Maia Pace-Jackson - Dissertation

A pre-pandemic exploration into the manufacturing of disablism and review on the effect of perpetuated health inequalities.

“Come the glorious day if it ever came where all the barriers went, y'know.

We'd just be people with impairments. We wouldn't be disabled people any more.” - Laurence Clarke (comedian and writer)

Maia Clementina Pace Jackson.

BA(Hons) Fine Art Photography The Glasgow School of Art. Supervisor: Elizabeth Hodson.

Word count: 7737

Acknowledgements

When I was fourteen, I was told to not choose art as a GCSE subject. The head of art said I would not be able to “keep to the curriculum” and advised me to follow another path. It was around this time that I left school after only three years of secondary education due to poor mental and physical health. Following my departure, I spent twenty-three months in an inpatient facility. When I was discharged, I was lost, and I felt certain that I would not be able to achieve my aspirations or fulfil my potential. With only one GCSE, I worried about my future. As I pored over the leaflet for courses at my local college, I searched desperately within myself, trying figure out what I was good at, what I enjoyed, and what I wanted to study. I decided I wanted to apply for the Photography course. I was sure I didn’t have enough or the right qualifications to be accepted, but the content fascinated me and made me feel passionate about education for the first time in my life.

Thomas Keating saw something in me that no one ever had before. I was just an incredibly anxious girl with no self-esteem, learning how to integrate back into society, dressed in a suit and with a shaky portfolio that resembled a scrap book, without the necessary qualifications, but a clear tenacious determination to make art and to make something of my life. Thomas Keating gave me a place on the course that changed my life forever and I can never thank him enough for that. Next, I would like to thank formally Edd Brereton for the unwavering support he has shown for me over these years. I recognise that his unique philosophical outlook has changed the way I approach life and Art forever, I would not be the person I am today without you Edd, thank you.

Finally, I would like to dedicate and commemorate this dissertation to the memory of Sasha Forster. Thank you for believing in me Older Star.

Synopsis Countless reports have been commissioned regarding the catastrophic impact unfair legislation has had on the most vulnerable in society. To this day there is still a persistent segregation and disregard of disabled people's human rights. This is having a lethal effect, and on a mass scale. We are living in an era of freely and readily available information.

When those in power have the ability and capacity to change this unjust landscape but do not, it forces disability charities to subsidise and implement life-saving critical care where our leaders are failing.

In modern-day Britain, a postcode can define a person's life span and their quality of life. Up and down the UK, the attainment gap is growing. Already stretched public services scramble to try and meet the growing needs of increasingly desperate people. We are living through an entirely unfair and preventable time. It is possible to stop perpetuating health inequalities and thereby allowing the most vulnerable to have the best chance at the most basic of human rights. We could do it in a generation. Governments who choose inaction are voting to perpetuate social injustice. All of us can live fulfilling lives regardless and in celebration of our differences, so how are we going to go about it?

List of illustrations: .................................................................................................................... 1 Preface........................................................................................................................................ 2 Introduction ................................................................................................................................ 3 Historical changes to disability rights and legislation following the birth of the National Health Service. ....................................................................................................................... 4 Chapter 1 .................................................................................................................................... 8 The Medical Model .............................................................................................................. 11 The Social Model ................................................................................................................. 13 Chapter 2 .................................................................................................................................. 17 Education ......................................................................................................................... 24 Employment and Standard of Living ............................................................................... 24 Mental health care ............................................................................................................ 26 Chapter 3 .................................................................................................................................. 28 First: Building a better tomorrow, focusing on child development. .................................... 28 Second: The importance of fairness. .................................................................................... 34 Third: Creating equal opportunities. .................................................................................... 37 Fourth: Representation gives way to normalisation............................................................. 40 Conclusion ............................................................................................................................... 42 Appendix A: ............................................................................................................................. 44 Appendix B: additional reading. .............................................................................................. 46 Bibliography. ........................................................................................................................... 47

1 List of illustrations:

Page 21 Fig. 1. Peniel Foundation, ‘This model says that people are disabled by barriers in society and not by having the impairment itself. The social model helps us recognize barriers that make life difficult for people with disabilities. Removing this barriers created equality and offers people with disabilities more independence, choice and control. Have you ever heard about the social model of disabilities.’ (Screenshot, Instagram, @penielfoundation, 3 November 2020) <https://www.instagram.com/p/CHIFlVylhRN/ > [Accessed 12 January 2021]

Page 19 Fig. 2. Michael Marmot, Social Justice and Health Equity: A talk with Sir Michael Marmot, (Screenshot of online video, YouTube, 16 December 2018) <https://www.youtube.com/watch?v=UZlYnE3OhRE&t=639s> [Accessed 30 November 2020]

2 Preface

I am a young, mixed-race, gay woman living with multiple chronic and disabling conditions.

I was diagnosed with my disabilities fourteen years ago and through this research I have begun to recognise the symptoms of social abandonment in myself. I have witnessed the impact poorly informed, and unfair government health and social care legislation has had on patient care. I have seen the effects of budget cuts to critical services, escalating the national crisis of extensive waiting lists. The persistent starvation of resources and funding to emergency and essential services has led to substantial delay causing magnitudes of distress.

The following research has helped me come to terms with the notion that many of my negative experiences with integrating into society, higher education and the world of work; have originated from a presentation and acceptance of false limitations. Generally, these falsities are borne from a regressive ignorance towards addressing the historical and systematic stigma that accompanies disability. My personal feelings of powerlessness and frustration with these systematic failings have left me compelled to write this.

3

Introduction

“We cannot, and must not, allow the next 20 years to repeat the past.” David Isaac, Chair of the Equality and Human Rights Commission1.

What does it mean to be disabled in Britain today? Under the Equality Act set out in 2010 the government defined and categorised disabled people as having either: “a physical or mental impairment, and the impairment has a substantial and long-term adverse effect on person’s ability to carry out normal day-to-day activities.”2 In 2018/19, 21% of the population3 declared disability. During that time, one in three disabled people stated that they felt there was a lot of prejudice against them; in contrast to this, only one in five non-disabled people agreed4. This phenomenon is called the perception gap. Due to rapidly changing definitions, I am going to begin by outlining some of the critical terms used regularly throughout this essay.

Disablism/ Ableism: this is discrimination, prejudice or stigma against disabled people. These two terms can be used similarly and interchangeably; however, there is a conflict when deciphering the language that leads to the implications drawn from using the word ‘able’. It is a common misconception that disability has something in common with ability, which it does not. Disablism is discrimination against disabled people. In comparison, ableism is not

1 Equality and Human Rights Commission, Being disabled in Britain a journey less equal, (2017) <https://www.equalityhumanrights.com/sites/default/files/being-disabled-in-britain.pdf> [Accessed 12 November 2020] (pp. 5-9).

2 GOV.UK, Definition of disability under the Equality Act 2010. [n.d.] <https://www.gov.uk/definition-ofdisability-under-equality-act-2010> [Accessed 12 November 2020] (para. 1 of 4).

3 GOV.UK, Department for Work and Pensions, Family Resource Survey 2018/19. [n.d.] <https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/874507/fami ly-resources-survey-2018-19.pdf> [Accessed 12 November 2020] (pp. 1-7).

4 Simon Dixon, Ceri Smith and Anel Touchet, The Disability Perception Gap: Policy report. (2018) <https://www.scope.org.uk/scope/media/files/campaigns/disability-perception-gap-report.pdf> [Accessed 12 November 2020] (pp. 2-5).

4 commonly used. However, it does have a place when it refers to furthering and promoting the agenda of non-disabled people at the detriment or discrimination of disabled people. 5

Psycho-emotional disablism: This phrase is utilised when the effects of able-bodied bias, discrimination, prejudice or stigma affect a disabled individual’s psychological or emotional well-being.6

Historical changes to disability rights and legislation following the birth of the National Health Service.

In 1970 the local authority Social Services Act was created, leading to social service committees being established in all local authorities7 (England and Wales only8) to provide specific assistances for social care and residential accommodation9. That same year Labour MP Alf Morris put into place the ground-breaking ‘Chronically sick and disabled persons Act (CSDP)’ which was first of its kind law, that gave disabled people human rights10. This act made accommodation for disabled people separate from the elderly11. It put in place guidance aimed at encouraging local authorities and committees to include people with lived experience of disability, raising inclusivity and representation12. The act included the

5

Scope, Disablism and ableism, [n.d.] < https://www.scope.org.uk/about-us/disablism/> [Accessed 12 November 2020] 6 Lexico Dictionaries, Definition: Psycho-Emotional, [n.d.] <https://www.lexico.com/definition/psychoemotional> [Accessed 12 November 2020] 7 Local Authority Social Services Act 1970 (c. 42) [Online] <https://www.legislation.gov.uk/ukpga/1970/42/enacted?timeline=false> [Accessed 30 November 2020] (pp. 11).

8 Local Authority Social Services Act 1970 [Accessed 30 November 2020] (pp. 13 (5) -8).

9 Local Authority Social Services Act 1970 [Accessed 30 November 2020] (pp. 7 (2a) -5).

10 Chronically Sick and Disabled Persons Act 1970 (c. 44) [Online] <https://www.legislation.gov.uk/ukpga/1970/44/enacted?timeline=false> [Accessed 30 November 2020] (pp. 11).

