s an intersection that’s largely ignored, with assumptions that people with disabilities can’t have fulfilling or successful sex lives. The weekly Twitter chat #ChronicSex looks to give people with disabilities the space to talk about chronic diagnoses, disability and sexuality. Users also share tips and tricks from articles and resources around the web that make sex with a diagnosis or disability more pleasurable.

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#DeafTalent

When people with disabilities are represented in entertainment or media, their stories are often filtered through an able-bodied perspective. For example, actors without disabilities commonly portray characters with disabilities, while literature about disability is often written by authors without disabilities. Creatives with disabilities have difficulty finding work and pursuing their passions due to limited expectations and lack of opportunity. Created by actors, artists and musicians in the Deaf community, the hashtag #DeafTalent seeks to highlight the work of creatives with disabilities while also creating a supportive community online.

#Disability TooWhite

a hashtag created by Vilissa Thompson on Twitter to bring attention to the lack of racial diversity in disability representation. #DisabilityTooWhite does not intend to erase the struggles and the ableism that white disabled folks experience, it is merely addressing the issue that the intersection of race and disability is not often addressed and not often represented.

#DisaBodyPosi

The body positive movement has led a massive effort to better reflect diversity in media representation. But conversations about body positivity often begin and end with body size. People with disabilities are just one of several groups frequently excluded from the narrative. #DisaBodyPosi -- short for “Disability Body Positive” -- allows social media users to post photos of themselves to empower their community. Disability activist Isa Jennie created the hashtag to fight “ableist beauty standards” and show that “all bodies are worthy of being loved and appreciated.”

#InvisibleIllness

Not all disabilities manifest physically. People with invisible illnesses face unique challenges to even be recognized as part of the disability rights community or have their disabilities taken seriously. The hashtag #InvisibleIllness tackles what it’s like to live with a disability or condition that is not immediately apparent to others through visual clues. The tag includes everything from funny quips about annoying interactions to practical information for those living with a variety of invisible diagnoses.

#PurpleLightUp

For tweets about #PurpleLightUp 2019 a global celebration of the economic contribution of disabled people, follow us - For tweets about #PurpleLightUp 2019 a global celebration of the economic contribution of disabled people.

#ShowMe YourPump

Being diagnosed with diabetes sometimes means living with a pump to help regulate insulin levels. Instead of accepting the expectation that people with diabetes should hide their pumps, the hashtag #ShowMeYourPump encourages them to show off the devices through empowering selfies. Not only does this body positive hashtag creates a sense of community, but it also helps encourage people living with diabetes to appreciate the devices that ensure their health.

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#Spoonie

This identity-turned-hashtag is a reference to Spoon Theory, a common way people with disabilities explain their energy levels to people without disabilities. The theory suggests that people with disabilities and health complications are allotted a certain amount of energy -- or spoons -- each day, while “healthy” people often have unlimited spoons. Those with limited spoons need to decide strategically when to use them to make it through the day, which can be complicated and annoying. A “spoonie,” then, is someone who needs to navigate these decisions regularly. And they’re connecting via the #Spoonie hashtag to share their stories and frustrations.

#ServiceDog

We all know we’re not allowed to pet service dogs, even though they’re undoubtedly cute. But there’s no shame in exchanging adorable photos of service dogs via social media. The hashtag #ServiceDog on Instagram is filled with photos of service dogs showing off just how cute -- and reliable -- they are both on and off work. Take a look at the furry friends -- but always remember to respect a working dog in public.

#TheBarriers WeFace

People with disabilities face a lot of challenges when navigating a world that isn’t designed with them in mind. Aside from physical barriers, people with disabilities also encounter stigma and bias from a largely unaccepting society.

#WheelchairLife

Using a wheelchair means navigating inaccessible places as well as people’s limited expectations -- but it also comes with having a relatively normal life. Wheelchair users are connecting through the hashtag #WheelchairLife to show that fact, simply by documenting their everyday lives. As such, wheelchair users are capturing how complete their lives are, challenging the notion that using a wheelchair somehow makes life unfulfilling.

#WeShallNot BeRemoved

As a response and call to action the ‘#WeShallNotBeRemoved’ UK Disability Arts Alliance was formed by UK disabled artists and cultural leaders seeking recognition of cuts, a hit on personal income, access to vital facilities, and generally have a reduced quality of life for disabled artists. It began with an Open Letter to the Secretary of State for Culture to support disabled artists during and after COVID-19.

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“RACISM HAS REALLY DESTROYED BLACK DISABLED MOVEMENTS.” - Leroy F Moore Jr.

336 // DISABLED PEOPLE: THE VOICE OF MANY.


Public Statement in the Context of the Black Lives Matter Movement and COVID-19 This journal was published during the 2020 COVID-19 pandemic and the Black Lives Matter Movement. Shades of Noir (SoN) stands with the global Black Lives Matter movement (including Black Lives Matter UK) to continue to do the ‘work’ to end systemic racist practices, systems, behaviours and ‘fight for freedom, liberation and justice’ for Black people, inclusive of the QTIBIPOC and all intersectional communities globally. Here too, we support all individuals impacted by the ongoing pandemic and endeavour to continue to mobilise as a community, building upon the work of our predecessors. We welcome contributors to be proactive in allyship, promote coalition and express ‘non-optical’ allyship. United we stand and Shades of Noir continues to be committed to continuing our ‘work’. We Salute You!

DISABLED PEOPLE: THE VOICE OF MANY. // 337


THE

VOICE WITH THANKS TO OUR SUPPORTER:

OF THE MANY.

shadesofnoir.org.uk

We salute you! © Shades Of Noir 2020

338 // DISABLED PEOPLE: THE VOICE OF MANY.


DISABLED

PEOPLE: DISABLED PEOPLE: THE VOICE OF MANY. // 339

Profile for Shades Of Noir

Disabled People: The Voice of Many  

You can find an accessible version of this publication at (https://shadesofnoir.org.uk/journals/disabled-people-the-voice-of-the-many) Disa...

Disabled People: The Voice of Many  

You can find an accessible version of this publication at (https://shadesofnoir.org.uk/journals/disabled-people-the-voice-of-the-many) Disa...

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