Archer Magazine #16 - the DISABILITIES issue (Dec 2021)

ISSUE Nº 16

A MAGAZINE ABOUT SEX, GENDER AND IDENTITY

DISABILITIES ISSUE KINK + MENTAL HEALTH • NEURODIVERGENCE • QUEER + DISABLED DEAFNESS • MEDICAL RACISM • DISORDER + DIAGNOSIS • SEX WORK COVID-19 LOCKDOWNS • PARENTING + BIPOLAR • INSTITUTIONAL ABUSE

+ Q&A WITH ELVIN LAM

It’s going to take all of us that can get vaccinated, to protect the most vulnerable in our community.

switchboard.org.au

Contents

issue Nº 16

PAGE.10 Q&A with ELVIN LAM: JASMINE SHIRREFS p.16 Peer work: Is Hay

p.22 Institutional abuse: Jane Rosengrave

PAGE.26 Photography series by FRANCES BUKOVSKY p.44 Loneliness and Covid-19: Beau Windon p.50 Gender and madness: Nicole Lee p.56 Always the ‘ally’: Chloe Sargeant p.62 Perfection in elite sport: Isis Holt

PAGE.68 Image series by NICOLE WHEAT

p.80 Finding freedom in sex work: Maybe Leigh p.86 Collective liberation: Julia Rose Bak

p.92 Dissociative identity disorder: Patrick Gunasekera PAGE.98 DESIRE + DISABILITY portrait series p.116 Reparenting: Rose Broadway

p.120 Medical racism: Tuesday Atzinger PAGE.96

p.126 Parenting and disability: Emily Dash p.132 Asexuality and disability: Giselle

p.138 A bipolar diagnosis and a marriage: KJ

p.144 Kink and mental health: Murray Turner-Jones

FOUNDER + PUBLISHER Amy Middleton EDITOR-IN-CHIEF Roz Bellamy CREATIVE DIRECTOR + DIGITAL DESIGN SPECIALIST Alexis Desaulniers-Lea LAYOUT DESIGNER Christopher Boševski SUB-EDITOR Greta Parry IMAGE ASSISTANT Hailey Moroney ONLINE EDITOR EK Lewis DEPUTY ONLINE EDITOR Dani Leever EVENTS CO-ORDINATOR Dani Weber

COVER IMAGE: Nelly Skoufatoglou COVER MODEL: Gemma Adby Visit us online: www.archermagazine.com.au For advertising and other enquiries: info@archermagazine.com.au HUGE THANKS TO: Karen Field, Ali Hogg, Nerida Nettelback, Nigel Quirk, Jasper Peach, Jax Jacki-Brown, Pauline Vetuna, CB Mako, Gem Mahadeo, Hannah Morphy-Walsh, Carly Findlay, Jamali Bowden, Rachel Chapman, Tracey O’Donnell, Lora Popescu, James Little, Jess Desaulniers-Lea and the healthcare workers around the world who have cared for all of us during this pandemic.

The Archer Magazine team extends our enormous gratitude to Drummond Street Services and its Board for supporting the publication in myriad ways, and allowing us to continue to platform lesser-heard voices. We love you.

We acknowledge the Traditional Owners and Custodians of the land that we live and work on, and pay respect to their Elders past and present.

Printed in Australia by Printgraphics Pty Ltd. © 2021. All rights reserved.

No part of this publication may be reproduced without permission from the publisher. Views expressed in Archer Magazine are those of the respective contributors and not necessarily shared by Archer Magazine.

Archer Magazine is presented in partnership with Drummond Street Services.

This publication is supported by the Victorian Government through Creative Victoria.

IT HAS BEEN SUCH AN HONOUR to come on board as editor-in-chief just in time for Archer Magazine’s first disabilities issue. It has been very meaningful for me personally; I live with mental illness and I had a chronic health condition in my twenties. In the past, I wasn’t sure if I could identify as disabled, despite having conditions and, at times, severe symptoms that affected my work, studies and relationships. It has taken time, therapy, writing about mental illness and editing other people’s writing to reach a place where I describe myself as disabled. I use the word proudly and joyously, and I’m so grateful to past and current disability activists who do such crucial work.

While we’ve called Issue 16 the disabilities issue, we’ve included contributors who are neurodivergent, mentally ill, chronically ill and/or D/deaf, some of whom may not consider themselves disabled. There’s an incredible diversity in the way the contributors use language about themselves, their identities and their bodies. In the opening piece, writer Jasmine Shirrefs interviews dancer Elvin Lam, and Lam notes that he has a number of identities, but “Number one, my identity is Deaf.”

Chloe Sargeant writes about the experience of being perceived as an ally in the queer and disabled communities rather than as a member: “It pierces me, being told over and over, even by people within the communities themselves, that I am once again an outsider looking in”.

The power of collective action, activism and advocacy is evident throughout this issue. Jane Rosengrave writes about her experiences with institutional abuse, speaking out at two Royal Commissions and supporting others to share their experiences.

Julia Rose Bak explains why disability justice is so crucial for our collective liberation, describing a disability justice movement community in which “we could love, care for, hold and strengthen one another”.

We couldn’t publish this issue without delving into the disproportionate impact Covid-19 has had on people with disabilities.

Beau Windon’s piece explores social isolation and loneliness in relation to obsessive compulsive disorder and autism spectrum disorder, critiquing the focus from politicians and mainstream media on reopening and getting everything back to ‘normal’, thereby forgetting or ignoring those who are excluded from society, or who face systemic barriers. Tuesday Atzinger’s searing piece about medical racism looks at the vaccine rollout and the language used around ‘underlying conditions’ and triaging in the pandemic, asking: “If things do escalate, if I end up in ICU triage, would my Black, queer, chronically ill, disabled body demonstrate ‘recovery potential’? Would I be worthy of treatment?”

Something that struck me early in the editing process for this issue was the thoughtfulness and generosity with which the contributors shared their lives, experiences and insights. Each contributor considered the readers of this issue with love and care, always putting accessibility at the forefront when it came to their writing or artistic style, and in the sensitive ways they wrote about challenging content.

Photo by: RACHEL CHAPMAN

Editor’s note

Likewise, it was important for us as publishers to respect the contributors’ voices. Editorial standards and style guides are often very abled and don’t leave room for diversity of expression, particularly for disabled and neurodivergent writers. While all of the pieces have been edited for consistency, some diverge from our usual narrative non-fiction style at the writer’s request. Some pieces aren’t linear: there may be multiple threads, sometimes parallel and overlapping, that may converge at a crucial point.

Maybe Leigh captures this beautifully: “Neurodiverse people, especially undiagnosed ones, lead double lives. The nature of masking, dissociation and mental illness makes reality unreliable.” Meanwhile, in Rose Broadway’s compelling piece about ‘reparenting’ herself while parenting children, she questions the notion of bipolar as a disorder, and invites readers to view it as a perspective through which people experience the world.

I like the idea of recasting disorders and other stigmatised conditions as a set of perspectives. In Issue 16, you will experience a wide range of perspectives. The theme of disability and desire is explored in a gorgeous photographic series and in pieces about sex, sex work and kink, while Giselle’s piece about asexuality reminds us that while most person with disabilities are not asexual, some are.

I’m so proud of this issue and I hope you find something in the diverse array of stories, artworks and design that you connect with. I couldn’t have worked with a more supportive team, who burst with ideas, creativity and spark. I’m so grateful for the incredible work from our design and images team – Alexis Desaulniers-Lea, Christopher Boševski and Hailey Moroney – and for the editorial guidance from guest editor Jasper Peach, advisors Jax Jacki Brown and the Disabled QBIPOC Collective, sub-editor Greta Parry and publisher Amy Middleton. I also greatly appreciate Carly Findlay’s input and support.

Roz has been on Archer Magazine’s online team since 2018.

They are in the final months of a PhD that explores the experiences of young LGBTQ+ people engaging in life writing. Roz’s memoir, MOOD, is forthcoming with Wakefield Press in 2022.

Roz Bellamy Editor-in-chief

CARMEN BUNTING Photography

Guest editor Warmest welcome to this exquisite collection, Archer readers. Being able to guest co-edit the disabilities issue came at a brilliant time in terms of intensity and intersectionality in my life. The last two years have created pressure that cracked me open to reveal parts of myself that I never knew existed. And out they flew; my name, pronouns, identity and career trajectory all changed at the ripe old age of 40.

Thank goodness for that.

Working with the Archer team is an experience of belonging unlike any other. In the midst of my own transition and finding my identity, I was always addressed with the right pronouns and name (even though they changed a few times during the months we were bringing this issue together). Knowing the safety of being seen was incredibly grounding. Archer is about respect, inclusion and the valuing of our stories. I hope you hold this magazine and feel the weight of it – the delicious delving into honesty and light along with the thornier complexities of our everyday reality that the wider non-disabled community aren’t necessarily aware of. The disabilities issue offers presence and representation of as many carefully curated words as we could gather. I hope you enjoy absorbing these multi-layered perspectives as much as we loved creating it for you.

JASPER PEACH is a writer, civil celebrant, broadcaster, editor and general connector of people and stories. They have written for Archer Magazine, SBS Voices, and the forthcoming Black Inc. collection We’ve Got This: Stories by Disabled Parents, edited by Eliza Hull.

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Photo by: ANNE STANDEN

Photo by: WĀNI

Advisors

Advisors

JAX JACKI BROWN (they/them) is a disability and LGBTIQA+ rights activist, writer, and educator. Jax has written for Junkee, Daily Life, The Feminist Observer, Writers Victoria, ABC’s Ramp Up, Hot Chicks With Big Brains and Archer Magazine. Jax is published in the following anthologies: Queer Disability Anthology (2015), QueerStories: Reflections on Lives Well Lived from Some of Australia’s Finest LGBTIQA+ Writers (2018), Kindred: 12 Queer #LoveOzYA Stories (2019), Growing up Queer in Australia (2019) and the forthcoming We’ve Got This: Stories by Disabled Parents (2022). Jax is interested in how we can build resilience, pride and community for people with disabilities.

The Disabled QBIPOC Collective reside across Kulin Nation lands and consists of CB MAKO (cubbie/ they/them), GEM MAHADEO (they/them), HANNAH MORPHY-WALSH (any pronouns) and PAULINE VETUNA (she/they). They are a group of writers interested in supporting each other and working together to advocate for greater accessibility for writers who live at the intersection of queerness, disability, and being Black, Indigenous or People of Colour, within the arts and writing sectors.

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ELVIN Q&A with JASMINE SHIRREFS Image: SOPHIA BENDER

Elvin Lam is a Deaf dancer based in Melbourne. Born in Hong Kong, Elvin moved to Melbourne two decades ago to study at university and embrace his queer identity. Before Elvin strapped on his first pair of dancing shoes in his teenage years, he had trained and competed in figure skating for 10 years. Elvin caught up with Jasmine Shirrefs to discuss deafness, dancing and how the pandemic has changed the way he moves and connects with audiences.

LAM

I met Elvin over Zoom, with notetaker Thomas and Auslan interpreter Kirri. Our interpreter Kirri was held back at their previous job, which was unsurprising – Australia has had an interpreter shortage since the 1970s.

Elvin and I chatted briefly in Auslan about plodding along in the pandemic. He asked why I wouldn’t conduct the interview in Auslan, and I explained I had never studied translation and I was aware I needed to get the text into English instead of multimodal communication.

I kept looking at everyone’s little faces on the screen, at their homes and their furniture, and thinking about how bedrooms have become the new office.

Note: The medical condition of varied hearing range is referred to as ‘deafness’. We will utilise ‘Deaf’ with a capital to denote the linguistic and cultural group of Deaf people. We recognise that there is a spectrum of identities across those with deafness.

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JASMINE SHIRREFS. This issue of Archer Magazine focuses on disabilities. I’m wondering if you identify as disabled.

ELVIN LAM. I have a few different identities. Number one, my identity is Deaf. A lot of our community think that deafness is different to identifying as having a disability – it’s a culture and distinct identity.

JS. How has the pandemic changed your relationship to space? What does it mean to be a dancer without a physical space to rehearse and perform? What does it mean to be Deaf and for your language, Auslan, to lose a dimension?

EL. I need to think about where my body is within space and how can I move while remaining on screen. I need to keep looking straight forward and it can be hard to maintain eye contact.

With performance, trying to gauge how the audience is feeling is quite hard. Sometimes they sit up very close to the screen and ogle a little and it’s difficult to understand. I feel as though the camera is the audience. We are performing for the little circle at the top of the computer.

As a Deaf person, movement is such a huge part of my life. I guess I’ve needed to explore more about how dance is connected to Deafness, and how dance is connected to body language.

JS. Do you find it hard to date as a Deaf and queer man?

EL. It is difficult because the Deaf community is very small, and then if we think about the Deaf queer community, that is even smaller. So it is hard to find someone, because we already know each other. Being around each other, we do feel safer, but there are very few of us.

Before I met my partner, I was dating online. I always disclosed that I’m a Deaf person, which helped to filter through people who have genuine interest and a good attitude. It means I met people who were more willing to work together on the language barrier rather than just me always putting the first foot forward.

Including deafness in my profile has aided me.

JS.How do you connect to music?

EL. I think every Deaf or hard-ofhearing individual connects to music differently. In ballet training, I can feel the music and connect with its heaviness or lightness. Contemporary can be a little more difficult. We can feel the bass at a loud volume but perhaps not the intended feeling of the music itself.

Through dance, I always follow my own gut instinct, I follow my own memories, my own thoughts of what the dance is, what the movement is and what that means to me. The music is in my mind. It’s like the dance is showing the feeling and movement to me.

There’s a musicality in that, whether I’m moving slowly or fast or showing an emotion that is attached to that.

Movement can be my music.

JS. Do you have a subwoofer? I wonder if the National Disability Insurance Scheme (NDIS) would allow that.

EL. I wish. I can’t do that – I don’t want the neighbours to complain.

JS. Have you ever worked with someone to design your own music?

EL. Yes, a while ago I was in a group called Deaf Can Dance and we had a

music piece that was developed by a hard-of-hearing DJ, which followed our movements as dancers.

I was also part of The Delta Project’s Under My Skin. The Delta Project was co-founded in 2012 by Deaf dance artists Jo Dunbar and Anna Seymour with support from Arts Access Victoria (Seymour is the current Artistic Director). In Under My Skin, the music was created specifically for us. The delta is a visual and physical metaphor for Deaf and hearing worlds merging together, and The Delta Project built from this momentum to experiment and create works that explored hidden stories and voices, and encouraged new dialogues and connections to emerge in dance and performance. Under My Skin had sounds as well as projections. There were various colours and lights that notated the music. This was perfect for audience members to get a full sensory experience of the music involved in our piece.