11 Chronically Sick and Disabled Persons Act 1970 (c. 44) [Accessed 30 November 2020] (pp. 17-6).

12 Chronically Sick and Disabled Persons Act 1970 (c. 44) [Accessed 30 November 2020] (pp. 15 - 5/6).

5 introduction of disability badges for cars, although it did not include parking or access as part of the legislation13. Mobility scooters (referred to as: invalid carriages in the original law which is now considered offensive language) were now legally allowed to be used on roads, footpaths and pavements14. It gave councils the duty of providing specialist education for children who were; blind, deaf, autistic and dyslexic15. The law legislated equal access to recreational and educational facilities for disabled people16. Public toilets and sanitary facilities for disabled people were now a legal obligation of building owners17. Alf Morris is a pivotal politician, who’s activism forced forward the progression of the landscape of disability rights.

1981 was named the ‘international year for disabled people’ by the United Nations18, this title was challenged by disability activists and advocates as the use of ‘for’ implies disabled people were passive in the receipt of the title not active participants19. This controversy progressed into the title being altered to ‘international year of disabled people’ and following this example the collective, ‘Disabled People’s International’ was also formed that year20.

The language of disability and amending it has been critical to the way people understand what being disabled means. In 1992, the Disability Living Allowance (DLA) was introduced21followed in 1995 by the Disability Discrimination Act (DDA) which legislated against disability discrimination. This centred around protecting disabled individuals from

13

Chronically Sick and Disabled Persons Act 1970 (c. 44) [Accessed 30 November 2020] (pp. 21-8) Chronically Sick and Disabled Persons Act 1970 (c. 44) [Accessed 30 November 2020] (pp. 20 – 7/8 ).

15 Chronically Sick and Disabled Persons Act 1970 (c. 44) [Accessed 30 November 2020] (pp. 25/27 -10/11) .

16 Chronically Sick and Disabled Persons Act 1970 (c. 44) [Accessed 30 November 2020] (pp. 4 (1) -1).

17 Chronically Sick and Disabled Persons Act 1970 (c. 44) [Accessed 30 November 2020] (pp. 4/8 -3/4).

18 United Nations, The International Year of Disabled Persons 1981, [n.d.] <https://www.un.org/development/desa/disabilities/the-international-year-of-disabled-persons-1981.html> [Accessed 18 January 2021].

19 NHS, A Disability History Timeline- The struggle for equal rights through the ages. (NHS North West 2013) < https://www.merseycare.nhs.uk/media/1749/disabiliyt-timeline-2013.pdf > [Accessed 18 January 2021] (pp. 4 of 7 – 14).

20 NHS, A Disability History Timeline- The struggle for equal rights through the ages. [Accessed 18 January 2021] (pp. 5 of 7 – 14).

21 NHS, A Disability History Timeline- The struggle for equal rights through the ages. [Accessed 18 January 2021] (pp. 4 of 8 – 28).

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6 being legally discriminated against, particularly relating to: “employment, the provision of goods, facilities and services or the disposal or management of premises”22. In 1996 Mencap celebrated their 50th birthday 23 and the “National Centre for Independent Living and the Independent Living Movement” put substantial pressure on the government24 resulting in the ‘Community Care (Direct Payments) Act’25. This pioneering initiative lay the groundwork for self-directed support that assists with independence. In 2001 the ‘Special Educational Needs (SEN) Disability Act’ introduces protection meaning that it is illegal to discriminate against disabled students in education26. In 2005, the Disability Discrimination (Amendment) Act grew to encompass a duty for public bodies to include disabled people to promote equality27. Between 2005/08 the World Health Organisation set up a commission to research the social determinants of health, their aim was “to support countries and global health partners in addressing the social factors leading to ill health and health inequities. The Commission aimed to draw the attention of governments and society to the social determinants of health and in creating better social conditions for health, particularly among the most vulnerable people.28”

22 Disability Discrimination Act 1995 (c.50) [Online] <https://www.legislation.gov.uk/ukpga/1995/50/contents.> [Accessed 26 January 2021] (pp.1-1) 23 The Open University, Timeline of learning disability history: Social History of Learning Disability. [n.d.] < https://www.open.ac.uk/health-and-social-care/research/shld/timeline-learning-disability-history> , [Accessed 18 January 2021] (para. 86-97).

24 The Centre for Independent Living, Independent Living Movement. (Copyright: 2021 The Centre for Independent Living) [n.d.] <https://www.cilni.org/about-us/company-history/> [Accessed 25 November 2021] (para. 3 of 6).

25 Community Care (Direct Payments) Act 1996 (c. 30) [Online] <https://www.legislation.gov.uk/ukpga/1996/30/section/7> [Accessed 18 January 2021] (pp.1-1) 26 Special Educational Needs and Disability Act 2001: Part 2 (c. 1) [Online] https://www.legislation.gov.uk/ukpga/2001/10/part/2/enacted [Accessed 12 November 2020] (pp. 11 (28A) -1).

27 Disability Discrimination Act 2005: Part 5A, Public Authorities (c. 13) [Online] <https://www.legislation.gov.uk/ukpga/2005/13/enacted> [Accessed 18 January 2021] (pp. 3 (49A)-1).

28 World Health Organisation, Social Determinants of Health, Commission on Social Determinates of Health, 2005-2008 (Copyright: 2021 WHO) [n.d.] <https://www.who.int/social_determinants/thecommission/en/> [Accessed 26 January 2021]

7 In 2010, the Equality Act was passed. This created a set of protected characteristics that it is now illegal to discriminate against29. Lastly in 2010 the Marmot review, ‘Fair society, healthy lives’ was published attracting international attention.30

Structure of this essay

Chapter one is an exploration of the definition of social structural disablism and psychoemotional disablism, reviewing in what way the two interact and correspond; this will lead to a shift in focus to the reactive act of individuals internalising social disability related stigma and will end with an explanation of the Social Model for disability. Chapter two provides an analysis of the perpetuated effects of health inequalities and an investigation into how they exacerbate problems faced by disabled people. Furthermore, there will be an enquiry into how this effect the well-being of disabled people in the UK. Chapter three reflects and critically evaluates previous research. Additionally, I have endeavoured to integrate the research results, putting forward suggestions on how to build an inclusive framework strategy beginning from childhood, putting disabled people at the centre of building an inclusive society.

29

Equality Act 2010: Part 2 (c.1) [Online] <https://www.legislation.gov.uk/ukpga/2010/15/section/4/enacted> [Accessed 12 November 2020] (pp. 4-4).

30 Parliament UK, The Marmot Review, Fair Society, Healthy Lives, Strategic Review of Health Inequalities in England post-2010 (The Marmot Review 2010) <https://www.parliament.uk/globalassets/documents/fairsociety-healthy-lives-full-report.pdf > [Accessed 12 November 2020]

8 Chapter 1

“Structure: the components and their manner of arrangement in constituting a whole.”31

What is structural disablism, and why is physical inclusivity so important? “An important difference between the experience of disabled people and those from other oppressed groups in society is that the doctrine of ‘separate but equal’ is enshrined in law”32. In modern-day Britain, it would be illegal to expect anyone who identifies with a legislated group of protected characteristics these are, ‘age, sex, gender reassignment, pregnancy and maternity, marriage and civil partnership, religion or belief, race, sexual orientation, disability33’, to only gain access to public buildings separately, through alternative entrances. However, for 14.1million people or 21% of the population in 2018/1934 who have declared disability this is their reality. Galtung 35 compares restricting access to essentials that would assist individuals in equal opportunity paths as an indirect act of structural violence. Where there is unequal access there shows unequal power, hence unequal opportunities. Uneven distribution of resources; from education, to cultural, to medical services, mean that whilst we may all be born equally, our environment is a significant factor that defines what we experience and therefore what equality will mean to individuals. Lennard Davis36 is a specialist in disability

31

Medical Dictionary for the Health Professions and Nursing, Definition of structure. (2012) <https://medicaldictionary.thefreedictionary.com/structure> [Accessed 26 January 2021] 32 Rhoda Olkin, What psychotherapists should know about disability, (New York: Guilford press 1999), p. 32 33 Equality Act 2010: Part 2 (c.1) [Online]<https://www.legislation.gov.uk/ukpga/2010/15/section/4/enacted> [Accessed 12 November 2020] (pp. 4-4).

34 Department for Work and Pensions, Family Resources Survey 2018/19 <https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/874507/fami ly-resources-survey-2018-19.pdf> [Accessed 12 November 2020] (pp.1-7).

35 Johan Galtung, ‘Violence, Peace, and Peace research’, Journal of Peace Research, 6. 3 (1969), 168-191 (pp.

169) <http://www2.kobeu.ac.jp/~alexroni/IPD%202015%20readings/IPD%202015_7/Galtung_Violence,%20Peace,%20and%20Peace% 20Research.pdf> [Accessed 26 January 2021] 36 Lennard Davis, Lennard Davis- Home, (Copyright: 2009 Lennard J. Davis) <http://lennarddavis.com/home.html> [Accessed 26 January 2021]

9 studies, he writes “To understand the disabled body, one must return to the concept of the norm, the normal body.”37 He cites Eugenics38 as the origins of our present-day societal obsession with the 'norm' and its violent history of sterilising those humans with 'undesirable' characteristics. Structural disablism is more than just the result of poor geographical planning. It is the consistent creation of architectural barriers whose design excludes and cleanses public arenas from people with disability and mobility impairments. In many western countries, access to the built environment for people with disability is only partially legislated for as guidance rather than law; therefore, there is only partial obligation to provide access. Consequently, disabled people only have partial citizenship.39

For many people living with impairments, the consequence of this lack of access has led to a lack of representation, being excluded from arenas that able-bodied people use to create progressive legislation and forward-thinking change. In 2005 the UK's department for international development, produced a policy paper aimed at reducing poverty by tackling social exclusion; they heavily stress the importance of historical context in rectifying the present. They recognise that to treat social exclusion; there must be a consideration of the historical context of the group’s origins in social exclusion. The department for international development refers to their partnership with Cambodia regarding action for disability where the departments state that they work to ensure disabled people's participation in policy change through advocacy networks. The report goes on to state the psychological effects of

37

Lennard J Davis, The disability studies reader: Constructing normalcy, (1997) (pp. 1-1) Academia.edu PDF ebook. < https://www.academia.edu/1134554/Constructing_normalcy> [Accessed 26 January 2021] 38 Demetrio, Neri, ‘Eugenics’, in Encyclopaedia of Applied Ethics, ed. by Ruth Chadwick 2nd edn (Elsevier Inc: 2012). Science Direct. [Accessed 10 January 2021] 39 Rob Kitchin, ‘Investigating Disability and Inclusive Landscapes’ Teaching Geography, (2001), 81-85 (p. 8182) <https://www.researchgate.net/publication/262008130_Disability_and_inclusive_landscapes> [Accessed 26 January 2021]

10 exclusion, “The resulting sense of powerlessness can rob people of their self-confidence and aspirations and their ability to challenge exclusion.40”

This historical exclusion creates an atmosphere of low expectations, and a low sense of selfworth that is further exacerbated by a disenfranchised lack of belonging in either political, public or private arenas of representation, this leads to fatal symptoms of social abandonment.41 Liam O'Dell, a deaf journalist wrote on Twitter, “Accessibility alleviates anxiety. If you fail to provide access after repeated requests to do so, you are causing psychological harm to disabled people.42”

Donna Reeve43 is an established disability theorist; she describes Fred, a wheelchair user's experience of attending a counselling appointment without appropriate accessibility. She details his account of having to access the building by being carried inside. Later the councillor was described as making "a show of moving furniture" to accommodate her disabled client. This attitude to granting access to Fred left him feeling inconvenient, and "in the way". Donna Reeve highlights the essential point that actions like these "reinforced the message that Fred was getting from society – that he was different and that he was not wanted here, he was out of place,” The correct method of avoiding and addressing this encounter would be to move the appointment location to one where Fred would not be

40 Department for international development, Reducing poverty by tackling social exclusion: A DFID policy paper, (2005) <https://www2.ohchr.org/english/issues/development/docs/socialexclusion.pdf> [Accessed 10 January 2021] 41 Kathie Snow, ‘Consequences of segregation: revolutionary common sense’ Disability is Natural, [n.d.] <https://nebula.wsimg.com/cfb93f25c4b9fdfd0dfbf4a53afd6bde?AccessKeyId=9D6F6082FE5EE52C3DC6&di sposition=0&alloworigin=1> [Accessed 10 January 2021] 42 Liam O'Dell, ‘Accessibility alleviates anxiety. If you fail to provide access after repeated requests to do so, you are causing psychological harm to disabled people.’ (Tweet, @LiamODellUK, 8 January 2021). <https://twitter.com/LiamODellUK/status/1347596932470992896> [Accessed 11 January 2021] 43 Donna Reeve, Donna Reeve- About me, [n.d.] <https://donnareeve.co.uk/?page_id=4> [accessed 11 January 2021]

11 humiliated by the need to be carried in, or at the very least, prepare the internal location by moving furniture pre-arrival.

Where there is no physical access for all disabled citizens there is an unfair disadvantage, presenting disabled people with disproportionate challenges when trying to connect with mainstream society. Our present culture creates an atmosphere where disabled people feel displaced, creating a lack of belonging; subsequently, this produces individual identity challenges.

Within social identity theory, the emphasis has always been on how acute a sense of belonging is to develop a healthy sense of self 44. Group identities are formed from common bonds; a healthy sense of self-esteem can be built on that. “It is crucial to remember ingroups are groups you identify with, and out-groups are ones that we don't identify with, and may discriminate against”45. It has been found that it is not just in belonging to a group that boosts morale but also creates a social skills framework that can provide protection, for instance, supporting a particular football team creates a sense of pride and safety in being part of a collective 46. Disabled people are often left out of mainstream collectives.

The Medical Model

44

Marilynn Brewer and Wendi Gardner, ‘Who Is This "We"? Levels of Collective Identity and Self Representations’, Journal of Personality and Social Psychology, 71.1 (1996) 83-93 < http://dx.doi.org/10.1037/0022-3514.71.1.83> [accessed 27 January 2021] 45 Carrie Foster, ‘Social Psychology – Discrimination-Organisation Development’ (Organisation Development 2013) <http://organisationdevelopment.org/social-psychology-discrimination/> [accessed 27 January 2021] (para. 15 of 22).

46 Graham M Vaughan, Henri Tajfel- Encyclopedia Britannica, (2020) <https://www.britannica.com/biography/Henri-Tajfel> [accessed 27 January 2021]

12 In society today, people are defined as disabled by the Medical Model. The Medical Model is defined by Devon County Council as a method of focusing on a person's impairment as the problem, and it is that that excludes an individual from mainstream society, they go on to state that this method is helpful to policymakers and legislators for reimbursing disabled people for their impairments or “what is wrong with their bodies47”. However, they acknowledge the negative message this model could be seen to perpetuate, “A disabled person could then think that their impairments automatically exclude them from participating in social activities. This subversive form of oppression can make people with an impairment less likely to challenge their exclusion from mainstream society.”48

Consider a person with an untreatable disabling diagnosis. The Medical Model is not always the most positive way to help an individual as it could reinforce the negative feelings and fears a person may feel because there is no medical answer. The Medical Model would not challenge the disabling barriers as it views the untreatable impairment as the deciding factor that restricts a person. People who choose to use the Social Model believe if the barriers have been put in place socially, they can also be removed.

47

Devon county council, Equality and Diversity: Medical model, [n.d.] <https://www.devon.gov.uk/equality/communities/disability/medical-model> [Accessed 12 January 2021] (para.

3 of 5) 48 Devon county council, Equality and Diversity: Medical model, [Accessed 12 January 2021] (para. 3/4 of 5)

13 The Social Model

In 1975 the Union of the Physically Impaired Against Segregation and The Disability Alliance 49 discussed what we now know as the Social Model for disability50. This model has had a substantial impact on the community and created a new approach to the way disability is discussed; it also impacted the way some disabled people perceived themselves and their place in the world. The Social Model considers the barriers a person may face due to their impairment, but primarily looks at the social obstacles that create segregation and they define those as the disabling factor51. It is a revolutionary new way of looking at what can be possible for a disabled person without creating flawed assumptions and low expectations.

This model does not see the person's condition as the disabling force; rather it looks at what realistically and pragmatically can be done to help the person manoeuvre through society’s blockades for it is these inequalities that prevent total social contribution and inclusion.

49

The Union of the Physically Impaired Against Segregation and The Disability Alliance, The Union of the Physically Impaired Against Segregation and The Disability Alliance discuss Fundamental Principles of Disability: Being a summary of the discussion held on 22nd November, 1975 and containing commentaries from each organisation. (1997) <https://disability-stucheies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIASfundamental-principles.pdf.> [Accessed 27 November 2020] (pp. 4- 14).

50 Scope, Social model of disability. [n.d.] <https://www.scope.org.uk/about-us/social-model-of-disability/> [Accessed 27 November 2020] 51 Scope, Social model, Online video, YouTube, 19 October 2018 <https://www.youtube.com/watch?v=3m_EbRH1aF4&feature=emb_title > [Accessed 12 January 2021]

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Fig. 1. Peniel Foundation, ‘This model says that people are disabled by barriers in society and not by having the impairment itself. The Social Model helps us recognize barriers that make life difficult for people with disabilities. Removing this barriers created equality and offers people with disabilities more independence, choice and control. Have you ever heard about the Social Model of disabilities.’ (Screenshot, Instagram, @penielfoundation, 3 November 2020) <https://www.instagram.com/p/CHIFlVylhRN/ > [Accessed 12 January 2021]

Scope is a UK leading disability charity promoting social justice and equality. On their website they show a video interview with disability advocates sharing their opinions of the Social Model. A resounding six out of six participants praised the model, saying it helped them gain confidence and self-esteem. An interviewee described the feelings the Social Model had introduced, such as removing passivity in his medical impairment, reinforcing that it is a society's choices that disable 52.

Psycho-emotional disablism is a mutually inclusive effect of structural disablism. The multifaceted dimensions of inequalities within the lives of disabled people and the low expectations bought about through ablism are the consequences of historic globally sustained

52

Scope, Social model, Film: what is the social model of disability, (See Appendix A for transcript) [Accessed 12 January 2021]

15 oppression. Many of our interpersonal skills are developed through socialising. In a world that still holds a Eugenic vision towards difference, acts of invalidation via patronising behaviours or staring onlookers produce anxiety as an unavoidable consequence. An ignorance towards differences also causes many disabled people to go to great lengths to conceal their impairments; this can be exhausting. Jess is a disability activist who uses Instagram as her platform to challenge stereotypes, negative attitudes and regressive disability language. In January 2021, she used her platform to dispute the use of the word 'brave' concerning people with disabilities. Her picture was titled, "Please do not call my existence brave - it does not mean what you think." In this post, Jess describes the impact on her psycho-emotional health when people refer to her existence as brave. She details her internal reaction: "what I hear is that just existing in this body requires some kind of extraordinary strength, and that most people would not want this existence." She acknowledges that the sentiment may come from a well-intended perspective, although she says, "Surviving is brave, but my survival is no more brave than anyone else's". 53 Many disabled people internalise these feelings, in correlation with many other minority groups. Feelings such as these cause stress, a direct link to illness and the cause of many conditions being exacerbated. A vicious cycle of emotional pain, creating physical harm. Dr Amy Kavanagh is a visually impaired activist and campaigner. She described her experience of being refused physical access to her place of work, “On Thursday, experiencing an access failure at work was so traumatic it caused me to have a panic attack. Other Half had to stop

53

Jess Caron, ‘Please do not call my existence brave - it does not mean what you think.’ (Instagram Post, @chronically.jess, 6 January 2021), <https://www.instagram.com/p/CJsMsTiDQbW/?utm_source=ig_web_copy_link > [Accessed 12 January 2021].