JS. I feel that storytelling is important in Deaf culture because we don’t have the same access to archives as some mainstream populations. Often a lot of the technologies to capture video phase out quite quickly. Do you think dancing is a form of storytelling that can be used to capture history?

EL. With ballet, it does not matter if you are hearing or Deaf. The story unfolds through the dancers’ movement and gestures. I think the combination of the body in movement and the facial expressions helps to create meaning in dance. Facial expressions or non-manual features are an integral part of Auslan and my identity as a Deaf person, and this helps me to relay meaning to the audience in my own performances. Different speeds of dance can assist in conveying emotion. If I am trying to convey sadness, I may slowly dance with heaviness. When I am trying to convey happiness, I may dance faster and lighter. I think with ballet, both hearing and Deaf audiences have the opportunity to understand the emotions. I feel contemporary dance is very much connected to emotion, and emotion can be quite connected to history and memory.

Under My Skin (with Anna Seymour, an incredible Deaf dancer) involved a lot

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of initial research about how emotions are projected. The piece was really open, honest and direct. It was about unpacking the expression of raw emotions and the times we felt we needed to suppress and mask our emotions. I think in the 1980s there was some discomfort and embarrassment involved with someone presenting their emotions, and this has changed over time.

JS. What is it about ballet particularly that draws you?

EL. I’ve tried other dance genres: I’ve tried hip hop, jazz, contemporary. I enjoy all forms of dance, but ballet is something special and beautiful. It shows a story without talking. When I was younger my mum went with me to watch a ballet performance, The Nutcracker. Before seeing ballet, I was always really frustrated with various performances because people would be standing there singing and I would have no idea what they were talking about. I couldn’t follow the story, there were no interpreters – it just wasn’t accessible to me.

Image: ALEXIS DESAULNIERS-LEA

“…the Deaf community is very small, and then if we think about the Deaf queer community, that is even smaller”

JS. For a while there I think opera was my favourite performance to go and see because they had captions when it was sung in a language other than English.

EL. That’s right, absolutely. Also, foreign films always have captions. Open captions, not just closed; much better.

JS. CaptiView is a nightmare.

EL. So frustrating. The captions often don’t work, and you can’t tell who is speaking or understand how it syncs with events on screen.

Sometimes when I watch theatre and there’s an interpreter on the stage, I just sit and watch the interpreters and I forget about the performance. I miss out on the performance because I’m trying to get the information.

JS. That’s why I like when the interpreter is embedded at all stages of production. Did you see Sam I Am? Sam Martin and Danni Wright were passing language between each other, there was Auslan, captioning and oral English, and it was almost like it didn’t matter what language you were using – you could take in a little bit of everything, and it would create a full story.

EL. I would really love to do something like that in the future.

JS. What projects are you working on at the moment?

EL. I am doing a performance called Face to Face at Midsumma Festival, which is produced by Melody Shotade.

I also have seen an increase in online courses during the pandemic; however, not many are accessible owing to no closed captioning. I think I would like to develop a Deaf-led online dancing course that could be attended by a variety of people across Australia.

JS. How are you feeling about the possibilities of arts in the digital space?

EL. I think the presence of interpreters and captioning on screen has really changed access for the Deaf and hardof-hearing community, and I am hoping this is ongoing.

I am currently following a group of Deaf drag queens in America. There’s also a troupe of Deaf drag queens in England, Taiwan, China – various troupes all around the world. Social media has made Deaf artists and Deaf communities be able to connect regardless of where we are in the world. I think digital spaces are showing us that Deaf people can do a variety of arts mediums and with great professionalism.

Recently I was involved with Flow Festival, which was curated by a group of Deaf community members, but the festival was inclusive of different identities, whether they be queer or straight, disabled or not, Deaf or hearing. I think everyone should be able to move through the world as they are. I think there is a future where festivals like Flow can involve a global Deaf community. Everyone coming together to create something wonderful.

JS.I can’t wait to see what you get up to next, Elvin. Thanks so much for chatting with me.

Elvin, the access team and I all signed many thanks to one another – taking the hand with fingers straight and gelled together to the chin, then pulling the hand away.

JASMINE SHIRREFS is a zine-maker, freelance writer and multidisciplinary artist. Jas has written for Growing Up Disabled in Australia released by Black Inc. in 2021. They did a lifewriting column for Scum Mag in 2020 and are currently working on a long form non-fiction manuscript about community, identity and shared living arrangements. Jas identifies as queer and Deaf.

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WHEN PRIDE BECOME EXHAUST Words: IS HAY Images: KATIE K DAVIS

S TING Peer work is important and affirming but has a cost.

I AM A PROUD disabled, queer, trans and mad1 young person, but when I am required to be the ‘good one’ – a palatable and productive version of each of these aspects of my identity – just to be able to pay my rent, pride becomes exhausting.

Working with my communities to help my people feel welcome, loved, represented and, most importantly, safe, is a great privilege. I am a peer worker, facilitator, program assistant and presenter in the youth, disability and mental health spaces. I feel honoured that I get to spend each day actively making the world a kinder, more inclusive and accessible place for people like me.

Despite knowing that the work I do is affirming and that it makes a difference – the one thing I always wanted to do when I grew up – I can’t help but feel like I have less and less fuel to run on.

Lots of the work I do was absent from the job ads. There wasn’t a position description stating that prospective employees would be expected: • To provide constant emotional vulnerability with little to no recognition • To be seen as representative for entire communities • To have all the knowledge about your communities, and be okay with us to relying on you for that instead of working to understand it ourselves • Not to complain about regular misgendering and behaviours that are demeaning, dismissive and bigoted.

Am I respected because I am a good, caring, dedicated employee or because the way in which I have sculpted the presentation of my identities in an employment environment is productive to their business model? What if it’s both?

I certainly don’t hate my jobs. In fact, I love knowing I am able to work at all, especially in a field that is all about serving my communities.

WHEN I WAS 15, working in fast food, I received a “do u want 2 quit” message after disclosing I was receiving 1.

2.

hospital treatment. I wept, thinking I would never be able to work again.

It wasn’t that I was particularly keen on capitalism, but it felt like no matter how hard I tried, I wouldn’t be given the chance to support myself, even in a system I already hated. This framed my lived experience as a liability, one that was my fault and couldn’t be changed, something I internalised and had to challenge when applying for community sector jobs.

I certainly didn’t believe I was qualified to do peer work, and years of being told I wasn’t allowed to take up space as a complex person meant I didn’t value my lived experience as expertise.

I even asked, in a job interview, if one of my conditions counted as a disability, scared I wasn’t allowed to exist in this cool and welcoming world.

Now, years into that job, and others in similar sectors, I am still unsure of myself. While I know my experiences and identities are valued, wrapping my head around why they are so important leaves me feeling insecure. Existing in this space of uncertainty would be draining on its own, but I feel further depleted after educating cisgender, straight, abled2 people on why my people should matter (all in a 30-minute Zoom call).

That this work occurs within a capitalist system makes handling the complexities much more challenging.

I find it distressing that the only way my delicate socialist ‘snowflake’ self can earn an income and participate in broader society involves exploiting my own identities.

Each day, as I log on to work, I feel I am complicit in the oppression of my own people; that having to mellow myself to fight the system from the inside is corrupting our revolution.

IN MY IDEAL world, I wouldn’t need to work at all. In my dream society, marginalised and oppressed peoples, including myself, are plotting. So that our needs are not only met but affirmed, so that peer workers aren’t necessary, because nothing will be about us, without us.

‘Mad’ is a term that has been reclaimed by some people who identify as mentally ill, psychiatric survivors, consumers, service users, patients, neurodiverse and disabled.

‘Abled’ means non-disabled.

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In the real, non-ideal world, I feel guilt for appreciating the comfort that my income gives me, and shame for maintaining the status quo.

Of course, this is how capitalism prevails: by making those of us upset with the system so reliant on it that overthrowing it doesn’t seem possible, and by doing to us what we try to do to it – take it down from the inside.

My internalisation of society’s messaging further complicates my relationship with my work, in a way I don’t see a resolution to. That being said, my favourite part of working in peer spaces is getting to engage with other people like me. Whether it is with trans people in recovery from eating disorders, disabled people of marginalised genders in leadership, mad people sharing mad studies or young disabled people informing the government on policy, I feel at home in the work.

Knowing that my skills, my passion, my time and my power are actively contributing to making other people’s lives better – on systemic and personal levels – feels surreal.

Connecting with my communities, and subtly or explicitly telling them that I care about them, that their ideas and existence matter and that I promise to keep them safe with me, is what makes it all worth it.

This affirmation is complicated by what working with ‘your people’ actually looks like: immediate strong connections, a level of understanding that others don’t have, and a sense of pride and protection. Professional and personal lines often blur, and heartbreaking ‘nos’ to vulnerable requests for friendship must become second nature.

This feels like we are saying no to our communities our people, ourselves. We feel like we are denying their safe space, in us. It hurts, for them and for us.

When your work is more than just a way to pay the bills, and is also a fight for your rights to be met, the average toils of a workplace can burn that much hotter. Common setbacks like not getting a grant application or having a bad day become reflections of ourselves, our identities and our communities. A weird interact-ion with a colleague

can feel like evidence of an inability to function within the system and to create allies. Being able to separate work and life becomes almost impossible. Taking annual leave isn’t just a day off, but a choice to deny our communities what they need so we can have seemingly trivial leisure.

PEER WORK can be overwhelmingly frustrating, without no obvious relief. But there are ways to manage this, hard as they may be.

Firstly, we must take breaks. This tip is utter hypocrisy as in my years of peer work, I am yet to take a break.

Of course, the reason so many of us don’t is because our work feels (is) so important, and stepping away aches like we are letting down our communities.

Knowing the ethos of a peer worker, however, guilting ourselves into action might work. So perhaps we should try manipulating ourselves into rest by knowing that not taking time for ourselves is also letting down our communities and defying the tireless work of unions.

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Next, we must recognise that our labour, time and experiences are inherently valuable. They are assets that others have to earn. People aren’t entitled to us just because they have decided to use us instead of Google.

It is a privilege, not a right, for others to have access to our lived experience.

Know your worth. Practise saying no.

Another tip that feels selfish, but isn’t, is to find safe spaces, just for us. We deserve settings that are made for us, so we can explore how heavy and exhausting everything feels. We don’t have to scream into a void about this alone (though that is quite fun).

There are others – maybe those in similar roles, or maybe just those who care about you – that you should give yourself permission to vent to. You might even be able to rope allies into validating and listening to you.

Finally, know that it is not your responsibility to fix the entire world just because no-one else is doing it. There is power and relief in realising we are not the chosen one, the prophecy-declared person set to rid the earth of pain. We can contribute, we can collectivise, we can empower, but we can’t – and shouldn’t – be expected to fix.

I AM NOT the only person feeling these things, attempting to do revolutionary work in inherently reformist spaces. I reached out to Benjamin Coggins (he/him), a mad peer worker and neurodiverse anti-binary revolutionary change facilitator, to explore the nuances of this work.

He describes peer work as a collective, where “we’re responsible, [but] we’re not solely responsible” for making the world better. When supporting our peers, it “all comes organically out of the ground-ations” – ground rules and foundations – stemming from the innate needs of our communities.

This grounding of our work as being determined by us and for us is crucial. When we recognise that we are not that powerful or important, we enable a clear motivator for collective approaches to systemic change, all while dismantling oppressive understandings of power.

Coggins notes that in using peer work to enact change, we need a motivator: someone or something making our

work necessary. “Recognis[e] that villains play a really important role in change. We can’t change if we don’t have villains, because villains catalyse our own understanding of what needs to be done.” As such, our “emotionally grounded understanding” as peer workers comes from these villains (read: oppressors).

Therefore, in order to ensure our practice as workers in our communities is responsive to the needs of our people, especially mad folks, Coggins believes we must have “no expectations, no attachments, no fear, no projections”.

No expectations about what we need or can do, no attachments to structures that hold us, no fear in entering the unknown, and no projections of our anxieties into a future. This can feel like an insurmountable pressure put on us just because of our lived experience.

While it is exhausting, breaking our work down to what it is enables clearer and more effective change.

Fundamentally, supporting ourselves, supporting our people, and inadvertently supporting society to be better “can be simplified to one rule actually, which isn’t even a rule but an

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avoidance of a paradox: don’t undermine the conditions of your existence”.

In order to do this, we must value ourselves, our work and our people, and know that existing in peer roles is showing other mad, disabled and otherwise marginalised peoples that we are here, working for the change they need.

WHILE THIS ALL feels like a lot of words to essentially say “I’m tired”, a characterisation that isn’t entirely unfair, this is all too familiar for so many of us. Exhaustion can be the default when using all of our energy to be ourselves loud enough to stop others forgetting, ignoring and devaluing our communities.

Despite this, I will never stop being proud of my assumed messy, complicated and exhausting existence, though having to hide as much of the mishmash and fatigue as I can to ensure I continue to get paid feels unsustainable. People seem to want every last bit of a very specific and more palatable version of me, in order to say they have listened and will do better.

While a revolution would change this, for now my pride is an act of defiance.

IS HAY (they/them) is a disabled, queer, trans and mad young person living, loving and working on stolen Wurundjeri Woiwurrung land. They work in the youth, disability and mental health spaces, and are a passionate and angsty writer. Outside of capitalism you can find them cuddling cats, plotting the revolution and posting on Instagram.

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FLYING Words: JANE ROSENGRAVE Images: JESSICA TREMP

FREE There is a path, however long and arduous, from sexual and physical abuse to freedom.

MY NAME IS Jane Rosengrave.

I have an intellectual disability and I am a strong, powerful self-advocate. I am a proud Indigenous person from the Yorta Yorta tribe, and am an Aunty as well.

I currently live in a unit by myself and pay rent using my disability pension. I have a support worker who assists me with things like organising medical appointments. I got to choose the support worker.

In my free time I like to do dot painting, crocheting and knitting. I enjoy watching cricket and football. I like living in my home and I feel free.

I LIVED IN institutions from the age of six months, in conditions that were like jail. I was put in an institution because I had epileptic fits and also because I am Aboriginal, which I didn’t know at the time.

I was sent to Pleasant Creek institution from an orphanage at the age of five.