16 me from self harming. I’m still recovering from it.54” She continues sharing her experience on the social media platform Twitter in a further tweet explaining “The trauma comes from the repeated feeling of asking for support & being told you don’t deserve it. It eats away at your confidence & self worth. I feel like a 9 year old again, asking the teacher for help & being screamed at for not being able to see the text book”.55

54

Dr Amy Kavanagh, ‘On Thursday, experiencing an access failure at work was so traumatic it caused me to have a panic attack. Other Half had to stop me from self harming I’m still recovering from it.’ (Tweet, @blondeHistorian, 9 January 2021). <https://twitter.com/BlondeHistorian/status/1347860083317866499 > [Accessed 11 January 2021] 55 Dr Amy Kavanagh ‘The trauma comes from the repeated feeling of asking for support & being told you don’t deserve it. It eats away at your confidence & self worth. I feel like a 9 year old again, asking the teacher for help & being screamed at for not being able to see the text book.’ (Tweet, @blondeHistorian, 9 January 2021) <https://twitter.com/BlondeHistorian/status/1347860083317866499> [Accessed 11 January 2021]

Chapter 2

“Health inequalities are unfair and avoidable differences in health across the population (…)

These conditions influence our opportunities for good health, and how we think, feel and act, and this shapes our mental health, physical health and wellbeing”- NHS England56.

In this chapter, there will be an analysis of the perpetuated and wholly avoidable health inequalities that exacerbate the disproportionate obstacles disabled people face. In addition, there will be an investigation into the effects that cost-cutting policy and legislation have on the general wellbeing of disabled people throughout the UK. Inequalities in health are regularly under review, with governments seemingly stuck in a Groundhog Day scenario, repeatedly commissioning reports and not actioning the findings or recommendations. The evidence is damning, and the lack of action surrounding the publication of these reports is deafening.

Health inequalities that affect everyone.

There are a number of universally recognised factors that affect public health, they are for example: unemployment, low income and living in a deprived area. These will all have an effect on the health of the entire population. Deprivation is defined by the Cambridge dictionary as: ‘A situation in which you do not have things or conditions that are usually considered necessary for a pleasant life57’. Subsections of deprivation are categorised by the

56

NHS, Definitions for Health Inequalities, [n.d.] <https://www.england.nhs.uk/ltphimenu/definitions-forhealth-inequalities/> [Accessed 27 November 2020] (para. 2 of 8).

57 Cambridge dictionary, deprivation, [n.d.] <https://dictionary.cambridge.org/dictionary/english/deprivation> [Accessed 21 January 2021]

18 NHS as, “Income Deprivation, Employment Deprivation; Education, Skills and Training Deprivation; Health Deprivation and Disability; Crime; Barriers to Housing and Services; Living Environment Deprivation.”58 Examples of specific vulnerable groups within society, or ‘inclusion health’ groups are: Migrants; Gypsy, Roma and Traveller communities; homeless people and rough sleepers; and sex workers. Another factor is geography and the different challenges faced in either rural or urban areas.59 Many people experience several of these factors which all contribute to the national standard of public health, not only for people with disabilities.

In 2008 the World Health Organisation’s former Director-General JW Lee, set up a commission under the ‘Social Determinants of Health (SDH)’. The objective was to collate evidence on the social determinants of health and the interaction with inequality in public health. From then the commission would formulate advice on how to create a cross border (whether that be local or international) health equality. The aim was to create global action to banish the reality of postcode lottery health systems. 60

The report found that the same trajectory was identified globally, that the lower the socioeconomic position, the worse the health. This report stated that where health inequities were found to be preventable, they would be labelled as an unfair and unjust systematic failure.

58 59 60

NHS, Definitions for Health Inequalities. (para. 4 of 8) [Accessed 27 November 2020] NHS, Definitions for Health Inequalities. (para. 5 of 8) [Accessed 27 November 2020]

World Health Organisation, Closing the gap in a generation: Health equity through action on the social determinants of health. Final Report of the Commission on Social Determinants of Health, (2008) <https://apps.who.int/iris/bitstream/handle/10665/43943/9789241563703_eng.pdf;jsessionid=2F85FA2BB1B2F E9D0B0BA0DB068D8DC0?sequence=1> [Accessed 30 November 2020] (pp. 1-Note from the chair)

19 “It does not have to be this way and it is not right that it should be like this61”

The report concludes that internationally closing the health inequalities attainment gap could be achieved within a generation’s timescale. However, it is amended to ‘an aspiration not a prediction’62. Primary author Sir Michael Marmot deems it not unrealistic and states that in many international talks.63 The study also looks at the varying life expectancy data across the globe, claiming that, if the strategies they suggest are followed correctly, they could rectify this gap. In order to close the gap the main elements need to be implemented globally.64 In chapter one under the subheading, A new agenda for health, equity, and Development, the commission writes, “We start from the proposition that there is no necessary biological reason why a girl in one part of the world, say Lesotho, should have a life expectancy at birth (LEB) shorter by 42 year than a girl in another, say Japan. Similarly, there is no necessary biological reason why there should be a difference in LEB of 20 years or more between social groups in any given country. Change the social determinants of health and there will be dramatic improvements in health equity.65” The three top recommendations were: “Improve daily living conditions. Tackle the inequitable distribution of power, money, and resources. Measure and understand the

61

World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 1- 26)

62

World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 7- 1)

63

Michael Marmot, Social Justice and Health Equity: A talk with Sir Michael Marmot, Online video, YouTube, 16 December 2018, <https://www.youtube.com/watch?v=UZlYnE3OhRE&t=639s> [Accessed 30 November 2020] 64

World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 7- 26)

65

World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 6- 26)

20 problem and assess the impact of action.66” The highlighted elements that this essay will now focus on are: the upgraded development of daily environments specifically focusing on child early development ensuring each child has the best start in life67. The education attainment gap must be closed68. The unequal distribution of authority wealth and resource must be confronted69. Suitable employment and working conditions must be upgraded for all70. A healthy standard of living must be universally and non-discriminatorily available and applied71.

In 2008 governments were armed with the knowledge and means to close that fatal gap and they were presented with a choice, they were given the opportunity to save lives, (entailing implementation of the recommendations made by the commission) or to ignore the commission and allow people to die from avoidable causes:

“This ends the debate decisively. Health care is an important determinant of health. Lifestyles are important determinants of health. But, let me emphasize, it is factors in the social environment that determine access to health services and influence lifestyle choices in the first place.”

-Director-General Dr Margaret Chan, at the launch of the final report of the

CSDH72

66

World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 1-2)

67

World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 1-202) World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 5-202) 69 World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 1-204) 70 World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 16-202) 68

71

World Health Organisation, Closing the gap in a generation, [Accessed 30 November 2020] (pp. 9-202) World Health Organisation, Dr Margaret Chan, Launch of the final report of the Commission on Social Determinants of Health: Statement to Press, [n.d.] <https://www.who.int/dg/speeches/2008/20080828/en/ > [Accessed 1 December 2020] 72

21 Returning to the social determinants of health that affect different local authorities uniquely, it should be known that they fluctuate across county borders dramatically due to varying priorities of different localities. Cuts to public resources and services promote a society with uneven resource allocation and authoritative control. Prejudiced distribution of wealth formulates thoroughly avoidable inequalities. The commission’s report is clear that unequal health experiences are not a natural occurrence. The findings of the report are that inadequately informed social policy made at government level in conjunction with an imbalanced economic arrangement creates systemic disablism which has been labelled as toxic.

Sir Michael Marmot, a pivotal figure of critical social justice reforms from University College London, delivered a talk at the 2014 World Minds Annual Symposium.73 After the World Health Organisation’s commissioned the report, he spoke about how the UK government invited him to advise on applying its global findings to Great Britain. Sir Michael then provided the specific report calling it: Fair society, healthy lives. The report details that if we put equality at the heart of new legislation, that public health would improve, across the board. The standard of the concept of fairness which is referred to is: when foresight is available, to take action on preventable causes of public ill-health. If a crisis is avoidable, and a government or institution chooses not to avoid it, they choose to perpetuate social injustice.

73

Michael Marmot, Sir Michael Marmot: Social Determinants of Health (2014 WORLD.MINDS), Online video, YouTube, 4 December 2014 <https://www.youtube.com/watch?v=h-2bf205upQ&t=55s [Accessed 1 December 2020]

22 It is not just poverty that is a significant factor in public ill-health. Inequality has been persistently highlighted as a primary cause. To expand further: if it was purely a case of poverty then people who have enough, who live comfortably above the poverty line should have the same health benefits as those in the highest bracket of wealth. They do not, from which we can infer that this is an issue of systematic inequality. 74

To prevent these disparities, all government departments must work together under the resounding banner of ‘All government sectors are healthcare sectors.’ All the conditions of daily life affect public health. It cannot be the health sector’s sole responsibility to tackle these social symptoms. Many are only prominent because they come from the resulting ripple effect other sectors’ policies have on health. The health sector is the recipient of the side effects of policies from other departments. Every policy should take into account the impact that the specific legislation will have on public health.