I’d been at the orphanage from when I was six months old as part of their baby program. Pleasant Creek was a large institution, which had many residents of all ages.

Over all the years I was incarcerated, from early in my life, as a baby, until I turned 21, I experienced sexual and physical abuse and emotional torment from more than one perpetrator.

When I was young, we went to Marlborough House – a place for those in the Pleasant Creek institution who didn’t have family – for a bit of a holiday. I was sexually abused when I was six years old

by a worker there who warned me not to tell anyone about it. I was scared, so I didn’t say anything for many years.

One weekend, when I was 13 years old, I was abused again by one of the workers who took us swimming. I loved going swimming and he threatened that I would never get to go again if I didn’t go along with what he wanted.

The worker who assaulted me was in a high position at the institution, and this happened in his office.

I was again sexually abused when I was a vulnerable girl of 16 years. The bus driver who drove us to church on Sundays would sexually abuse me when I worked at the milk bar Friday and Saturday, and also on the bus on Sundays after church.

I didn’t tell anyone about the abuse at the time because I felt, based on my experiences living at institutions my whole life, that no-one would believe me.

This man continued to abuse me for three years. The rapes were very violent and I was scared for my life while they were happening, but the threats were such that I was too scared to say anything.

I would cry my eyes out when I returned to the institution. I would just say that I was tired so I wouldn’t get into trouble. This abuse still affects me – I have trouble riding in buses. It was very traumatic.

At 17, I moved into a Community Residential Unit (CRU). The CRUs were small homes for five or six residents. Pleasant Creek ran several CRUs, which were independent living

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options for adults. CRUs were started as a transitional housing option for people with intellectual disabilities who needed one-on-one support 24-7 in community living. This allowed them to fit more residents into the institution.

CRUs are now called Specialist Disability Accommodation (SDA).

I chose to go to church every Sunday. When we were at church, those of us from the institution and CRU were kept separate from everyone else. They would do this by leaving empty rows between us and the rest of the community. This made us feel like animals in a zoo, and not part of our community.

When I was living at the CRU, I felt that my rights were not considered at all. I had a key to the house, but I had to request permission from staff if I wanted to go on outings for the day.

There was no privacy. I had some of my personal items stolen because there were no locks on the doors. When I raised this with the staff, I was told not to talk about it.

There were a lot of rules in the CRU. It felt like a mini institution. We had weekly rosters, which allocated chores to each resident. At our weekly meetings we also decided on a menu for the week.

One of the jobs would be to go to the local shops to do the grocery shopping.

If I did something ‘wrong’, or if I had a fit due to my medical condition, I was sent back to the Pleasant Creek institution from the CRU. It was a form of punishment because the staff considered my fits to be a way of

getting out of my duties. This happened frequently. Other residents were also sent back to Pleasant Creek as a form of punishment for lots of different reasons.

I remember being sent back to Pleasant Creek after having a fit in the bath. They punished me for any fit I may have had – I was deprived of food and drink and never got to see a doctor about my epilepsy.

Any doctors I did get to see told me off for my behaviour – they weren’t interested in helping me.

The longest I was forced to stay at Pleasant Creek as a form of punishment for a fit was two months. I found going back traumatic because of all the abuse and violence that had occurred throughout my life at institutions.

WHEN I LEFT institutionalised living, I lived with an intimate partner for 16 years, and during that time I was a victim of domestic violence. I had been told what to do all my life in institutions, and I went from there into a relationship with someone who controlled me and forced me to do things. It was always my fault when something went wrong.

It took me a hell of a long time to tell my story because I thought people would not believe me – that they would think I was making this up.

I thought I would get into trouble because I always got punished for saying something. In Pleasant Creek and the CRU, we were not allowed to speak about what was going on, so I kept my abuse secret for many years.

But coming forward has provided a new lease on life; I now live in my own home and have become a passionate advocate for others.

I have spent much of my life being controlled, manipulated and abused in institutions that were meant to offer me care and support.

I think institutions, including CRUs, where people are segregated from the community, should be closed. Everyone should be treated equally; people should not be denied their rights, or have their rights taken off them. CRUs never helped to transition people with disabilities into the community to live independently, as was intended.

I HAVE ACHIEVED a lot over my journey. I hold many roles as a self advocate. I enjoy what I do and sharing my story.

I am on the board of the First Peoples Disability Network. I work with Reinforce, a self advocacy organisation run by and for people with intellectual disabilities; STAR Victoria, an advocacy organisation for people with intellectual disabilities; and Action for More Independence & Dignity in Accommodation (AMIDA).

I am a member of Self Advocacy Resource Unit (SARU); Women with Disabilities Victoria; Women with Disabilities Australia; Melbourne City Council disability advisory group; and Open Place, an organisation for children who were in institutions in the last century. I have been a contributor and speaker at forums and workshops.

During the Royal Commission into Institutional Responses to Child Sexual Abuse, I worked with People with Disability Australia to encourage people to come forward and speak with the Royal Commission, especially First Nations people who have been separated from their families and institutionalised, about the abuse and neglect that they have suffered.

I have also given evidence at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, which is happening now. I would encourage people to speak up and tell their stories to the Royal Commission.

It is important for people with a disability to know their rights and have their voices heard.

At Reinforce, we advise people with intellectual disabilities who to talk to so that they can tell their own stories.

I had support to tell my story, and I would encourage anyone to tell their story. I let people know that they will have support throughout the whole journey, and that they will be believed.

I have learnt a lot, and no-one can pull the wool over my eyes now.

I love to tell everyone now that I’m free as a bird.

JANE ROSENGRAVE is a proud Yorta Yorta woman and disability advocate. Jane lives with an intellectual disability and is widely respected for her fearless advocacy regarding violence against people with disability.

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FRANCES

Photography Series by

BUKOVSKY Q&A with FINULA GREENE

Frances Bukovsky is a fine art documentary photographer currently transitioning from south Florida to western North Carolina, USA. Their work explores where identity, physical body, and external relationships intersect, emphasising their experience as a chronically ill, disabled and queer person. Bukovsky’s work has been exhibited in numerous group exhibitions and group publications. Their debut monograph, Vessel, was published by Fifth Wheel Press in 2020.

FINULA GREENE. Can you tell us some of the little joys that have come out of creating art around your journey through chronic illness and gender?

FRANCES BUKOVSKY. Art-making brings me a lot of joy in general – I can’t quite describe the sensation I get when the shutter goes off and I can just feel that I’ve made the image I was looking for.

I was looking over my work while reflecting on this question and realised that art-making, particularly imagemaking, has given me a visual journal of some very precious moments.

When I was hospitalised in 2020 for sepsis, I had been told to eat lemons to get saliva moving in my infected submandibular glands. I came across a few really goofy photos of my friend who visited me in the hospital and brought me a huge bag of lemons. As someone who struggles with anxiety and medical trauma, having those photos is a joyful reminder of levity in an otherwise challenging time.

Another joyful moment was realising I am a non-binary queer person. While recovering from my hysterectomy, I had taken an image with a prismed rainbow on my face that was being cast by something in my living room. Something about that self-portrait made my brain

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click, and at the age of 23 I realised that I had been onto something as a teen in a small rural town questioning my gender. That was a big first step towards reconnecting with my sense of self.

I also have a lot of joy around the people that I have connected with because of making art about chronic illness and gender. Being able to connect to communities with disabled and queer people has made a huge impact on how I feel about my own identity. It also feels great to have people to share stories and advice with.

FG. As someone who identifies as non-binary, I feel that through forming my own understanding of my gender I have been able to develop an unshakeable sense of self. Along with your gender identity, has being forced to understand what is going on within your physical body brought you closer to understanding yourself than you would have been otherwise?

FB. Yeah, absolutely. Prior to coming out as non-binary and queer, I often felt like I was putting on a performance to fill roles that others expected of me. It led to living life in a way that, looking back, feels vastly disconnected from how I understand myself now. This

also ties heavily into my experience of realising that I am a disabled person. I experienced a lot of medical gaslighting in my late teens and early twenties, which made me heavily question my sense of reality. On one hand, I was experiencing a lot of illness and pain, but on the other hand I continued to be viewed as a “healthy young woman” by doctors, peers and workplaces/schools.

I pushed myself too hard to fill an ablebodied role and felt sicker as a result.

Nowadays I feel much more like myself, and a lot of that comes down to having to develop a healthier relationship with myself in order to survive being sick, both mentally and physically.

I feel like I am always checking in with myself, not just how I feel physically, but where I am emotionally and what I might improve on in order to feel more centred. This ongoing inner dialogue has led to really getting to know myself.

FG. You have mentioned that due to misinformation you received from medical professionals about your illness, you were forced to do your own research. Do you think that in some way this allowed you more room to understand your unique body’s interaction with this disease, instead of having a vague

understanding of what it may do to an array of bodies?

FB. Absolutely! I live with multiple diagnoses, so sorting out what symptoms are attributed to what can be difficult. Learning more about each

has given me a lot more insight into how I can start to approach caring for my body in ways that it might be more receptive to.

When I began researching my diagnoses, particularly endometriosis and Sjogren’s syndrome, I had quite a few ‘aha!’ moments as I realised symptoms that had seemed disconnected from those diagnoses were in fact related. Seeing diagnoses contextualised within a systemic perspective also helped me see my body as a whole rather than just one anatomical part or another.

FG. If you could go back in time to when you were first diagnosed, what advice would you give yourself to assist the journey you were about to embark on?

FB. There is so much that I would say about the nitty-gritty of navigating the healthcare system in America – about how to always ask for an itemised bill after a hospitalisation or ER visit, and what questions to ask a doctor to see if they are knowledgeable about the disease they are presenting a treatment plan for. I’d also say to always get a second opinion if something seems off.

And: Hey silly, you’re queer!

On a more serious note, I think the advice I would give myself is to find communities of other chronically ill people, whether it is through social media, or through support groups/forums.

I remember feeling really lonely because I was expecting people to understand what I was going through, and a lot of frustration because I felt isolated.

Developing a sense of community with a wide variety of disabled and chronically ill people with different experiences, learning about internalised ableism and developing healthy coping mechanisms that do not rely on other people (though they can include them) have all been immensely helpful along my journey.

It is something I wish I had done earlier in my journey so as to maybe prevent some of the negative experiences I’ve had, or at least learn how to cope with them in a healthier way.

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FG. Do you think that being diagnosed with endometriosis helped you to understand your gender identity sooner than without? If so, why?

FB. Ooh this is a tough one for me. When I was first diagnosed with endometriosis, I was misinformed about what the disease actually was, and what my treatment options were, by the obstetrician-gynaecologist I had at the time. This was compounded by years of being told I “might” have endometriosis, and being put on birth control to “prevent” disease and infertility (which birth control does not do in regards to endometriosis).

I was fortunate enough to have

access to an endometriosis specialist who performed a successful excision surgery and took me off hormones.

Over the months after being taken off hormones (during which I went through a hysterectomy for endometrial hyperplasia discovered during the surgery), I realised that I had spent the previous five years in a mentally unstable daze, dissociated from my body.

While recovering from my hysterectomy, I felt like I had returned to my body for the first time since I was 17, prior to birth control.

I came out as queer and non-binary pretty quickly once my hormones levelled off from surgery and my mother joked, “Took you long enough!”

Everyone in the family saw what I couldn’t. (Laughs)

I honestly don’t know if I would have figured out my gender identity without the intervention of my endometriosis specialist and her realising that hormones were not a good fit for my specific situation. In that way, I think endometriosis was a catalyst for the journey that I took to find my gender identity, though it also was a barrier.

FG. What are some motivations for creating? Is it a healing process for you?

FB. Creating is absolutely a healing process for me. I discovered that making self-portraits after being diagnosed with endometriosis allowed me to act as a witness to my own pain during a time when I felt disconnected from others, even while having a support system. Making photographs became my way of reconnecting with myself and developing a relationship to my body that was based on observing rather than judgement. I found it hard to hate the photographs, so I began to develop an appreciation for the body that allowed me to make the art. That creative process is still a vital part of my practice and I often create from a place of curiosity, or a desire to understand myself. I struggle with journalling and other methods of self-reflection, so visual art acts as a vital tool of introspection. When I’m experiencing symptoms or doing routines that are supportive of my body, I feel drawn

towards documenting them as an act of self-witnessing. The camera provides both an intimacy and a distance through which I can gain deeper insight into challenging emotions and events.

I’ve always been someone who creates, and it is an integral part of how I process the world. My mother is also an artist, so as a kid we would always make artwork together and I grew up with art as an integral part of my self-expression.

I often feel compelled to make artwork, and I find that my creative practice is healthiest when I follow that curiosity no matter the outcome.

FG. In what ways do you identify with the term ‘disabled’? Can you explain what it means to you both mentally and physically?

FB. I identify with the term ‘disabled’ because of both physical and mental conditions that affect the way I move through the world. I have primary Sjogren’s syndrome, a systemic autoimmune disease typically characterised by dry eye and dry mouth, though it can manifest in a wide variety of body systems. In my case it has caused secondary diagnoses of Postural Orthostatic Tachycardia Syndrome (POTS), Raynaud’s phenomenon, small fibre neuropathy, and chronic lung issues. I also live with

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endometriosis, generalised anxiety disorder and visual snow syndrome, and I am in the process of diagnosing a connective tissue disease.

I experience frequent infections, am often fatigued, and am always in pain. My symptoms range from a constant hallucination of static in my vision, to being unable to stand for long periods of time, to immobilising muscle spasms. I frequently experience near-syncope, and often have to adjust my diet due to sudden allergic or autoimmune responses.

Being disabled means that there is a lot of complexity in how I navigate life. There is a whole stack of medical records to manage and specialists to coordinate between, and I feel like I get stuck by the phlebotomy vampire every few weeks. This is on top of often debilitating symptoms that can be poorly understood by peers and employers, as well as trying to manage earning an income, some kind of a social life, and everything else in daily life. It is often exhausting, complicated and messy.

There is also a lot of care and creativity in creating access for myself and others in the communities I am involved in. This has led to becoming more intentional and more patient, and actively holding onto hope for a world of accommodation and support while working to bring that to life in any small way I can.

FG. What are some changes that you would want to see in the medical industry so it is more inclusive of all bodies and genders?

FB. The doctors who have had the most positive impacts on my health are the ones who sat down and listened to me beyond a list of symptoms and diagnoses. Shifting healthcare into a system of listening and support rather than one of strict classifications and protocols can be a starting place to address inclusivity.

Healthcare also has an implicit racial and gender bias that needs to be addressed in order to make care more accessible and effective for all people, especially Black people, Indigenous people, people of colour, trans/nonbinary people and women.