Marmot presented this slide when he delivered his talk to the university of California Berkeley (pictured below) representing all the departments that requested he delivered a talk on the social determinants of health research75.

74

Michael Marmot, Sir Michael Marmot: Social Determinants of Health [Accessed 1 December 2020]

75

Michael Marmot, Sir Michael Marmot: Social Determinants of Health [Accessed 1 December 2020]

23

Fig. 2. Michael Marmot, Social Justice and Health Equity: A talk with Sir Michael Marmot, (Screenshot of online video, YouTube, 16 December 2018) <https://www.youtube.com/watch?v=UZlYnE3OhRE&t=639s> [Accessed 30 November 2020]

Marmot devised a recipe of quintessential, critical, and necessary actions that needed to be implemented by the government urgently in order to bridge the gap between local authority health inequality discrepancies. They were not implemented.

Examples of disability specific health inequalities.

The Equality for Human Rights Commission (EHRC) produced a report called: Being disabled in Britain: a journey less equal (2016) 76. This paper reported that although some progress had been made, it was minimal and there were far more barriers for disabled people than ever before. Through evidence-based findings, they identified the top six areas of life to review for disabled citizens: Education, Work, Standard of living, Health and Care, Justice and Detention, and Participation and Identity.

76

Equality and Human Rights Commission, Being disabled in Britain: A journey less equal [Accessed 1 December 2020]

24 Education

Between 2014/15 children with Special Educational Needs (SEN) were three times less likely to meet their educational goals than neurotypical children77. Between 2015/16 young people aged 16-18 were at the very least twice more likely, than their non-disabled peers to not be in education, employment or training. Regarding further education, there are fewer disabled people holding a degree level qualification than those of able-bodied people holding the same qualification. The percentage of disabled people without qualifications was three times higher than their able-bodied counterparts. Due to the introduction of tuition fees, further education is becoming more increasingly an unattainable luxury, it is still however statistically proven to increase chances of later employment.

Employment and Standard of Living

The governments access to work programme was designed to help prevent disabled people from being discriminated against in the workplace78. The access to work grant allows employers to apply for funding to make reasonable adjustments to the workplace to accommodate the disabled employee’s needs. Within the UK Government’s employment schemes, the efficacy for disabled people is in question. In the Access to Work and the Work Programme only 18%79 of disabled people were likely to achieve employment form the

77

Equality and Human Rights Commission, Being disabled in Britain: A journey less equal, [Accessed 1 December 2020] (pp. 2-8).

78

GOV.UK, Get support in work if you have a disability or health condition (Access to Work) [n.d.] <https://www.gov.uk/access-to-work > [Accessed 1 December 2020] 79

Equality and Human Rights Commission, Being disabled in Britain: A journey less equal, [Accessed 1 December 2020] (pp. 4 -8).

25 scheme. In Britain (2015/16) 47.6% of disabled adults were in employment, compared with 80% of non-disabled adults, it is worth noting that the Equality and Human Rights Commission’s report highlights the prominence of this disproportionate gap, reporting that it has widened since 2010/11.

The pay gap within the disabled population is sharply increasing. In 2015/16, on average, “disabled people earned £9.85 compared with £11.41 for non-disabled people.80” The report also describes young women with disabilities as earning the least throughout the whole of the UK81.

Between 2014/15 the data shows that 30% of adults within the working-age group in households with at least one disabled occupant had an income that was 60% lower than the average household income82. Following this, 59% of families experiencing income poverty contained a disabled person and were living without the ability to afford basic resources (food, clothes, heating, and educational resources)83. The under-occupancy charge or bedroom tax, has had a massively disproportionate effect on disabled people: 47% of housing benefit recipients were affected by this84. The impact of this, presented disabled people with far more challenges when trying to live independently which is vital to empowerment and creating a good sense of self.

80

Equality and Human Rights Commission, Being disabled in Britain: A journey less equal, [Accessed 1 December 2020] (pp. 6 -8).

81

Equality and Human Rights Commission, Being disabled in Britain: A journey less equal, [Accessed 1 December 2020] (pp. 6 -8).

82 Equality and Human Rights Commission, Being disabled in Britain: A journey less equal, [Accessed 1 December 2020] (pp. 2 -9).

83 Equality and Human Rights Commission, Being disabled in Britain: A journey less equal, [Accessed 1 December 2020] (pp. 2 -9).

84 Equality and Human Rights Commission, Being disabled in Britain: A journey less equal, [Accessed 1 December 2020] (pp. 4 -9).

26

Mental health care

It seems to in be that in present-day Britain, we all have a waiting list story. Within mental health services, the idea of primary care is slipping away. The target wait time for a new patient to access primary care was assessed to be 28 days by the Equality and Human Rights Commission85. As a response to this mental ill health pandemic specialist children and young people services received a 25% cut to their budgets between 2011/1386. “The proportion those patients who started treatment within 28 days varied between 3.0% and 96% in 2013-14 depending on the clinical commissioning groups. 11% of patients waited over 90 days.87”

From 2010/13 the British Medical Journal reported that one million people had their right for disability benefits reassessed under the governments Work Capability Assessment88. The revaluation was intended to reduce the amount of people receiving the benefit by a compulsory assessment to determine if the disabled person is fit for work. If they were assessed as fit to work, they would have their eligibility for funding forcibly removed89. The University of Liverpool and the University of Oxford carried out an observational study,

85

Equality and Human Rights Commission, Being disabled in Britain: A journey less equal [Accessed 1 December 2020] (pp. 2 -10).

86 Equality and Human Rights Commission, Being disabled in Britain: A journey less equal [Accessed 1 December 2020] (pp. 2 -10).

87 Equality and Human Rights Commission, Being disabled in Britain: A journey less equal [Accessed 1 December 2020] (pp. 1 -85).

88 Benjamin Barr, David Taylor-Robinson, David Stuckler, ‘First, do no harm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study’ J Epidemiol Community Health, Vol 70. 4 (2016) 339-345 <https://jech.bmj.com/content/jech/70/4/339.full.pdf > [Accessed 1 December 2020] 89 Department for work and pensions, Guidance, A guide to Employment and Support Allowance – the Work Capability Assessment. (2016) <https://www.gov.uk/government/publications/esa214-a-guide-to-employmentand-support-allowance-the-work-capability-assessment/a-guide-to-employment-and-support-allowance-thework-capability-assessment> [Accessed 22 January 2021]

27 called: ‘First do no harm: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study’ The conclusions found by the study are as follows:

“The programme of reassessing people on disability benefits using the Work Capability Assessment was independently associated with an increase in suicides, self-reported mental health problems and antidepressant prescribing. This policy may have had serious adverse consequences for mental health in England, which could outweigh any benefits that arise from moving people off disability benefits.” 90

The Mirror newspaper reported this story, “as the fitness to work tests linked to 590 extra suicides in England say experts”91. The paper reported 279,000 additional mental ill-health cases and published the figure of 725,000 further prescriptions for antidepressants having been issued, and all said to be associated with the work capability assessment 2010/13. The NHS criticised their findings by saying “The researchers say the figure could be anywhere between 220 and 950, which is quite a wide margin of error 92.” Researchers expanded upon the evidence and concluded that as this was the first study into the effects, the WCA policy has on mental health, and the results showed that: “doctors should consider their involvement in implementing WCAs on ethical grounds.” 93

90

‘First, do no harm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study’ [Accessed 1 December 2020] (pp. 4- 339).

91 Ben Glaze, Fitness to work tests linked to 590 extra suicides in England say experts, (2015) <https://www.mirror.co.uk/news/uk-news/fitness-work-tests-linked-590-6844546>[Accessed 28 January 2021] 92 NHS, Study suggests disability test link to suite risk. (2015) <https://www.nhs.uk/news/mental-health/studysuggests-disability-test-link-to-suicide-risk/> [Accessed 1 December 2020] 93 NHS, Study suggests disability test link to suite risk. [Accessed 1 December 2020]

Chapter 3

“One in four people living with disabilities say they feel valued by society”94.

Through this research three key points have been identified as being in greatest need of demanding action and attention to construct a society where disabled people are no longer disadvantaged from day one.

First: Building a better tomorrow, focusing on child development.

As proven by the previous research, the recognition of the Social Determinants of Health is imperative and will save lives. Culminating in the slogan all sectors are healthcare sectors.

A tragic example of government sectors overlooking the impacts on health within policy was the death of nine year-old Ella Kissi-Debrah. The environmental department did not act on the alarming pollution levels that would ultimately lead to Ella’s death. She was the world's first officially recorded fatality where pollution was named on the death certificate95.

To progress there must be a specific focus on child development. In order to construct a socially unbiased inclusive framework strategy it must start at the beginning, from childhood, so that we may avoid socially acquired learnt stigma, phobia, and predisposed assumptions.

94

Scope: Everyday-Equality-Strategy (2017-2022) < Read our Everyday Equality strategy (PDF, 10MB)> [Accessed 30 November 2020] (pp. 6- 5).

95 Harry Cockburn, ‘Ella Kissi-Debrah inquest: Coroner says air pollution contributed to death of nine-year-old in landmark ruling’ Independent, 16 December 2020 < https://www.independent.co.uk/news/uk/homenews/ella-kissi-debrah-inquest-result-pollution-b1774841.html> [Accessed 12 January 2021]

29 Scope96 pioneer disability research as they work with disabled people, not for disabled people. As an organisation they are led by disabled panellists, putting authentic lived experience at the centre of their inquiries and improvements. They produced a series of objectives and mission statements regarding the action they felt was needed most urgently to tackle inequalities disabled people face. They have emphasised the importance previously echoed by Sir Michael Marmot regarding every child's right to get an equal start in life and are committed to ensuring this policy is implemented justly and in accordance with the community's specific needs, and it is of great importance in creating sustainable community goals. Scope wrote that they are primarily focusing on three main areas which disabled people have told them matter most these are: children and families, independent living, and financial security97. Provisions must be made so that families with disabled members are under less financial pressure by assisting them towards financial stability. “On average, disabled adults face extra costs of £583 per month.98” They further report that families with one disabled child incur an average extra monthly cost of £528 99, and families with two or more disabled children where both parents are unemployed face £649 extra costs100.

There are immense benefits for creating financial stability. It is proven to reduce the longterm health effects of stress and anxiety; a leading severe cause of health problems 101. The side effects can range from, digestive problems, stroke and heart disease, memory and

96

Scope, Scope: Research panel, [n.d.] < https://www.scope.org.uk/research-panel/> [Accessed 28 November 2020] (para. 2 of 5).

97 Scope, Scope: Everyday Equality, [n.d.] < https://www.scope.org.uk/about-us/everyday-equality/> [Accessed 28 November 2020] (para. 4 of 12).

98 Scope, The disability price tag- policy report, (2019) < Disability Price Tag policy report 2019> [Accessed 28 January 2021] (pp. 4-2) 99

Scope, The disability price tag- policy report, (2019) < Disability Price Tag policy report 2019> [Accessed 28 January 2021] (pp. 1-8).

100 Scope, The disability price tag- policy report, (2019) < Disability Price Tag policy report 2019> [Accessed 28 January 2021] (pp. 2-8).

101 Mayo Clinic Staff, Chronic stress puts your health at risk. (2019) <https://www.mayoclinic.org/healthylifestyle/stress-management/in-depth/stress/art-20046037> [Accessed 1 December 2020]

30 concentration difficulties. The Sutton Trust work to further and promote societies representation of diversity and equality progression, which they refer to as social mobility, creating and providing research designed to further this agenda. In their opening statement on their website they say;

“Social mobility in Britain is low. The educational opportunities and life chances of a child born today are strongly linked to their parents’ socio-economic background. This is the challenge we face{…}We fight for social mobility from birth to the workplace so that every young person – no matter who their parents are, what school they go to, or where they live – has the chance to succeed in life.”102

In conjunction with the social determinants of health framework, there is a recommendation that Adverse Childhood Experiences (ACEs) exposure must be minimised. All children must begin their lives on an equal platform. “Children are at a significantly increased risk of poor health outcomes across the life course compared with those with no ACEs” 103. This links directly with the many symptoms of child poverty. To qualify, the central ACEs are: 'Parental separation, Verbal/Physical/Domestic/Drug/Alcohol abuse, Mental illness, and Incarceration'.

The Centers for Disease Control and Prevention published a statement saying:

“We now know that adverse childhood experiences have a significant impact on an individual’s future health. Preventing traumatic experiences in childhood and initiating key interventions when they do occur will lessen long-term health consequences and benefit the

102

The Sutton Trust, About us. (2021) <https://www.suttontrust.com/about-us/> [Accessed 19 January 2021] (para. 1/2- 15).

103 Michael Marmot, Jessica Allen, Tammy Boyce, Peter Goldblatt and Joana Morrison, Health equity in England: The Marmot Review 10 years on (Institute of Health Equity: 2020), <https://www.health.org.uk/publications/reports/the-marmot-review-10-years-on> [Accessed 1 December 2020]

31 physical and emotional well-being of individuals into adulthood.” CDC Director Robert R. Redfield, M.D104.

Following the national estimate in the United States of America (2017) it was found that 13% of adults suffering from avoidable heart disease (equating to up to 1.9 million) were directly linked to ACE experiences105, a further 2% equating to 2.5 million avoidable obesity cases106, and an overwhelming 44% equating to 21 million avoidable cases of diagnosed depression107, provides startling evidence of how closely poor health is associated with ACEs and therefore the social determinants of health. Public Health Wales suggest in a report titled: ‘Responding to Adverse Childhood Experiences’, that resilience supported by financial security, trust, local community engagement, and finally participation in exercise is at the core of combating these adverse effects108. Resilience support is clinically proven to help parents of young disabled children contend with the challenges they face109.

Harvard Universities, Center on the Developing Child published four critical points they feel need to be addressed to create a positive outcome for children. These are: “facilitating supportive adult-child relationships; building a sense of self-efficacy and perceived control;

104

Centres for Disease Control and Prevention, Preventing Adverse Childhood Experiences (ACEs) to improve U.S. health, (2019) <https://www.cdc.gov/media/releases/2019/p1105-prevent-aces.html> [Accessed 30 November 2020] (para. 4 of 24).

105 Centres for Disease Control and Prevention, Preventing Adverse Childhood Experiences (ACEs) to improve U.S. health, [Accessed 30 November 2020] (para. 12 of 24).

106 Centres for Disease Control and Prevention, Preventing Adverse Childhood Experiences (ACEs) to improve U.S. health, [Accessed 30 November 2020] (para. 13 of 24).

107 Centres for Disease Control and Prevention, Preventing Adverse Childhood Experiences (ACEs) to improve U.S. health, [Accessed 30 November 2020] (para. 15 of 24).

108 Lisa Di Lemma, Alisha R Davies, Katharine Ford, Karen Hughes, Lucia Homolova, Banjamin Gray, Gillian Richardson, Responding to Adverse Childhood Experiences: An evidence review of interventions to prevent and address adversity across the life course (Public Health Wales: Bangor University, 2019) <https://research.bangor.ac.uk/portal/files/23440237/RespondingToACEs_PHW2019_english.pdf> [Accessed 1 December 2020].

109 Tali Heiman, ‘Parents of Children With Disabilities: Resilience, Coping, and Future Expectations’, Journal of Development and Physical Disabilities, 14. 2 (2002) 159- 169 (pp. 159) < 10.1023/A:1015219514621> [Accessed 28 January 2021]

32 providing opportunities to strengthen adaptive skills and self-regulatory capacities; and mobilizing sources of faith, hope, and cultural traditions.110”

An essential part of building a healthy identity comes from our social interactions, four out of ten parents of disabled children reported their child either 'rarely or never' have had the opportunity to socialise with non-disabled peers.111 Moreover, direct entrance to schools for special educational needs and disability (SEND)112 creates segregation from a very early age.

Separated ‘special’ schools were founded in the 19th Century, during a time where asylums for ‘idiots and lunatics’ were the norm113. There are two main arguments I would like to focus on which promote keeping these institutions, firstly it is that to integrate learning would be too expensive114, and secondly that having integrated disabled children would be ‘too distracting’ for able bodied children.

Firstly: “We need to look at the full picture: as well as running costs of maintaining separate settings with concentrated resources, disabled children need to get to them every day.

Millions of pounds are spent each year to transport disabled children long distances twice a day, often by taxi with an escort, in order to educate them away from their non-disabled peers. This makes neither financial nor social or educational sense.” 115

110

Center on the Developing Child at Harvard University, Resilience, [n.d.] https://developingchild.harvard.edu/science/key-concepts/resilience/. [Accessed 30 November 2020] (para. 5 of 7).

111 Scope, Everyday Equality: Our strategy 2017 to 2022. [Accessed 28 January 2021] (pp. 4-6).

112 GOV.UK, Children with special educational needs and disabilities (SEND), [n.d.] < https://www.gov.uk/children-with-special-educational-needs> [Accessed 30 November 2020] 113 Historic England, Disability in the 19th century. [n.d.] <https://historicengland.org.uk/research/inclusiveheritage/disability-history/1832-1914/> [Accessed 19 January 2021] (para. 7 of 11).

114 Centre for Studies on Inclusive Education, Frequently asked questions on education for disabled children and young people. < http://www.csie.org.uk/inclusion/faq.shtml.> [Accessed 30 November 2020] (para. 4 of 19).

115 Centre for Studies on Inclusive Education, Frequently asked questions on education for disabled children and young people. [Accessed 30 November 2020] (para. 4 of 19).

33 Secondly: “harassment of any student is far less likely to occur in a school which fosters inclusive values. If disabled children are at risk of being bullied, it makes more sense to address the bullying and minimise the risk, rather than deciding to exclude disabled children as a way of protecting them.”116

To create a society free of stigma; there needs to be an immediate implementation of integrating disabled and non-disabled children within social structures as well as schools. Jess Philips was the 2019 MP for Birmingham Yardley, and is the 2021 Shadow Minister for Domestic Violence and Safe Guarding117, in 2019 she created a fundraising page118 campaigning alongside Save our Schools group for funding to transport thousands of children to Westminster to protest the budget cuts to children with SEN. Philips states that the school her child who has SEN attends has been forced to close on Fridays due to lack of funding.

She states that schools can no longer support these children and are being pushed to ask parents to home school. “Yes you read that right , disabled people are being cleansed from our schools by cuts.” 119 In addition to this she declares, “The government has failed in the most basic job it has to provide schooling for all of our children 5 days a week. We intend to show them that we will not take this.” 120

To summarise, there is no founded argument for disagreeing that learning should be integrated under the premise of funding. I believe there are no downsides to abolishing

116

Centre for Studies on Inclusive Education, Frequently asked questions on education for disabled children and young people. [Accessed 30 November 2020] (para. 8 of 19).