Creating a system in which each patient is seen as a complex human being with unique needs and healthcare goals would make for more positive patient care interactions that include rather than exclude.

FG. How has chronic illness affected the ways in which you connect to loved ones? Have you developed new ways to create intimacy with those around you, while having to spend most of your time at home or in medical facilities?

FB. Chronic illness has affected the way that I connect with friends more than family. I come from a family full of chronic illness, so I grew up with us continuously learning how to support each other during various bouts of illnesses.

Zoom calls and Discord/social media are a staple in my social life, especially since the pandemic. I am immunocompromised with a chronic lung condition, and lived for most of the pandemic in one of the areas with the highest rates of infection in the USA, so I’ve been home a lot. (Laughs) I haven’t seen many friends in person over the past year and a half, so going virtual has helped feelings of isolation immensely.

Early on in the pandemic I became a part of the Six Feet Photography

Project, which is a volunteer-run community. Over the past year and a half, we’ve hosted near weekly Zoom calls with artist talks and panels, community print shares and practice groups. Through consistently getting together via Zoom with a group of people, I’ve met so many folks that I’ve gotten to connect deeply with, even if most of us aren’t even in the same area. Those friendships and connections feel as intimate as if we have been in the same room together.

Instagram has also been a tool in connecting with other people.

I’ve found friends through posting photography that I care deeply about. Sending memes and swapping ridiculous medical stories can be so uplifting on a day that I am stuck in bed. Knowing someone else is holding their phone in their bed or on their couch gives a sense of hanging out together, while potentially on opposite ends of the planet.

FG. What are a few of your favourite things that you have learnt about yourself throughout this journey?

FB. I’ve learnt that I am a lot more resilient than I have given myself credit for in the past, which has reframed a lot of my life and restructured my priorities. I’ve also learnt that I love to garden (which started as a channel for anxiety), that I am very creative in the kitchen when it comes to low-energy, allergy-friendly, affordable food, and that I really enjoy learning about medicine and anatomy.

FINULA is currently finishing their undergraduate degree, majoring in Gender and Sexuality studies and English Literature. They identify as non-binary and bisexual and are interested in sexual health and pleasure education in the LGBTQI+ community, whilst currently working at a boutique sex shop in Melbourne. They are passionate about writing on topics such as sex, queerness, gender and mental health.

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Some people struggled with social isolation long before the pandemic.

ALONE IN A CROWD Words: BEAU WINDON Images: WUTHIPOL UJATHAMMARAT

A COLD BREEZE passes over me from the open window. I sit up and contemplate closing it and turning the heater on, but if I do that, I will have to wash my hands afterwards. My hands are too dried out to go through that again so soon. I only washed them ten minutes ago after my phone fell onto the floor.

Instead, I lie back and stare at my ceiling. It’s the generic kind of cream-white that most ceilings are but sometimes I see dusky splotches among the cream and wonder how long they’ve been there for. Did the previous tenants make a habit of touching the ceiling? What could they have been doing with their hands to leave such marks? Am I seeing things? My head plays that cruel game of assuming the worst and convincing me it is true.

Obviously the previous tenants never washed their hands. They’d come back from the toilet, shit stained along their fingertips, and reach for the ceiling, rubbing their faeces along it.

No. That’s illogical. Why would anyone do that? That’s gross to ‘normal’ folk as well, right? That wouldn’t make sense.

It wouldn’t make sense. It wouldn’t make – say it out loud – “They wouldn’t; that doesn’t make sense.” Assuring myself three times feels right, but still.

I get up and wash my hands, lathering the soap for a count of thirty before washing it off. As I go to turn the tap off, I feel a prickle in my pinky. Did it just touch the basin? Probably not – I’m too careful – but I can’t be sure so I soap up my hands again.

When I’m done, I walk into the lounge room and curse. I should’ve closed the window and turned the heater on before washing my hands. Is it cold enough to warrant washing my hands again? Is there anything else I could do to justify washing my hands again so soon?

I could put some dirty clothes in the washing machine and then wash my hands. That would make more sense. I close the window, turn the heater on, load the dirty clothes into the washing machine and wash my hands again, with soap. Always with soap. I never wash my hands without it. Water alone does nothing, I think to myself.

I wish someone with authority would tell me otherwise. No, I don’t. Because

then I might believe them and then I could end up contaminating everything.

It has been three days since I spoke to someone. It has been three weeks since I left my apartment and saw another living person. It has been nearly eight weeks since I spoke to another human face to face.

I LIVE ALONE. I’ve lived alone for nearly ten years now. It’s a tactic to make my life easier, and as a bonus it also makes the lives of those I care about easier.

I’m difficult. I know I am. I’ve been told that my whole life and I see how different I am from others. How much trouble and stress I cause those around me. How much trouble and stress they cause me. You need to be so patient to live with me.

It’s not that I don’t like living alone – I do. Much more than when I lived with others, years ago.

Back then, I was always stressed out and panicked about someone doing something to accidentally set me off. I was a rubber band stretched out across five fingers, waiting to snap. I don’t lash out violently – I melt down in panic and destroy people’s opinions of me.

When I was young, I was terrified of living alone. Solitude would make me an easy target for ghosts. I didn’t believe in ghosts, but worried that I was wrong.

Ghosts prey on the lonely. They thrive in the silence. Living alone sounded like it would be the death of me. But I’m a lot more palatable when I have time to myself to wring the weirdness out.

I’m still scared of ghosts. Not so much the supernatural entities (but also a little bit the supernatural entities) – no, the ghosts that haunt me are the memories. I remember every time I got something wrong, every time I said something wrong, every time I misunderstood, every time I missed the obvious. These memories come out now, in the silence, and they cut me like a knife.

“Fuck!” I say. No-one is around me to hear but saying it might make me feel better.

I don’t swear often; it was a rule that we didn’t swear when I was young and some rules are hard to break.

Even now, saying it while alone, I feel a pang of guilt. But I’m angry.

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Throw your laptop over the balcony.

That’s a ridiculous thought.

Do it. You’re angry. It’ll make someone aware that you’re angry.

It would cut off my only connection to the world. It would break my only outlet for coping. Still, I think about it. The thought hovers in my mind for hours, wanting me to lash out. Wanting someone to check on me. Hours and hours and hours.

Throw it.

The news of going into lockdown again sets off the intrusive thoughts.

The intrusive thoughts beg for reassurance that I’m going to be alright.

Reassurance needs to be provided by someone other than myself, someone I trust.

If you throw your laptop over the balcony, you’ll get attention. You’ll get reassurance.

That thought is so irrational. But it won’t leave me alone.

Why has this set me off? I’m terrified of getting sick. I’m terrified of being contaminated and passing that contamination on to everything in my apartment and everyone I care about. So I am happy we are going into lockdown, as it means protection. It just means being alone again. Completely alone; just me and the ghosts.

I’VE BEEN SOCIAL distancing my entire life. People getting too close to me makes my skin itch.

When Covid-19 first broke onto the scene, none of the health measures were new to me.

Wash hands often. Yep. Stay 1.5 metres from others. Yep Yep. Sanitise hands after touching things.

Yep yep yep.

I was diagnosed with obsessivecompulsive disorder (OCD) when I was in primary school. Sanitiser has been an accessory in my pocket for nearly my entire life. There are doctors who don’t wash their hands as thoroughly as I do.

And I wince at even an accidental touch from someone. I’m hypersensitive about it. A brush of someone’s bag against my skin makes me jump.

People used to notice and stare and wonder what was wrong with me.

Covid-19 has lessened that. There is no longer anything ‘wrong’ with me; now I’m just pedantic about the virus.

My reactions to people getting too physically close to me are seen as acceptable now. Instead of looking like a ‘crazy person’, I just look vigilant. And there are even some people who would think I’m doing the right thing, because they do it as well. They don’t have OCD or autism spectrum disorder (ASD) or any persistent mental health issues, they’re just doing what is needed to fight the virus.

“Now everyone gets to understand what you go through every day,” Mum had said. “Maybe this will make people understand you better. Understand what life can be like for some.”

“Yeah, I hope so,” I’d replied.

But I know that’s not the case. For them, it is a choice they’re making for the greater good of themselves and their loved ones. For me, it is an album that I don’t like that is stuck in the car stereo, and the volume is broken but I can’t turn it off or get out of the car. I have to listen; there’s no choice. This is my life and someone taking an excursion through it won’t help them understand.

They have proper social supports set up and, in the end, they get to leave, while I’m trapped in the car with the horrible music and nothing to keep me sane.

Politicians babble on about how there is a mental health crisis, ranting about it every chance they get. They talk about suicide, and the damage that lockdowns are doing to young people. They say, “We can’t lock down forever. This is destroying people’s mental health.” They shout these things in interviews, then go back to their big houses and buy plenty of food and entertainment to share with their loving friends and family whom they see any time they want.

People who have never cared about mental health issues before are screaming that we need to be more worried about them than about the virus destroying people’s health.

It makes me feel so much worse about myself. My chronic mental health issues never mattered to these politicians. I didn’t matter to them. But now that mental illness isn’t relegated to the fringes of society, it is suddenly an important social issue. These politicians have made it clear that mental wellness is only important for those who didn’t struggle with it before the pandemic.

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Society is a dancefloor, and our leaders want to reopen the club for these people who have been locked out. The problems of people like me – people who were never invited onto the dancefloor – have no value to them.

I’VE BATTLED anxiety and depression my entire life. I can’t remember a time when anxiety hasn’t ridden on my shoulder to whisper diabolical plots into my ear. And the depression – well, it walks hand in hand with shame.

Shame is the coat of armour that I wear to survive in public. Shame makes me think twice about ‘acting up’. Shame reminds me how to mask myself. Not the public health orders mask, no – the mask of a socially acceptable member of Team Australia.

MELBOURNE OPENS back up. Everyone online is ecstatic. Pride in overcoming the virus smothers social media.

My life barely changes.

I don’t have many close friends, and I am not the type to message someone to ask to hang out. Without a real reason to hang out, I just can’t formulate a way to get that social fix.

That’s how it has always been.

I’m okay with that. While I am not a very social person, I like wandering around the city on my own, going to cafes and people-watching, or browsing bookstores and taking sly glances at what books other people are interested in. These are opportunities to find a way into society.

Even though I am alone, it makes me feel like I am alive. There are possibilities of connection, however small they may be.

To be on the spectrum is to know complex trauma. It’s constant mocking and disappointment and frustration and awkwardness and bullying and wandering without a map.

To have ASD is to feel like an alien watching humans enjoy themselves and longing to be among them but never feeling like you belong.

I AM TRYING to break my fear of the outside. My yearning for some kind of connection is starting to challenge my fear of the virus. I still wear a mask

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everywhere, and I still obsess about social distancing, so I should be fine.

Once I get vaccinated I can start trying to rebuild what Covid-19 broke.

I’ve re-downloaded Tinder and am even trying out this Hinge app that is getting a lot of hype. It’s so much easier to get to know someone through messaging. Having the time to really think about what someone has said and understand what they mean allows me to reply in a socially acceptable manner.

It makes me a more palatable person. I need to be palatable. I need connection of some kind.

After reopening, it feels like years and years of therapy have been flushed down the toilet. All the ridiculous fears I spent years attempting to silence have been proven worthy. All the excessive habits I compulsively used to combat these fears, habits that I worked so hard to assure myself were unwarranted and illogical, have been widely recommended. All the OCD rituals and habits that I fought so hard to break have regained their control over me.

In January 2020 I could pass for someone not consumed by OCD, but now I’m right back to being the overdramatic guy that is taking precaution and worry to extremes.

MY ENTIRE LIFE I’ve been called eccentric. I liked that. It was way better than the alternatives. Eccentric was a label that didn’t make other people look down on you.

I was used to people learning about my diagnoses and looking down on me, so I did all I could to hide the ‘tells’.

“I’m just weird,” I’d say when I’d let a more noticeable neurodiverse trait slip.

I managed this camouflage so well for so long. I had friends and girlfriends that wouldn’t find out about my other labels for months or even years. When they did find out, I always felt that moment of panic: the worry that they’d start handling me with kid gloves and treat me like I’m fragile and naive. If I voluntarily let people in on who I really was, that meant I felt safe around them.

Covid-19 changed the rules of that game. Masking myself became so much harder as I struggled to hold the same pandemic stresses that everyone was going through. So I let it go and stopped caring about what others thought.

“I’m difficult.

I know I am.

I’ve been told that my whole life and I see how different I am from others.

How much trouble and stress I cause those around me” 48

Surviving is hard enough in a pandemic.

In 2020, I stopped being ashamed of who I am. I dropped the shield and started wielding my differences as a sword. I had no choice; leaders of the country co-opted my struggles to push their agenda.

IT IS TIME to speak up and let others know I am here, that there is nothing to be ashamed of. If anyone judges me for who I am, then they are the ones who should be ashamed.

The disabled and neurodiverse belong on the same exact dancefloor as everyone else, sometimes we just need a hand to get there.

I am still lonely. I still feel isolated – I probably always will.

It’s so hard to feel connected to others when you have to put in so much more effort than they do. But through truly owning who I am, I’m starting to mingle with others more often. And I can even see some hands waiting to help me up to the dancefloor.

BEAU WINDON is a neurodivergent writer of Wiradjuri descent based in Naarm/Melbourne.

He wishes he was a Green Lantern but since that’s not possible he instead diverts his imagination into writing creative non-fiction, poetry and YA fiction.

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COLOUR

Words: NICOLE LEE Images: KATHARINE T. JACOBS

ME

A

MAD

WOMAN

An exploration of madness, anorexia, violence and unsafe psychiatric care.

I’M IN AN ACUTE psychiatric unit (psych ward, madhouse, asylum – or whatever other stigma-laden term might be used to characterise it). I’ve been here for two and a half weeks and counting. It’s been over six years since I was here last, and to say it’s confronting is an understatement.

How do you tell people that, at 42, your anorexia has relapsed? I can’t even bring myself to tell my children. How do I explain that my recovery on the other side of trauma has not only come to a standstill, but has taken me back to a place I never thought I’d have to revisit – both literally and metaphorically?

Being here with the knowledge I have now makes me uneasy. Sometimes a lack of knowledge is not such a bad thing. I can pinpoint how things had failed, and the contributing factors that kept me stuck living with violence for so long.

I’m a rational, intelligent woman, so why can’t I reason my way out of this?