117 Jess Philips, Jess Phillips Labour MP for Birmingham Yardley (2021) <http://jessphillips.net.> [Accessed 19 January 2021] 118 Go Fund Me, Jess Phillips: Keep our kids in school (2019) < https://www.gofundme.com/f/5pznt-keep-our-kids-in-school> [Accessed 19 January 2021] 119 Jess Phillips, Keep our kids in school, [Accessed 19 January 2021] (para. 2 of 7).

120 Jess Phillips, Keep our kids in school, [Accessed 19 January 2021] (para. 4 of 7).

34 ‘Special’ schools, it would further the strengthening and protection of provisions for disabled children, giving the issue more exposure. Furthermore, to introduce children to differences, and disability could strengthen empathy and understanding, leading to a normalisation of disability.

It is an issue of prejudice, and stigma based historical rhetoric that able-bodied children's learning capacity will be affected by the presence of a child with special educational needs and disability.

Second: The importance of fairness.

Social policy must put fairness at the heart of decision making. Reflecting constituents' needs as diverse individuals referring to the constituents for input, emphasising active community engagement and communication. A government that has not had the same experiences as the people it governs must make it a priority to become informed and socially aware in a contemporary context.

I would like to infer a possible reason for the continuing unsuitable policy by revisiting Social Identity theory mentioned in chapter two. We are taught to consider the origins of prejudice, coming from lack of knowledge of, ‘out-groups’ who we do not identify with, usually because of a lack of knowledge or exposure to the group. Lumen Learning describe the origins of prejudice and discrimination and they provide the example of, “public and private schools are still somewhat segregated by social class.” 121 The Sutton Trust provided a

121 Lumen learning, Why do Prejudice and Discrimination Exist? [n.d.] <https://courses.lumenlearning.com/waymaker-psychology/chapter/why-do-prejudice-and-discriminationexist/> [Accessed 22 January 2021] (para. 1 of 7).

35 report that detailed the educational background of appointed ministers to the Prime Minister Boris Johnson’s cabinet. Considering that only about 6%122 of the UK’s entire population attend fee paying schools, it is interesting to contemplate the figures that have emerged from (2021) Boris Johnson’s cabinet. A cabinet that is elected to reflect the people’s interests allowing them to work as our representatives. The education history statistics for this cabinet are as follows: 65% attended private school. Half of the new cabinet attended either Oxford University or Cambridge University which in stark contrast with the general public, which less than 1% have attended123. Recalling social identity theory laid out in chapter one I would like to refer to Carrie Foster’s writing on social psychology, “They identify more with similar people (in-group) than with those who are less similar (out-group). Due to things like ingroup favoritism and negative stereotyping, minorities are often excluded from group membership and decision-making activities.124” The population is the Etonian’s ‘out group’.

An example of the effects of not putting fairness and consideration in place is the effect of the under-occupancy tax, (bedroom tax) had on disabled people, forgotten within implementing this strategy. Often disabled people living independently will struggle to fulfil the requirements of finding additional people to fill the occupancy.

122

Frances Green. Jake Anders. Morag Henderson. Golo Henseke. Who chooses private schooling in Britain and why? Centre for Learning and Life Chances in Knowledge Economies and Societies (2017) <https://www.llakes.ac.uk/sites/default/files/Green%2C%20Anders%2C%20Henderson%20%26%20Henseke.p df> [Accessed 19 January 2021] (pp. 3-36).

123

Social Mobility Commission, The Sutton Trust, Elitist Britain 2019- The educational backgrounds of Britains leading people (2019) <https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/811047/Eliti st_Britain_2019_-_Summary_Report.pdf > [Accessed 19 January 2021] (pp. 1-2).

124 Carrie Foster, ‘Social Psychology – Discrimination-Organisation Development’ (Organisation Development 2013) <http://organisationdevelopment.org/social-psychology-discrimination/> [Accessed 27 January 2021] (para. 19 of 22).

36 The Supreme court ruled in favour of two families who campaigned against the department of work and pensions to allow disabled children who need a spare room for an overnight carer to be exempt from the taxation. A disabled woman: Jacqueline Carmichael, campaigned for her right to be exempt from the under-occupancy tax due to her spare room being essential for her and her partner. They were unable to sleep together, owing to her disabling medical condition. The consequences of the medical condition meant that she had to sleep in a hospital bed. Due to the space restrictions, the couple said there was categorically no room for another bed in the same room as Jacqueline. The bedroom tax was unfair and inappropriate for them. This situation stresses the need for policy to be more considered and diverse. There would have been no need for the couple to go through four years of legal proceedings if this has been done initially. “Jacqueline referred to the Supreme Court decision as a ‘human rights victory.”125 “Let’s also not forget that the claims of five other families were dismissed by the court. These were largely brought by disabled people deemed not to have a ‘transparent medical need’ for another bedroom {…} One of the claimants used the room to store his vital medical equipment and was told his needs could be met through a separate assessment as part of the Discretionary Housing Payments (DHP) Scheme.”- Sue Bott, Deputy CEO Disability Rights UK126.

Bott goes on to describe how the Equality and Human Rights Commission intervened in the forementioned case, using the Commission’s legal powers, highlighting Article 14 of the United Nations Convention of Human Rights which outlines the law that Human Rights must

125

Sue Bott, Bedroom tax: success and failure for disabled people at the Supreme Court, (Equality Human Rights Commission 2016) < https://www.equalityhumanrights.com/en/our-work/blogs/bedroom-tax-successand-failure-disabled-people-supreme-court> [Accessed 30 November 2020] (para. 3 of 13).

126 Sue Bott, Bedroom tax: success and failure for disabled people at the Supreme Court, [Accessed 19 January 2021] (para. 5 of 13).

37 be protected free of discrimination, including the right to a family life. Some cases were still unsuccessful in overturning the tax to which she writes, “Even though the Supreme Court ruled that the bedroom tax clearly discriminates against disabled people, it is ‘justified’ in law because of the existence of the DHP Scheme.”127

Third: Creating equal opportunities.

Constructing equal access to the distribution of essential resources is the primary foundation for social justice. Architecture that does not create equal access for 14.1 million people, promotes segregation and is in Galtung’s words in ‘Violence, Peace, and Peace research’ as an act of violence128.

It is important to consider also the health improvements revealed by empowering local communities. Local authority policymakers should involve their disabled constituents in creating new services and legislation. Community health partnerships are essential to tackling health inequalities with additional local government funding enabling the local council to facilitate their community's needs. Input for renovations in public services must be driven by the diverse wants and needs of communities129. Pride in the local community will also support higher independence and assistance to facilitate the aspirations disabled constituents may currently feel are not presently attainable. Local communities must be supported to create sustainable outcomes, especially around child poverty and early development.

127

Sue Bott, Bedroom tax: success and failure for disabled people at the Supreme Court, [Accessed 19 January 2021] (para. 6 of 13).

128 Johan Galtung, ‘Violence, Peace, and Peace research’, Journal of Peace Research, [Accessed 26 January 2021] (pp. 167-191).

129 Local Government Association, Empowering patients, service users and communities. [n.d.] <https://www.local.gov.uk/our-support/our-improvement-offer/care-and-health-improvement/integration-andbetter-care-fund/better-care-fund/integration-resource-library/empowering-patients-service-users-andcommunities>[Accessed 26 January 2021]

38 Individualised government packages need to be available to different localities throughout the UK and tailored to the respecting localities' specific needs.

Financial support for disabled people must be written in an accessible and inclusive format.

There will be an increased number of opportunities available to disabled citizens when the correct financial assistance is there. It will encourage independent living and will promote feelings of self-worth resulting from self-sufficiency; this will allow a disabled person to fulfil their aspirations. There is a current lack of funding, and it is not in line with the national increase in daily living costs130. This places a restriction on the possibility of a disabled person being able to live independently could create a dependant generation that never realises their full potential.131

Many disabled and neurodiverse people face barriers when accessing media that is not available in comprehensive versions. The absence of these much-needed diverse options leaves many disabled people unable to access essential information. The warning from the Royal National Institute of Blind People predicts that 4.1 million people will be affected by the loss of sight by the time 2050 is reached 132.

Structural recommendations that flow from this evidence are: Structural inaccessibility needs to be prevented; this can be done through rigorous legislation, with the hope of combatting

130

Office for National Statistics, Family spending in the UK: April 2018- March 2019, (2020) <https://www.ons.gov.uk/peoplepopulationandcommunity/personalandhouseholdfinances/expenditure/bulletins/ familyspendingintheuk/april2018tomarch2019#main-points>[Accessed 1 January 2021] 131 Adolf Ratzka, Independent Living for people with disabilities: from patient to citizen and customer.

(Independent Living Institute: 2007) < https://www.independentliving.org/docs7/ratzka20071022.html.> [Accessed 1 December 2020] (para. 6 of 32).

132 Royal National Institute for Blind People, 4.1 million people will be affected by sight loss in the UK by 2050, (2017) <https://www.rnib.org.uk/nb-online/eye-health-statistics.> [Accessed 30 November 2020] (para. 12 of 15)

39 the current attitude that is born from partial compliance. Geographical city planning must be made inclusive. Public transport needs to be upgraded to prevent the indignity that many disabled people face of struggling to access public transport; furthermore, one in four disabled people reported not using public transport due to the general public's negative behaviours133. The renovation of public transport would allow socialising opportunities for disabled people and would reduce the severe effects of systemic social abandonment, and the well-known impact on health that comes with loneliness and dependence. Many concerning injustices134 come from not holding employers to account for perpetuating the disability pay gap.135 Discrepancies in pay gaps between people with protected characteristics must be carefully monitored and heavily legislated against constructing a deterrent. There is an urgent need to personalise and simplify the welfare system136. Under the Marmot review recommendations, the most important element of any social change needs to be first and foremost the placement of fairness and social justice at the heart of a future welfare reinvention and budget allocations, (Fair society, healthy lives). It is shown that it will improve citizens' lives to the extent that life expectancy will rise, a well-recognised concrete measure of national health.

133

Shona Cobb, ‘For disabled people like me public transport is terrifying’ (Metro: 2019) <https://metro.co.uk/2019/09/03/disability-public-transport-wheelchair-trains-scope-travel-fair-10672475/> [Accessed 30 November 2020] 134 Scope, Today is Disability Pay Gap Day, (2020) < https://forum.scope.org.uk/discussion/74723/today-isdisability-pay-gap-day?_ga=2.243555904.439911009.1611576310-457723472.1610108501> [Accessed 28 January 2021] 135 Office for National Stastics, Disability pay gaps in the UK: 2018, (2019) <https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/datasets/rawpaygapsby disability> [Accessed 30 November 2020] (pp. 22- 22) 136 Noel Smith, Sue Middleton, Kate Ashton-Brooks, Lynne Cox, Barbara Dobson, and Lorna Reith, Disabled people's costs of living. (Joseph Rowntree Foundation: 2004) <https://www.jrf.org.uk/report/disabled-peoplescosts-living> [Accessed 28 January 2021]

40 “Put simply, if health has stopped improving it is a sign that society has stopped improving.”137 – Michael Marmot.

Fourth: Representation gives way to normalisation.

The media has a huge part to play in breaking down predisposed assumptions, and barriers to disability inclusion. There needs to be a shift of focus to the issue of representation, not merely the routinely scheduled representation displayed and only viewed in coalition with the Paralympic Games for example. Many disabled people report feelings of mental exhaustion, finding that through the need to perform and replicate able-bodied appearances to conceal their impairments to escape the stigma. 2020 is considered 'the digital age', and social media's role in providing equality must happen through representation and advertising diversity.

Representation gives way to normalisation. With more disabled people's achievements portrayed on television outside of sporting events or trends, this will allow the disabled community to challenge their own internalised disablism and will raise the expectations they set of themselves. Philomena Kwao is a black plus-sized model with an undergraduate degree in Economics and a Masters’ degree in International Health Management.138 She wrote on behalf of the national Eating Disorders Association;

“I believe true diversity occurs when brand completely and honestly shows all types of people regardless of size, race, gender, or ability. It really must be relatable and accessible.

We will no longer be sold dreams and aspirations, but we will learn to love and appreciate

137

Michael Marmot, Jessica Allen, Tammy Boyce, Peter Goldblatt and Joana Morrison, Health equity in England: The Marmot Review 10 years on. [Accessed 28 January 2021] (pp. 3-5).

138 Philomena Kwao, ABOUT, Philomena Kwao, [n.d.] <https://www.philomenakwao.com/about.> [Accessed 19 January 2021] (para. 2 of 4).

41 who we are individually and celebrate the differences amongst us. {…} let’s keep having these discussions with advertisers, content creators and us, the consumers of media so that we move towards a world where our feelings of self-worth are no longer dictated by the standards of someone else” 139.

To conclude these recommendations, there is one vital and powerful concept that has appeared consistently throughout this research: The Social Model of disability. Professional recognition of this model is inexplicably vital in communicating its empowering message.

The model makes it clear that the challenges and barriers disabled people face are not their fault but stem from the disabling barriers. The model shifts focus and accountability back to the legislators who perpetuate disablism by not applying the significant body of research evidence when creating legislation. It is imperative that populations realise that current legislation and their design of the world has created impassable obstacles for people with impairments:

“49% of non-disabled people feel that they do not have anything in common with disabled people and 26% admit to avoiding engaging in conversation with a disabled person140.”

139

Philomena Kwao, ‘The Importance of Diverse Media Representation’. (National Eating Disorders Association blog: 2019) < https://www.nationaleatingdisorders.org/blog/importance-diverse-mediarepresentation.> [Accessed 30 November 2020] (para. 8/9 of 9).

140 Sense, Loneliness, [n.d.] <https://www.sense.org.uk/support-us/campaigns/loneliness/> [Accessed 30 November 2020] (pp. 5 of 13).

42

Conclusion

I would like to close this essay with a reflection of the research, and an acknowledgment of the limitations involved. I believe that it is essential, though shocking, to recognise the origins of our societal fascination with the ‘norm’. Eugenics sought to eradicate the people we have now legally protected, but these people are still an ‘out-group’, as explained within social identity theory in chapter one. Throughout this essay, it has felt important to look at the most prominent factors that contribute to inequality and disablism, rather than focusing specifically on each protected characteristic which will undoubtably have specific inequality elements. However, it must be acknowledged that there are absent positions which are beyond the reach of an essay of this length.

I trust that the average person would not say they discriminate against disabled people.

Nevertheless, the statistics are there; the imposition of legislation that will hurt the disabled population most is still rife. The UK government chose to action the WCA policy, and it was directly linked to disabled people taking their own lives. Specific public attitudes promoting segregated environments are ever present. I believe that our society has become too attached to ‘seeing is believing’ and in a twenty first century world of immersive media heavy with fake news, it seems to me that keeping public arenas inaccessible and therefore cleansed of disabled people is silencing disability. Limiting the general public’s exposure to disability perpetuates stigma. However, the Equality and Human rights Commission will not stop publishing reports, which collate shocking statistics. These challenges and blockades which society has placed on disabled people will not be resolved without government acknowledgment. Without intervention, more disabled children, teenagers and adults will

43 definitively suffer. Nevertheless, there is hope, where institutions fail, and impaired individuals are not permitted in public arenas the media can be utilised. As long as disabled people have access to social media, activists such as, Liam O'Dell, Jess Caron and Amy Kavanagh will maintain their voices and their platforms, informing and re-educating where systems fail. Charities such as Scope will continue to campaign with the disabled people they represent. There are 14.1million disabled people and they cannot be perpetually overlooked by society.

Impairments and disability can and will happen to anyone, just as we don’t choose how or where we are born. Disability is a lottery, but health and equality should not be.

44 Appendix A:

Transcript of film: 'What is the Social Model of disability?'

Scope, Social model, Online video, YouTube, 19 October 2018 <https://www.youtube.com/watch?v=3m_EbRH1aF4&feature=emb_title > [Accessed 12 January 2021]

Ossie Stuart (Disability consultant): I always felt being a disabled person was a problem.

After learning about the social model, it challenged me to look at disability completely differently. I myself was able to gain some confidence and... self-esteem.

Ian Macrae (Editor, Disability Now): The social model basically says, we are people with impairments and those impairments clearly have an impact on how we live our lives. But the impairments are not the things which disable us.

Mik Scarlet (Broadcaster and journalist): I'm disabled by the world around me and if the world was more accessible, I would be less disabled and then I would just be left with my "impairment" i.e. what doesn't work.

It's not that my legs don't work that disabling me. It's the fact that if I'm on a flat surface, I can wheel around fine, I'm wonderfully happy. It's only when I come up to a flight of stairs.

Alice Maynard (Chair 2008-2014, Scope): As a wheelchair user, you have a slightly easier job of explaining the social model. Whereas if you're trying to explain the less physical barriers, it's much harder.

Laurence Clark (Comedian and writer): There's barriers everywhere in life. It's to do with how communicate, to do with people's attitudes...

45 Kiruna Stamell (Actress): Discovering the social model was a massive liberation on another level. Yeah I was being treated differently and no it wasn't me being deficient. It was everybody else's social anxieties being projected onto me.

Laurence: The blame for you not fitting in is no longer on your shoulders.

Ian: Suddenly my disability was out there and not in here. It was what made me realise that I was something beyond the thing that other people thought I was Mik: It's a really liberating thing, but it also means you can change it. We can say to the world, "Look, you must put a lift in this building. You must make sure that the signage is readable for people with visual impairments."

Kiruna: If you want that equality to be real, you've really got to tackle the inequality people are experiencing in schools, workplaces, transport.

Ian: The main reason that the social model, I think, is important to disabled people is that it allows us to be a community. You achieve a whole lot more as a group.

Mik: As long as we, as disabled people, make sure that our voices are heard and that all those people that support us also have their voices heard, then I think we will get there.

Alice: I hope that Scope is doing work that will help disabled people to become prouder of who we are. Pushing boundaries around who can be included and where.

Laurence: Come the glorious day if it ever came where all the barriers went, y'know. We'd just be people with impairments. We wouldn't be disabled people any more.

46 Appendix B: additional reading.

Scope, Disability facts and figures, (London) [n.d.] <https://www.scope.org.uk/aboutus/impact-report/the-story-so-far/>

Scope, Disability facts and figures, (London) [n.d.] <https://www.scope.org.uk/media/disability-facts-figures/ >

The University of Alabama at Birmingham, Violent Ableism: A Structural Epidemic. (2019) <https://sites.uab.edu/humanrights/2019/04/17/violent-ableism-a-structural-epidemic/>

Haroon Siddique, EHRC undermined by pressure to support No 10 agenda, says ex-chair, (2021) < http://www.theguardian.com/society/2021/jan/18/ehrc-undermined-pressuresupport-no-10-agenda-david-isaac>

BBC: Disabled people 'left behind in society', report finds, (2017) <https://www.bbc.co.uk/news/uk-39458672>

The Ouch Team: Choices and rights: The story of the Disability Discrimination Act, (2015) <https://www.bbc.co.uk/news/blogs-ouch-34726494>

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