Perhaps it’s because part of me, like much of society, buys into the myth that blame for my predicament somehow lies with me.

IT’S ONE THING to be able to understand the how and why of mental illness and the long-term impacts of trauma, but navigating this complexity in practice is entirely different.

Recovery isn’t linear, and the ugly, raw, honest truth is that I’m not the picture of coping and competence I prefer to present to the world.

So here I am. Sitting on the floor of my sparse hospital room, with its broken old curtains taped to the wall with Micropore, writing this like my opinion matters somehow. I don’t even get a toilet-roll holder, just a hole in the wall that the roll sits in.

There’s that old familiar look of distrust and disbelief on some of the nurses’ faces when I speak. I say some, as they’re not all bad – just the ones who probably shouldn’t be working in this environment.

ONLY A FEW months ago, I was delivering a presentation to the women’s hospital that sits on the same grounds I’m on right now about how the health system plays into a problematic and pervasive dynamic of gaslighting

when it doesn’t listen to people with eating disorders, mental illnesses and disabilities in relation to domestic violence. My presentation asked the audience to confront carer and disabledperson dynamics, including the ‘crazywoman’ trope that clouds professional judgement even in 2021.

Yet here I am. I’m back to being the ‘crazy woman’, in the very place that has put me in harm’s way time and again over a period of many years. To say I have legitimate issues with trust in this system is an understatement.

I’M FAR MORE cynical than I was six years ago. The affirmation cards and positivity mantras all over the walls make me cringe: “Choose recovery, be strong”; some bullshit about the human struggle and what we “don’t need”; blah blah blah. What I don’t need, as someone in a wheelchair, is a heavy door I can’t open independently.

This brand of toxic positivity represents an unforgivable denial of my human experience. It offhandedly implies that my brain’s current preoccupation with the trauma I’ve been subjected to is somehow a failure of resilience, and not the result of the many factors that have traumatised me.

Let’s not sugar-coat it: no matter how many pretty mantras cover the walls, public mental health is still an underfunded holding pattern that’s only one step up from prison on the humanmisery-warehousing continuum.

This place does not ‘recover’ people.

It is crisis intervention, and, well, I was on the verge of crisis.

THE WORDS “choose recovery” play on my mind in a continuous loop because to me, this phrase infers that my predicament involves a choice I don’t recall exercising.

I didn’t know mental health or illness was a choice; I don’t know how my choices landed me here in this place.

I am surrounded, it seems, by nonchoices wrapped up in the language of autonomy, which only adds to my confusion. There is no choice involved in having delusional thoughts, or not knowing where you are.

Though madness does have its more comfortable moments: wallowing in sweet delirium as the walls melt away,

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along with the constant demanding pressures of life.

That’s tomorrow-Nicole’s problem.

I’ll recover tomorrow.

I need to meet this inpatient admission with some characteristic dark humour, otherwise I think I’ll slip further into a place I’m scared I won’t want to come back from. Step one down: I’m here. But why?

What I’m actively choosing to do by coming here is hand over all autonomy.

I was starving myself and would have continued to do so with zero logic behind it.

The years of abuse, coercion and control enacted by my ex were spilling out of the neat little boxes that I’d packed them all into. The boxes and pieces of string that link one experience to another had all morphed into a giant, tangled mess.

And here I am, putting my trust in a system that has failed me so catastrophically in the past.

I can’t help but hear the old saying: “What’s the definition of madness? Doing the same thing over and over again and expecting a different result.”

Well, honey, colour me a mad woman, because I came back.

I’VE BEEN ASKED, multiple times a day, if I’m safe. They mean am I safe from harming myself, rather than am I safe from being harmed by others. The latter is what we usually picture when we conceptualise the notion of women and gender diverse people’s safety.

Am I safe from myself? Am I suicidal?

Am I going to harm myself?

Just for the record – and let’s face it, everything in psychiatric care involves a record – I’m not a risk to myself, but they really haven’t understood how unsafe these places are, or how this environment is the opposite of what many of us need.

It’s not a trauma-informed space.

There are big, loud men here. So no – I don’t feel safe. I’m not safe.

I’d come here naively hoping things had changed in the last six years. Is this an example of the madness of hopeful expectation again?

Or are we programmed to want the glass to be half full? The glass is definitely half empty today.

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This is compounded by the worldwide pandemic. We were in the middle of lockdown number five for Victoria when I arrived and this morphed into a sixth lockdown while my attention was on other things – recovery, perhaps. This means that not even a friendly face can visit to break up the day. No-one is allowed in, and we can’t go out.

This unsafe place has become so much more unsafe, all in the name of protecting us from an outside threat that feels so much less threatening to me than what we encounter in places like this. The imbalance of power in places like these (and any hospital ward in general, really) is amplified by the lack of oversight that lockdowns inevitably bring.

What happens if I can’t advocate for myself? There are no external visitors whose watchful eyes – non-mad and therefore truthful – keep places like this in check. They can point out mistakes without the fear of not being able to identify reality. They can advocate for better care without fearing reprisal from those who could use a little encouragement to do better.

It shouldn’t take an external voice to speak up when things go wrong, but remember: mad women’s truths often get ignored or disbelieved. It is easier for employees to hold the view that the system they are so intimately invested in is doing good work than to acknowledge it is failing us.

This makes it hard to trust them again.

Yet here I am, right back to the madness of hope and expectation.

There are so many memories entangled with trauma in this place: the doors opening and closing; keys clanking together on nurses’ waistbands; all the smells mixed with the echo of voices in large, enclosed spaces. Reminders of past trauma, when mental health was used as both the reason and excuse for his violence. There is no recovery here, only a too-small bandaid.

But I knew this, and coming here was still what I needed. Maybe I’m not that mad after all.

I also know that if we want to get serious about women’s mental health and trauma recovery, we need to start envisioning a better system than this.

You can’t slap a mantra on a wall and call it a safe and therapeutic space.

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IN SAYING ALL of this, the majority of nurses on the ground who work these wards day in and day out are deeply invested. They do whatever they can, often above and beyond, to support the patients they care for.

The issue is that they don’t hold much (if any) power. They’ve inherited a workplace that is poorly funded and developed with a topdown, one-size-fits-all approach, rather than a bottom-up, reflective and flexible approach.

There is limited dignity in public mental health units. They are a means to an end, but at what cost?

They are places where the largest proportion of power is weighted against the one in crisis. There is a balance missing here, between keeping people safe and avoiding a regimented, prisonlike setting.

So many fight against this system because submitting has led to many harms, or at the very least, being let down time and again.

It’s not mad to fight, or to refuse to trust a system that has been used to damage you in the past.

Unwell places trying to treat unwell people is the very definition of madness.

All the while, power colludes with power and we are denied our humanity in the process.

How can the mind transcend madness when it’s confined and magnified within these walls?

This place has consumed so much of the very essence of us; it makes promises that sound as unhinged as the voice in my head telling me not to eat.

This blue-sky-thinking, outside-thebox idea of a trauma-informed, nonpunitive style of treatment is possibly my mad thinking coming to the fore yet again.

What is the ontology of this system – its people, its walls, our minds?

The incoherency of it speaks to madness – but to whose madness does it actually speak?

NICOLE LEE is an anti-violence activist with a focus on women with disabilities in the prevention of family violence space. She is a sometimes writer, public speaker, inaugural Victims Survivors Advisory Council member, and an unapologetic ranting feminist with plenty of cats.

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Always the

Words & Images: CHLOE SARGEANT

ALLY

Not being recognised as a member of disabled or queer communities can lead to a sense of invisibility.

“Words are not meant to stir the air only: they are capable of moving greater things.”

Natsume Sōseki, novelist

THE ILLNESS THAT I live with is invisible. It permeates my body through my nervous system and affects every single part of my existence: my time, my energy, my rest, my relationships, my work, my clarity, my mental health, my happiness. My words. My tears. My experience of the world as a whole and, some of the time, the way the world views me.

I have an illness called fibromyalgia, and while there is little known about the condition, doctors currently believe it means my nervous system malfunctions and permanently sends incorrect messages to my brain telling me I am in pain. This means I feel relentless, widespread pain of varying severity across my body, and have bouts of fatigue that can be so severe I am left bedridden for days.

I also experience a veritable horror show of other symptoms that pirouette around my body on an invisible roster: nausea, headaches, migraines, bladder issues, chest pains, cognitive and focus issues, memory lapses, numbness, dizziness, fogginess, tremors, menstruation issues, and plenty of comorbid mental health conditions.

I have been chronically ill for well over a decade now, but I’ve only had my diagnosis for around three years – largely due to the medical system’s lack of interest in, and knowledge of, chronic illnesses. It took many, many years of fighting with doctors to finally be taken seriously, to be educated on why my body was failing me, and to be officially diagnosed.

I was drafted into a war that my body never saw coming, and finally receiving my diagnosis – my victory – was bittersweet.

I have had to move mountains to be a sick person, to identify as ‘disabled’.

LONG BEFORE MY BODY

began to change my life for me, I developed a love for words, which eventually led me to a career in writing.

I love language; I love everything about it.

I love that it changes, that it evolves across continents in different ways.

I love that it can be loving and that it can hurt.

I love that it can erase hurt.

I love that with just a few letters arranged in a particular way, I can tell someone who I am and what is important to me.

I love that I can express identity, my sexuality, my loves, my qualms, my innermost secrets, my pride.

I love that at the age of fourteen, I was able to say that I was bisexual. I was able to tell the world who I was and how I loved people with a single word.

And now at the age of thirty, I love that I confidently say, “I am disabled and bisexual.”

‘Disabled’ and ‘bisexual’ are words that mean so many things to me: they tell stories of battles that I’ve lost, ones I’ve picked myself back up from, ones I’ve triumphed in – battles within myself, and with societal expectations.

I struggled for a long time as a teenager, deciding how and if I should come out as bisexual. And I struggled all over again coming out as disabled: it was so deeply entrenched in me that I could not use the ‘d’ word, because I was ignorant about what disability was and what it can actually look like. It took nearly a decade of pain and struggle to acknowledge that dynamic disability is valid, and that I am a disabled woman.

Despite being outspoken about my sexuality and chronic illness, people don’t seem to like using the words that I have chosen for myself, the ones I display so proudly. I continue to be called an ally. An advocate for disabled people, a supporter of the LGBTQIA+ community, an ally to the causes.

‘Ally’ isn’t a dirty word – it’s just not my word. I’m not an ally to disabled people, I am a disabled person. I don’t feel insulted being called an ally – I feel invalidated, dejected. Rejected. I feel

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suffocated back into the warm blackness of depression.

It pierces me, being told over and over, even by people within the communities themselves, that I am once again an outsider looking in, a stranger to a family I had loved, and one I thought had loved me back.

I HAVE FELT a similar pain before, as a queer woman.

Myths about bisexuality, questions about its validity – and even its very existence – have led to many believing it is a marker of a bad queer, or not a queer at all.

I have experienced people in my community telling me I simply need to choose: men or women – you’re either in or out kid, pick a side. I have had women leave our first date upon hearing I am bisexual. I have been made viciously, unquestionably unwelcome at queer events. I have stayed home from Mardi Gras and cried.

Always an ally, never a valued member of the community.

These sorts of experiences, common to many bisexual people, feed into imposter syndrome, and this is something I now also confront with invisible illness. My disability and my queerness are both invisible to the naked eye, too murky to be easily defined – so I remain in the grey areas.

Am I even allowed to use the words I chose so carefully for myself? If I am really part of a community, when do they welcome me with open arms and tell me I am finally here and I am safe and loved? If they don’t welcome me, was I really here at all?

Imposter syndrome is a nasty thing; it angrily seeps through you like sweaty fever dreams in the night, so hot you burn until you finally wake up, clammy and confused in cold, wet sheets.

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Often used to describe the overwhelming feeling of inadequacy in one’s skills, accomplishments or career, imposter syndrome has been adopted to also describe not feeling welcome or recognised by a community one is a part of.

I have felt imposter syndrome bearing down heavily on me in queer spaces, making me feel as if I must wobble on a knife edge between gay and straight instead of just what I am: bisexual.

And I have experienced imposter syndrome with my chronic illness. I questioned whether I was just maybe overdramatising things, when I realised my body felt much the same way my elderly grandmother would describe hers: constantly tired and sore. Maybe they were just symptoms of depression?

Maybe I was losing my mind?

Eventually, I went to a doctor. All their tests showed I was in perfect health; I would go home second-guessing my brain again. But then it would get worse. So I’d go back. Then to another doctor.

Over the years, another, another, another. I was told that I was depressed: “Just increase your medication dosage.”

Many doctors told me to change the type of antidepressants I took – I’ve now tried almost all of them. I was told that I simply had to gain weight, that I had to change my diet. Another told me to give up gluten. Another doctor.

Another specialist. Another. Another.

Another. Another. Another. Another.

Another. Another. Another.

They say I’m being overdramatic. Too demanding. Hysterical.

“Are you doing this for attention? It’s all in your head.”

A Cry For Help, one doctor noted down on his sheet, when he thought I couldn’t see.

AFTER BEING GASLIT for

so many years, my sadness and anger became shadows and I instead started to question my own sanity: Am I actually sick?

I eventually found a GP who listened, empathised, and helped me navigate the medical system so I could eventually receive a diagnosis.

Before I experienced it myself, I could never have imagined how difficult it is to simply access this system that is largely designed against us. Despite Australia having one of the best medical systems in the world, this system is created for short-term sickness.

If your sickness isn’t curable, then the system is stacked against you.

The system sees you as a burden who is taking up too much of doctors’ time, taking up a hospital bed too often, taking too many welfare dollars – simply taking up too much space in the world.

The mistreatment I went through weighed heavily on my mind. I am white and middle class in a country with a government-subsidised medical system.

If I experienced this as such a privileged person, then what must others with less privilege than I go through? It keeps me up at night.

So I became more and more engaged with disability activism, and increasing the visibility of those living with chronic illnesses, until eventually I dedicated myself to it in my professional life and personal life.

I HAVE FOUND LOVE and a

sense of welcome in my communities, and this is a gift I will always treasure deeply. But love from the kinder part of the community makes words like ‘ally’ from others sting sharper and burn the imposter syndrome deeper into my

skin, a painful tattoo that reminds me that to some, I am and will always be an outsider.

It dims the warmth and precious kinship I am so grateful to have been blessed with by disabled and queer people over my years.

It makes me forget what I know: that I am valid; there are open arms in my communities for me.

Sometimes, these feelings make it hard to remember that the beautiful words I have fiercely fought to clothe myself with are mine, and I can use them as I please. But this makes me more determined to be visible, and while I cannot be more ‘seen’, I can be more heard.

Too able-bodied to be disabled, too straight to be queer – always the ally, never the bride. But I love and care for my communities deeply, and I refuse to stop being a loud, unapologetic, out and proud disabled bisexual person.

Words can make us hurt and heal, find fellowship and find ourselves.

Our words are forged of our history: our kinship and our battles, our hurt and our healing.

My queerness and my disability may be invisible, but my words are not – they are my power and they will be heard.

“We have to do it because we can no longer stay invisible. We have to be visible. We should not be ashamed of who we are.”

Sylvia Rivera, civil rights activist

CHLOE SARGEANT is a Sydney-based writer, producer, illustrator, radiantly queer scallywag, noodle enthusiast, and one half of the Chronically Fully Sick podcast. She’s currently writing a book about living with fibromyalgia.

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Words: ISIS HOLT Images: JADE FLORENCE

THE PRESSUR OF PERFE Elite sport demands that able-bodied athletes and para-athletes have ‘perfect’ bodies.

RES ECTION

GROWING UP with mild cerebral palsy (CP) meant I had the privilege of ambiguity in the worlds of disabled and able-bodied people alike. Unfortunately, fitting into neither of these groups left me floating in a strange no-man’s-land of ‘acceptable’ body types.

I started to become acutely aware of my physical presence in the world around the jarring age of 12 or 13, when I also happened to be falling hard and fast into the world of elite sport.

Consequently, I found myself contemplating how to define my body.

Identifying as female and slightly disabled was probably the extent of my knowledge of self at the time.

Due to the mild and specific nature of my CP, I was never too concerned with any of my school friends finding out my secret – that sometimes my body didn’t behave the way I wanted it to.

I FOUND MY way into the school athletics program in 2013 and then suddenly onto the Paralympic world stage in 2016. It wasn’t until much later in my career that I was forced to confront the reality of my physical identity very quickly and on very public terms.

The thing about athletics, able-bodied or otherwise, is that it is deemed a spectator sport. Leading up to my first world championships, I was still naive enough to not be particularly fazed by this concept of external judgement.

As I got older and more successful in my career, however, I became more aware of how I looked compared to other athletes. Both the para-athletes standing next to me on the start line and the able-bodied athletes in my training squad were points of reference from which I could score my own level of athleticism and self-worth.

I became attached to the idea that if one could spend years mastering the art of athletics, they could also master the art of the athletic body and, as such, reach some higher level of divine existence. It was perfection or nothing.

There was one slight problem with this plan. If I wanted to look like the ‘perfect’ athlete, I had to decide if that meant perfect able-bodied athlete or perfect para-athlete, because these two things are mutually exclusive. I had to

pick a side. This dichotomy led me to an odd understanding of self. While I knew that I could effectively pass as ablebodied, I also knew that my body would betray me the second I was placed on a start line next to other able-bodied women my age.

Similarly, it was hard to explain to the average person that I competed at the Paralympics when I was capable of walking and still retained each of my limbs. This is a crude example of how people differentiate between ablebodied and para-athletes, but it is very much my reality.

I didn’t consider myself blessed with a fully functioning body, and I also didn’t have an obvious, recognisable disability.

FOLLOWING MY TWO silver medals at the Rio Paralympic Games, I felt a deep internal sense of failure. I was expected to show up as the best in the world, so to come out second best was a low blow for a teenager still trying to figure out if she could sit with the cool kids at lunchtime.

My sense of failure soon evolved into a new obsession: a fierce desire for perfection. The following year was to be the comeback; I would be older, stronger and wiser than I had been 12 months earlier.

Something people don’t often talk about in elite sport is the idea of full-system fatigue. While your body is obviously under a lot of pressure, so are your mind and the systems that keep you healthy. This sense of fatigue looks different for everybody. For me, it existed on a biological and neurological level – a by-product of my body’s inability to manage huge amounts of load, which is something quite common with CP. Load is a word commonly used in athletics that refers to the amount of stimulus being put on the body – which may include training, stress and anything else the body has to handle.

As we got closer to the London World Championships in 2017, I began to fall ill frequently. This was likely due to a range of factors – poor nutrition, stress, training and school – anything and everything that added load to the brain and body. As a result, I found myself hospitalised with tonsillitis two weeks before my events in London.

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By the time I made it to the start line of my first event, I was filled with an odd sense of calm. It had occurred to me that those pressures of perfection no longer applied. It wasn’t because there were no expectations or because I had reached some place of mindful acceptance, but because I felt that being so sick two weeks earlier meant, logically, I shouldn’t be expected to perform well.

There is a dangerously attractive belief that the only valid reason for failure is something completely out of your control, such as illness or career-ending injury. The pressure can become so intense that athletes in a similar position to 15-year-old me wish such things upon themselves to escape the discomfort of having to face the unknown, while millions watch on and comment on their every move.

AS I’VE PROGRESSED in my career, I have been lucky to work with people who are excellent at managing expectations around what the perfect athlete looks like.

Balance has been the clear message across the board. My dietician was able to educate me on how the body uses energy and explained that cutting out carbs and sugar did not mean that I would be running faster. If anything, it would leave me depleted of energy and inviting injury. Likewise, I have a strength and conditioning coach who emphasises the importance of feeling fit and strong rather than looking it.

This is not to say that toxic ideas around athletes’ appearances don’t still exist. Only recently, I heard a coach instructing their athletes to reduce their diets in the lead-up to a major championship so they don’t look “fat” on the start line.

IF THERE IS ONE thing I wish I could influence in the world of elite sport, it is the notion of what perfect looks like.

We see messages in the media surrounding body positivity and inclusivity, but people in the world of

elite sport seemed to have missed the memo.

While I still grapple with the fear of spending time away from training and eating this instead of that, I now try to separate my beliefs about my body from the biological facts of my body.

Sometimes, when I need to get through a hard session and am faced with the reality of several more stomach-churning reps, I tell myself that my body can run as fast or as hard as I need it to. My body can carry me across a finish line and tolerate lactic acid. I only feared those things because of the thought processes that tried to convince me otherwise.

Likewise, my body – regardless of how it looks – can keep me alive, breathing, moving and functioning as well as it can, often depending on the level of care I offer it.

This was something I failed to consider a few years ago. Eating or sleeping less, and paying less attention to what my body needed, left me with physical and mental deficits as I searched for the perfection I craved.

While I think this journey of selfacceptance is a long one, I know that I undertake it with many other young athletes struggling to understand what ‘elite’ looks like and wondering what needs to be sacrificed in order to achieve that.

The answer I have come to: nothing.

It is only by taking a holistic view of who you are and what your body is asking of you that you arrive at a sense of bodily equilibrium. Not because you have a ripping six pack or only eat superfoods, but because you understand what your body needs to function at the level you are asking it to.

You treat your body with respect, and trust that you know yourself and your needs better than any able-bodied or disabled person standing beside you on the start line.

ISIS HOLT is an elite athlete studying psychology, who is passionate about well-being and mental health in young people.

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Image Series by

NICOLE An individual from the shoulders up is facing the viewer. Their eyes are all-white and there is a third eye in the centre of their forehead, the pupil looking forward. They have a bowl-cut hair style and are wearing a suit.

The colour scheme is in a range of purples.

WHEAT

Q&A with MELODY SHOTADE

Nicole Wheat has a BFA in Illustration from the University of the Arts in Philadelphia and an AAS in Graphic Design from Suffolk County College, New York. Nicole was born with severe hearing loss and started to lose her vision in early adulthood.

She was diagnosed with Usher syndrome at the age of 28. Usher syndrome is a rare and incurable genetic disorder that includes hearing loss, balance issues and the onset of retinitis pigmentosa, a degenerative eye disease that has no known cure. Sharing her experiences and emotions, all figuratively tucked away within each drawing she creates, is something she feels is her purpose.

The colour scheme is illustrated in an analogous blend of cool-toned hues. There is a woman with long, purple hair looking at the viewer, and her hand covers her left eye. Her right eye is hollow and her left eye is embedded in the centre of her raised hand. There is light emitting from her pupil.

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MELODY SHOTADE. Your illustrations communicate strong emotional states. What inspires such raw energy in your work?

NICOLE WHEAT. When I was diagnosed with Usher syndrome, the potential of losing my eyesight started a trajectory of emotional highs and mostly lows – a type of fear I am now married to. But somehow along the way I made it my goal to displace the pain and depression, and express it through art instead.

MS. You seem to gravitate towards the magenta/purple colour palette.

Can you tell me about what these colours evoke in you and what they express for you?

NW. I’m happy you asked because it’s pretty funny, my affinity for magenta.

As a child, I’d walk around the house demanding everyone to know that my favourite colour was magenta, and I would confidently spell it out to make sure they heard. It wasn’t pink, it wasn’t purple – it was a special colour: magenta.

But believe it or not, now my favourite colour is actually blue.

The neighbouring hues naturally followed an analogous colour scheme of purplish nostalgia as my style developed, and nowadays it’s become a staple of all my drawings. The duality of pinks and blues, and their symbolic gendered undertones, make it an easy choice to mix, blend and match the colours together, creating an ambiguous concoction of metaphors, and, of course, the colour magenta.

MS. Can you share with me what creative techniques you use to create and connect others to your work?

NW. I work entirely digital on an Apple iPad with a program called Procreate. All of my devices work seamlessly with one another, so I have a clear workflow to bring final illustrations to social media. Tagging your work is the easiest way to connect to specific online communities, but it takes time.

Producing consistent work is also challenging, but it’s been essential in retaining engagement. A complete drawing at least once a week has always done the trick for me and it has allowed

A bare-shouldered individual is gazing into the distance. Their eyes are hollow, and they have no hair. They are grasping a giant dandelion, and some of the white puffs on the dandelion are blowing away. The illustration is done in varying tints of purple. me to connect with so many disabled individuals and foundations throughout the process.

MS. What does trust in the creative process mean to you?

NW. Personally, it means that with dedication, your purpose, artistic style

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and message will develop as you develop as a person.

Confidence in your ideas and mark-making cannot be asked for; it’s something to be learned over time.

If you can trust in the time you’re putting into the practice, you’re trusting in the process.

disconnection or isolation, especially during Covid-19?

NW. I’m a big proponent of using technology in an inaccessible world.

Whether you’re isolated due to disabilities or any uncontrollable reason, there is most likely a community tucked away on the internet that you can be a part of and find solace in.

Regular video calls are comforting as well, even if you’re drawing, watching a movie, reading, etc.

The technological presence of someone’s company is healing for feelings of isolation.

MS. What has been your most memorable creative and/or inspiring relationship, and what did you learn from it? This could be a relationship to self, to family, to friends and/or to your art.

NW. When I was diagnosed with a degenerative eye disease, I truly considered putting away art for good.

It was one of those restless teary-eyed nights. When I took a hard look at my future, I was either going to give up or put on my gloves and fight back.

I vividly remember feeling a burst of euphoria: Maybe I’ve found what we are all looking for: a purpose? That began my new relationship with why I create. It was a vehicle of expression, by taking a thought to paper. This new mindset taught me how to appreciate the eyesight I have now in the present moment, and the things I can achieve while I essentially ‘have the time’. It’s an unexpectedly amazing motivator.

MS. I can be reluctant to go out to evening events alone because it makes me extremely anxious and I can’t legally drive. This can isolate me from my community. You mentioned that you channelled your creativity when you felt detached from your community growing up. Does this still inform your current creative process?

NW. Yes, and I think it always will. I, too, am reluctant to leave the comfort of my home on a regular basis. For several years, I’ve fallen into isolation

to avoid the difficulties with interacting in unfamiliar settings.

Throughout this time, illustrating my experience was my way of speaking to the outside world from a safe distance.

But as time goes on, I’m dipping my toe in the water and exploring outside of the house again and I think the playfulness of my current work reflects just that.

MS. Drawing on your personal experience, do you have any advice for people experiencing

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MS. If you had to choose one of your illustrations, which one would most reflect you right now?

NW. Definitely an artwork I created called Lovebirds. I had a specific person in mind while illustrating this piece and the essence of the imagery is how I found comfort and safety in that person, who wholeheartedly accepts my disabilities and the vulnerabilities that come along with it.

While my eyes may be failing, the vision in my heart is crystal clear.

MS. Are there things that you love about being severely deaf-blind due to Usher syndrome? If so, what are they?

NW. The world is a much quieter and dreamier place. Like someone dimmed the room halfway, my surroundings are always relatively foggy and dark. I liken it to if you wore sunglasses and earmuffs inside, and your senses were muffled.

But the resulting silence makes focusing on my thoughts easier, in the most intimate and secure way possible.

A woman from the waist up is gazing into the distance. Her eyes are white and inquisitive.

Her hair is braided into two buns, one on each side of her head, and she is wearing a yellow shirt.

There is a miniature UFO on each side of her – one emitting a blue beam and the other emitting a yellow beam of light. Bubbles are floating around beside her. The background is a gradient of light to dark purple.

MS. What makes illustrating an accessible art form for you? Do you think that will change for you in the coming years?

NW. That’s a great question, and I get asked it often. How can you draw if you’re blind? Fortunately, I have a small degree of central vision in both of my eyes, so if I focus on things in the centre of my little window, I’m pretty adaptable at working with those limitations. Digital art is amazing for allowing that kind of access. I can select and zoom in on any area of my drawings with ease and there’s also the convenience of adjusting screen brightness.

Do I think this will ever change?

Only if my vision sharply declines, but I strongly believe in concentrating on what I have in the present moment before entertaining the possibilities of the future.

MS. What misconceptions do people have about you when it comes to being severely deafblind due to Usher syndrome?

What could they learn from you to change their perspective?

NW. The main misconception is that I’m totally blind. While that accounts for about 10 per cent of the community, I have retained a small degree of

central vision. It is my peripheral and night blindness that provide all the challenges. Similarly, I am not completely deaf; I can still hear limited frequencies. Funny thing is, I often get told, “You don’t look disabled!”

I think anyone in the deaf-blind community can attest to how well we adapt to our circumstances and surroundings – we’re all over the place, y’know!

MS. What’s your best self-care advice as a creative deaf-blind/ disabled person?

NW. Follow disabled creators online, read their stories and connect with them if you’re comfortable. Share your grievances and journey, and expose yourself to people who will inspire you to keep creating alongside them.

MS. What has your personal journey with self-love and selfacceptance been like so far?

Where would you like it to take you?

NW. I have hit rock bottom many times. Grieving through all the stages of an incurable disease, I didn’t believe I would make it back to the surface each time. It’s been a little over three years since my diagnosis and the fear never leaves, but neither does the enormous fire in my heart to embrace my condition. Sharing my drawings, writing and photos helped me form a more hopeful narrative for why things have to be the way they are.

I’ve learned to love the story that is being told and it’s a blessing to be able to keep sharing it.

MELODY SHOTADE is a creative, independent and inclusive producer and director with a disability, working on Wurundjeri country. She collaborates with Deaf and Disabled artists in experimental performance art and dance, inviting artists and audiences to create new dialogues with one another and explore new ways of expressing stories.

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A woman with blonde, chin-length hair is looking down towards the ground. She is posed from the shoulders up at a three-quarter angle. Her eyes are hollow, except for a third eye at the centre of her forehead. Her cheeks are rosy and defined. A dark blue sky is in the background.

A woman is sitting at a three-quarter angle towards the right. Her head is resting in her two hands – she’s contemplating something. Her eyes are hollow, and she has a purple, shaggy mullet. She is sitting near the edge of a rooftop, and the city is lined in the background. Bubbles are floating all throughout the illustration.

A woman from the shoulders up is directly facing the viewer. Her eyes are hollow, and she has a furrowed brow and an inquisitive expression.

Her left hand is raised behind her ear, and a hummingbird is flying next to her with its beak poking into her ear. The colours are a mixture of lavenders, blues and purples, and her cheeks are warm and rosy.

FINDING FREEDOM IN SEX WORK Words: MAYBE LEIGH Images: BAD GIGI

After experiencing intimate partner abuse, assault and gaslighting, this neurodiverse writer has found the perfect level of intimacy – without a relationship.

I’M 37. For the last 18 months, I have experienced adulthood fully compos mentis – in control of my faculties, and having a full realisation of my emotional, mental and intellectual state – for the first time.

Like waking up from a fever dream, I know who I am, who I want to be, what I want from life and how I’m going to live it.

This is, partially, a story about how I spent so long not in control of myself, and how the worst things that I have ever experienced happened when I tried to be ‘normal’. This happened when I tried to fit in, or do what was expected of me, or make the relationship work, or be the person my partner and doctors wanted me to be, no matter the misery, abuse, assault or medical mistreatment.

Learning to be happy involved rejecting it all.

*Name changed because the writer wishes to remain anonymous.

IT STARTED with I Dream of Jeannie – Barbara Eden as the genie who is blissfully, delightfully immersed in servitude to a handsome, dashing authority figure. I think a lot of people’s fantasies started with Jeannie in silks, midriff bare, wanting only to make her master happy.

In fact, a man told me fairly recently that it all went back to Jeannie for him.

I nodded emphatically – he’d instructed me not to talk unless it was to use a safe word – and he seemed to drift for a moment, thinking of Jeannie. And then he refocused and looked back at me, kneeling naked before him.

I smiled at him, because I liked him a lot, even if he was paying me to be there.

Probably because he was paying me to be there.

A year ago, I was new to sex work.

This man – and a lot of other men – seemed to appreciate my company specifically because I genuinely wanted to be there. There are a lot of sex

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workers who turn to the industry out of necessity or desperation, but that’s not me. I just like it.

I thought about Jeannie again later.

She had no interest in being something she wasn’t; she wanted Whatshisface and she was happy through service. He loved her for it.

Many people would consider the psychosexual imprinting that occurred watching afternoon TV on my nana’s couch at age nine inherently un-feminist.

Having spent most of my life in therapy, I can see now that it’s about as subtle as a brick to the face. A collision of kink and acceptance registered in my brain: if you step outside the boundaries of traditional relationships, you can be loved exactly how you are – you don’t have to change.

AS A KID, all of my school reports said things like ‘gifted but no focus’. Or ‘fails to apply herself’. At parent-teacher conferences, my teachers used words and phrases like ‘inattentive’, ‘excitable’, ‘easily distracted’ and ‘does not complete or submit work’.

I had a strong and profound sense from an early age that I was very, very smart, and very, very careless with it. It came from the adults around me, and I internalised it completely. I lived with a paralysing fear of failure that inevitably had failure as an outcome.

The words I learned just last year, that slid into place with a little click of recognition, were ‘executive dysfunction’.

This is a snapshot – you don’t get the whole picture of my life in a piece of writing that needs a beginning, a middle and an end. It’s the written version of forced perspective – a technique used in photographs or paintings to make the subject appear the way the artist wants you to view it. Objects in the mirror may be closer than they appear.

I am presenting you with an image that only reflects aspects of myself I consider relevant, or can bring myself to write about.

I am going to force your perspective to see what I want you to see. I need to move us forward in time, past the words ‘struggles to make friends’ from my teachers, to around age 14, the first time I tried to kill myself.

Shortly afterwards, I fell chronically ill: both physically disabled and mentally ill. The eventual realisation that the hopes and dreams I’d had for my life were totally out of reach felt like a monumental failure to meet expectations, and like I was just wasting my potential.

The words and terms that followed me after being diagnosed as mentally and physically ill were ‘treatment resistant’, ‘severe unipolar depression’, ‘chronic pain’, ‘acute insomnia’, ‘chronic fatigue syndrome’, ‘fibromyalgia’, ‘sensitised central nervous system’ and, eventually, ‘postnatal depression’ and ‘prolonged dissociation with features of psychosis’. The important one is ‘treatment resistant’.

At 17, I was put on a dose of heavily sedating drugs. This was followed by 20 compounded years of finding new and interesting ways to keep me sedated.

At 36, when I had to abruptly come off all of the drugs for the first time in my adult life because the alternative was total liver failure, it was like waking up. It felt like someone else had been wearing my body, making decisions and having relationships – cognisant but profoundly compromised.

I HAVE 20 YEARS of memories that feel like they happened to someone who wasn’t quite me. It was like another person wearing my face made decisions. I remember those decisions and the thought processes behind them, and I absolutely made those decisions – but they probably would have been different if I’d been firing on all cylinders. Compos mentis.

The words that were used over these 20 years were ‘tricyclics’, ‘antipsychotics’, ‘mood stabilisers’, ‘anticonvulsants’, ‘hypnotics’ and ‘anxiolytics’. See also: ‘chemical lobotomy’.

There are other details – the pivotal moments after the drugs stopped, the

haze cleared and I took stock of my life.

I looked at my partner of 10 years and realised he’d been boiling me like a frog in escalating financial, emotional and physical abuse and was subsequently trying to gaslight me into the belief that my emotional disconnect and abnormality was justification for his abuse, affairs and parental absence. I realised I could actually, you know, just… leave him.

I woke up one day and understood I’d accepted the abuse because I believed it to be a symptom of what was inherently wrong with me.

I didn’t want to build a life with someone and share my home and my bed in monogamous, vanilla tranquillity while riding into the sunset. I didn’t want a life partner. I didn’t want to grow old with someone.

I didn’t want to share my innermost thoughts and feelings – I found that invasive and distressing and repulsive but I knew that’s what normal people were supposed to want.

I just wanted to be normal. But I was not. I didn’t want any of it. He’d used it like a weapon to shame me into compliance. So I left him.

THIS YEAR, the words I finally said to my psychiatrist were: “I think I’m neurodiverse. I think I have ADHD. I think I have autism.”

When I was a child, girls didn’t get diagnosed. At 37, this was the point of convergence: what I had been receiving treatment for my whole life possibly wasn’t the cause of my lifetime of troubles. It had been overlooked. I had been overlooked by a medical system that held me in its grip from childhood.

Neurodiverse people, especially undiagnosed ones, lead double lives. The nature of masking, dissociation and mental illness makes reality unreliable. This constant, consistent performance while being simultaneously high-functioning in daily life confirmed a diagnosis of mental illness to medical professionals.

I’d been told my abnormality was a sign of sickness, and that my approach to relationships and how I felt about them was a symptom of mental illness.

I didn’t want to wake up with someone every day. I didn’t like the confronting emotional intimacy of

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long-term relationships.

It’s not that I had not ever experienced happiness in a relationship, I just thrived under entirely different conditions.

Like many young women, I had a desire to find freedom of expression and safety in service. Like Jeannie.

THE FIRST TIME I ever felt really safe and accepted was when a lover asked me to kneel; this forbidden want to give control to another was recognised and accepted.

I was going to let another person have enormous power over me, invite them to bind me and inflict pain and decide what was best, which you are absolutely not supposed to do as a modern woman.

It was a leap of faith, trusting someone else would catch me.

That was years ago, and it has haunted me ever since – that perhaps I could not feel happiness unless it was on my knees.

When I left my abuser, the first thing I did was turn to a trusted dominant to submit. To leave behind the picture of the Stepford wife and mother I was supposed to want to be.

In a moment of intense pain and pleasure, it felt like I had total clarity for the first time in my life: I am not who other people want me to be. That is okay.

My desire to be exactly as I am led me to sexual submission and ultimately sex work. It makes me feel real. I don’t need the money. I just like it. The money turns me on.

Here’s the part where you pull back and see the whole image – what I really want you to see.

I do not connect with others in a romantic or emotional way that society considers normal, and I spent so long trying to do it anyway and making myself miserable.

At 37, awake from a fever dream, I realised that ‘having it all’ for me means choosing not to have the things I’m supposed to want. Commitment.

Love. Dating. Romance. Sex without a transaction.

I AM LEARNING a lot about what it means to be neurodiverse.

Part of it is that I connect some very abstract dots and maybe see patterns that others don’t, or can’t.

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Since gaining control of my faculties, this has become an enormous advantage in my day job. I am highly in demand, I get a very lucrative salary and I’ve become known as an outside-the-box thinker. Neurodiversity offers specific advantages in the tech field. I think differently, and this is valuable.

Words were once used like weapons to make me feel like I was failing, did fail, was a failure. The moment I was diagnosed as mentally ill, everything I did or said seemed to confirm the diagnosis. I didn’t know how to describe my life experiences outside the lens of mental illness.

Over the years, dozens of medical professionals failed to pick up on ADHD and autism spectrum disorder, because I already had a diagnosis. If it never quite fit, then it’s because I just wasn’t responding to treatment. The words were: “You need to consider electroconvulsive therapy.” Other people my age planned for a future home purchase, but I planned for future shock therapy.

I tried so hard to fit into some form of societal norm – the monogamous, vanilla, committed, emotionally intimate relationship that I didn’t fucking want or like – to the point where that fuckhead finally raped me and I apologised to him for the miscommunication about my total lack of consent while I was sleeping, and it happened more than once. This scenario would make anyone feel pretty depressed – living a life they don’t want with a person who doesn’t like who you are and will just rape you about it. I don’t write this to shock, I write so you understand.

I told multiple therapists I had been raped and all of them attributed it partially to my mental illness and encouraged me to “make the relationship work”. My mental health professionals were complicit. My story – neurodiverse people being abused and assaulted and gaslit about it by the professionals who are supposed to help them – is not unique.

My background of chronic illness helped those same mental health professionals justify the chemical lobotomy, as the sensory issues of neurodiversity were assigned to pain sensitivity. The manic reactions to

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certain types of medications were, in retrospect, probably not a state of mania but hyperactivity – the H in ADHD – breaking through the illness and depression when I was given any type of drug that had an uplifting effect. The compulsive behaviour, the hyperfixations, the stimming, the distractibility and the difficulties maintaining meaningful relationships – all attributed to mental illness.

DO YOU SEE my perspective?

I am 37 years old and learning how to be a whole person. I have children. I have trauma.

I struggle to understand what was real, to separate what was mental illness and what was a symptom of unaddressed autism or the long-term effects of trying to cram my wrong-shaped brain into a tiny little square box marked ‘acceptable’. I tried so long to be normal, and it made me want to die. I’ve stopped now. I’ve stopped wanting to die. I want to live.

This is the wrong-shaped object in the mirror that is so close now. It presses up against me all the time, now that I have emerged from the fever dream and experienced happiness for the first time in my life. It emerges after taking control of my own life fully compos mentis, whether that’s my day job or kink or sex work or having longdistance queer platonic romances with other neurodivergent women like me.

It’s choosing not to try to be what other people want – choosing to be Jeannie, who is entirely herself.

I don’t have to be someone others accept or approve of. I don’t have to try to be something that feels worse than death to make others feel comfortable – after all of that.

I have not displayed any symptoms of mental illness for over a year.

I’m free. I’m awake, in full control. I know who I am, and I like myself.

Some are working towards building a community where we love, care for, hold and strengthen one another.

COMMUN

NITY CARE Words: JULIA ROSE BAK Images: JEWELS STEVENS

IN 2002, when I was 9, I was diagnosed with an autoimmune disease and a mood disorder. I remember a few things about those months: blood in the toilet bowl, waiting rooms in beige, wooden toys, and watching my mother’s tired, wet eyes as I was wheeled into an operating room.

As a child, I didn’t understand myself as having a disability. I understood myself through the language of disease – as in “a harmful deviation from the normal structural or functional state of an organism”, according to Encyclopedia Britannica.

I still recall the handful of conversations I attempted to have with friends at the time, palms up and outstretched, imitating the length of inflammation throughout my bowel. I repeated what words I knew: ulcers; colon; chronic – which is to say, there is no cure.

It wasn’t that people were unkind, or unsupportive, but I knew that they didn’t – couldn’t – understand, and I didn’t know what to do with the feeling of loneliness that ensued.

I didn’t recognise my experiences as those of a disabled person until I was 20 years old and integrating into the inner-Melbourne queer scene. Being seen by a group of like-minded, weird and wonderful people taught me that love and longing are antidotes to loneliness. Despite variation in our histories, I sought solace in what we shared: an otherness.

Following a six-month bender that culminated in a bad case of glandular fever and a psoriasis flare-up, I was forced to confront what we did not share – what able-bodied queer people, much like able-bodied straight and cisgender people, could not understand.

I was clambering to stay seen in a scene that relied on mental and physical

presence, while my mind and body increasingly needed to withdraw. No matter the occasion, whether a club night or a demonstration, events I would have previously attended with relative ease were suddenly inaccessible.

I could not be held by a community that I could no longer access.

I watched from the edges as other queer people I knew realised they had a disability, became disabled or experienced an exacerbation of their pre-existing disability. I watched as other queer people lost access to their communities. It was here that I discovered the shared legacy of loneliness and isolation among queer people who also experience disability. It was also here that I built relationships and community with these people.

SIMILAR community-building led to a group of Black, brown, queer and trans people forming the Disability Justice Collective in the San Francisco Bay Area in 2005, consequently establishing the framework or movement that is disability justice.

Disability justice came about in part as a response to the disability rights movement, which historically situated disability as a single-issue identity.

The disability rights movement centred people who could achieve status and power through a legal, rightsbased framework without addressing how disability intersects with race, gender, sexuality, age, immigration status and more.

Members of the Disability Justice Collective instead sought to carve out a space that would centre disabled people of colour, immigrants with disabilities, queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who were houseless or incarcerated,

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and people with disabilities who have had their ancestral lands stolen, among others. Disability justice understands how ableism was created and emboldened in relation to other oppressive systems, and how ableism is inextricably tied to histories of settler colonialism and capitalism.

As a result, disability justice is an inherently intersectional and anticapitalist framework, borne from an understanding that we cannot protest ableism without protesting the systems that allow ableism to prosper. These are the same systems that enable racism, sexism, transphobia, whorephobia, Islamophobia, ageism and prejudice based on criminalisation, incarceration or immigration status.

Founding members of the Disability Justice Collective Patty Berne and Mia Mingus also came to disability justice in response to the ableism they were experiencing in progressive and radical spaces.

Recognising a need to address ableism in these spaces, Berne and Mingus engaged in relationship- and community-building with other queer and disabled organisers and cultural leaders, most of whom were also people of colour. They saw a need to build something that didn’t exist at “the margins of the margins of the margins of the margins”, as Mingus described it in a keynote speech she gave at a Disability Intersectionality Summit – a space that could hold the complexities of our identities and our histories.

Photographs supplied by the writer

THOUGH I hadn’t yet discovered disability justice, the conversations I was having with loved ones in the queer community echoed many of the sentiments I would later read about in my disability justice work.

Too disabled for the queer

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community and too queer for the disability community, we came together to grieve, love and care for one another – something adjacent to family in our recognition of each other’s histories.

In these moments of connection, I experienced what I would come to know as ‘access intimacy’, a term Mingus describes in her blog Leaving Evidence as that “elusive, hard to describe feeling when someone ‘gets’ your access needs”. For me, this looked like having people accompany me to specialist appointments, organise our transport, pack us snacks and hold my hand in the car. It looked like arriving at a gathering and being greeted with a chair and a glass of water. It looked like a vegetarian lasagne dropped at the door. These seemingly small gestures let me know that I was loved, and that the people who loved me were listening intimately to my access needs, and I to theirs.

Access intimacy isn’t unique to disabled people – anyone can experience it – but it is a kind of intimacy that many disabled people will be familiar with. It doesn’t depend on a politic, but on a willingness to wholly love and respect one another, and to trust each other in how we articulate ourselves.

Experiencing access intimacy in my small but unfathomably kind and daring queer and disabled community led me to the work of Leah Lakshmi Piepzna-Samarasinha. Here I discovered collective access – access as “a collective responsibility and pleasure”.

Described as a toolkit for people in communities that looked like mine, Piepzna-Samarasinha’s essay collection Care Work: Dreaming Disability Justice outlines a framework for understanding the kind of movement towards collective access and collective liberation that I had long been in search of.

“I have experienced disability justice in action, which is to say that I have experienced love” 90

Though still in its pupa stage, the Disability Justice Network envisions a world where disabled people – including queer disabled people, Black and brown disabled people, disabled people of colour, criminalised disabled people, incarcerated disabled people, disabled drug users, disabled sex workers, and any other disabled people who experience oppression at multiple axes – are wholly loved, supported and liberated.

It was here that I learnt names for the acts of love and care that I had been sharing with my community.

With access to these tools, I came into conversation with more and more people whose experiences mirrored my own. Together, through these conversations, we arrived at a desire to give the disability justice movement a home in Australia.

As both Indigenous and nonIndigenous disabled people living in Australia, we wanted to pay necessary attention to the inherently disabling nature of dispossession and displacement, including the decimation of land, water and skies, experienced

by Aboriginal and Torres Strait Islander peoples across this continent. We also wanted to pay attention to the unique experiences, pain, strength and resistance of First Nations people who live with a disability.

Building towards a community in which we could love, care for, hold and strengthen one another – “a vision born out of collective struggle”, as Berne describes it – we established the Disability Justice Network in Australia.

Disabled people across Ngunnawal and Ngambri, Wurundjeri, Bunurong, Gadigal and Kaurna lands came together with a collective vision: collective access and collective liberation.

AS A CHILD I experienced a loneliness that still causes me great sadness to recall. I will likely always grieve the parts of me that I sectioned off, scared to intimately show myself to people that I knew could not understand. But I know now what it’s like to be seen in my entirety.

I have experienced disability justice in action, which is to say that I have experienced love.

Though I know there are many disabled people – including disabled children – who are still sitting with their loneliness, I can only hope that continuing to dedicate ourselves to disability justice means dedicating ourselves to a world grounded in collective access, collective liberation and love.

JULIA ROSE BAK is a queer, Māori-Polish writer, survivor and abolitionist based in Narrm, so-called Melbourne. Their writing centres on trauma, collective healing, care work, and their experiences growing up with chronic illness.

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MISREADING

Words: PATRICK GUNASEKERA, WITH KITTY & MATTIE Images: MARZIYA MOHAMMEDALI

MULTIPLICITY

Loving life with dissociative identity disorder is a powerful act of resistance, subversion and self-care – even when hidden in plain sight.

Dissociative identity disorder (DID) – like most psychiatric labels – is a relatively recent classification of a personal, cultural, spiritual and/or trauma-related experience as a medical or pathological experience. DID includes a spectrum of dynamic mental realities that transgress a singular and fully integrated sense of self and incorporate multiple, separate ways of perceiving and relating to yourself and the world with one body-mind. Earlier psychiatric literature referred to DID as multiple personality disorder. Today, many but certainly not all people in the DID community self-name as systems or multiples, and embrace system pride.

Demanding, triggering day. Low spoons, home to, front door, heavy keys jangle.

Sparkle keyrings clicking to hears Dmitri, he plays keys to merry. Wow, these are keys to our home: exclaims.

Switches he into my boy hand. Open door, then music play boogie giggle don’t worry about today, just dance. Small feet steady soothing rhythm whole world of, through nonchalance Dmitri.

Then he content, goes away. I switch return.

Shadow looming, sharp fears, work to finish – can’t think. Mattie asks: So did dinner have you fridge leftover so?

Chest expands, head held higher uplift – she wishes take over to. I tie hair two big side buns colourful scrunchies, she to the front comes kitchen takes, chops vegetables stove on, figures out, upbeat to.

Then crumple, numbing insecurities, memories, crushed feeling, dread: confusion emptying body, dry, frail, defenceless.

Kitty commands, sympathetically, so: Stop fussing, you haven’t brushed hair three days dreadful. Don’t let anyone so come between hair and you – not even this.

Streetwise hands enter mine, take bathroom to, untie detangle comb coconut oil her long curls through. Slowly, tenderly, brush out stressors. Dig reflect understand, breathe, return.

Frizzy black tresses she styles them to big retro feminine powerful. Laugh see remember how I safe, capable, resilient.

Dmitri, Mattie, Kitty know me well, like old friends we. They live with me, share with me home wardrobe life and care, colourfully merrily.

Also all share they my body-mind. They wouldn’t be at all without my body-mind, nor they without my trauma surviving cherishing them so.

The value of madness should determined, decided, by each mad person be.

For me, madness can so joyful meaningful expansive be. Skilful dynamic negotiation of care, centring so agency healing pleasure consent.

Mad brains luminous broken mirror of our lives like.

Such many mirror pieces reflect multiple places perspectives people into, but if single mirror piece hold to alone then all make sense so whatever should see when one looks through.

Neither our mirrors, nor so broken pieces, our choice ever are.

Such precise shapes cracks to image reflection our lives, such vivid intricate fingerprints of us. Fragmented faceted so – like jewels, like sunlit water.

Sauntering sliding switching – here my multiplicity is ever misread through such singular identity assumptions, and integrated identity systemic privileging favouring to body-minds.

But truly we are so a team, and such thoroughness usefulness realness of us is so never erased by illiterate neurotypicals, or by unwritten our own voices.

Inventory avatars for the real world to, anthology survival stories of many tongues to.

Dissociation so alternating blueprints for survival to conscious mind take care.

Dissociation so how access we the world through bodies outlooks identities to protect us external harm from inside.

Such natural us to change how when so world changes.

Such natural grow us defences in so unsafe punishing world.

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And such too natural formidable beautiful radical how we so love, nourish, protect here systems teams alters madness our own ways do.

Dmitri 14-year-old boy: considerate, sensitive, quiet. Reminds me so of magical only child creative caring middle-class family. Somewhere of recycled parchment picture books, organic wooden toys, fresh fruit pies.

Dmitri pondering prolific imagination but holds he innocence of straightforward privileged graceful world. Wealthy of love curiosity adventuring – he comfortable, very not like me.

All wants he learning, growing, beautiful interesting things. All wants he to not safety stop, to not security stop.

When Dmitri real in body, everyone critical cogent adult voices cloudy echo underwater. Handles responds he complex threatening world with gentle think, careful move, calm be.

When adult burdens external risks to unsupported unsafe I be, my caring sheltering nurturing to Dmitri protects promotes carefree untroubled boyhood his to amid.

He wild hair craftiness learning of real world bravely, heart too big too loved for afraid be any at all.

From racial fatigue inaccessibility chronic stress loading I shoulder, gentle he teaching me inside how safety can feel for child.

Mattie’s identity, confidence, conviction gathered she so British chick flicks many – St. Trinian’s (2007), Wild Child (2008), Angus, Thongs and Perfect Snogging (2008) very so.

Growing up, at such heart core had I resonated connected understood young protagonists so, bullied excluded judged and full knowledge voicing their lives didn’t need shouldn’t be so painful lonely unjust. But brilliant protagonists then also scheming sneaky subversive transform – everything better end movie by so cleverly just right they all could.

Such awed inspired uplifted me so. Such needed proof roadmap possibility I, to all better my own life school family community could perhaps make.

Childhood British movies such depicted young white women can fix anything so: pimples, love triangles, divorcing parents, anything. Imagine represented they utopic made-up lives so pretty so pleasant, matching tea sets botanical neighbourhoods printed shopping bags, even as teenage lives falling apart.

But too beloved stories shown white non-disabled skinny heteronormative kids only could such successful self-directed happy ending so be.

Mattie me try so stained op-shop sweaters roadside hairclips classy successful self-assured so attain. Such endless representation cultural wells so draws she privileged positioning self-belief certainty narratives to her strengths.

Such so Mattie dissociative amnesia internalise I cultural conditioning so of brownness not real not arduous, disability not real not precarious, queerness not real not unsafe.

Where internalised narratives true body positioning I cannot so access embody such successful self-assured taking on the world safely, Mattie comfortably conclusively permission existence assert, pull something together push through in body instead.

Mattie spark vivacity movement play believe yourself even worst times to. Chin up she, anything possible she, dreams do come true in bizarre ways she.

Such is her well-off whimsy where her genius thrives.

And such through distance disconnect relief I racialised ableist queerphobic violence true positioning my body from, so does Mattie fill feel trust embodied we doable fixable manage ourselves better can see – productive, focused, optimistic.

Voice such Mattie’s toxic positivity: forget so systemic struggle your life is to.

Here such her encouragement energy warmth do sedate intrusive recurring unavoidable triggers I to white happiness, white blessedness, white logic responsively protectively comply.

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Then Kitty fictive alter be – alter whom so originated from source of fiction.

Fifteen age I or so when first saw movie Breakfast on Pluto. 2005 movie written directed Neil Jordan, 1998 novel Patrick McCabe based, 1970s fictional Irish small town, North Ireland, then London set.

I had such admired appreciated main character so, Kitten Braden, brave determined kind no matter her circumstances to. Rallied she I, to be tougher sharper tender myself wherever in face of danger.

Character Kitten Braden represent so agency perseverance self-determination of what means she has. Such her story sincere place had of coming-of-age Irish identity political literature to her time.

But trans representation here reductive appropriative, uncalled-for very so.

Protagonist such cisgender actor cast, orphaned houseless trans woman travelling searching her lost mother for, builds she home family belonging through countless perilous places amid the Troubles so.

Here, cisgender men entitled speculate narrative device trans femininity as hypersexual, naive, unruly. Story hers progression through transphobia risk vulnerability violence loss – only.

Such legacy Breakfast on Pluto so carries today be suffering, caricature, character study like trans identity portray.

Such negligent, disrespectful to trans community. Own voices silenced, devalued, spoken over; compliant systemic cultural injustice real trans women to.

Could never I so support, endorse such creative work of cis entitlement trans fem character write.

But in such unwarranted transface casting Breakfast on Pluto – here had seen, recognised, affirmed for I something so deeply awfully what happened own bodymind as child to.

Cillian Murphy actor had so I first known Inception (2010), In Time (2011), glacial brutish masc action hero antagonist roles.

Then Breakfast on Pluto such casting Kitten Braden he, Murphy masc actor body reconstructed on screen, to male gaze defenceless sexualised objectified.

And too such very same characterisation performance – Cillian Murphy Kitten Braden speaking back resisting asserting agency strategy, and such such joy of survival adventure own life building persevering.

Such cinematic representation of Murphy fetishised fighting surviving carefree together one man’s body, mirrored so my body-mind’s sexual trauma of fetishised, fighting, surviving, carefree as boy child had been.

Patriarchy teach survivors so: man masc sense of self such in control, indestructible, safety ever only our bodies identities can be. Then believe we such childhood sexual trauma to mustn’t be – couldn’t have – not true, if real man we so.

But though lucid assault details had conscious brain so long time buried locked away, body-mind such still so fought, resisted, buoyant agency built however I could.

Cillian Murphy performing Kitten Braden was first time I so seen put together understand: yes, just like victimhood mine has too always been, boys men can be so objectified and so harmed, and so deliberate capable clever happy so surviving.

And this so power Kitty alter hold with me.

Watching over observing, cordially firmly proficiently handles she so sexualised objectified gaze others engulfing small body where wanted not, disorienting distressing I to.

Tumbling, pecking, bursting – she such to protective persistent precaution, then resolutely reminding of what importance I to grow to dream to have fun amid so restless vigilant surviving body-mind.

Where need I so elegantly sympathetically to safer speak up speak back, brown, crip, political, visible advocating, Kitty’s charisma tranquillity quick-wittedness so melts such threats such fear such gaslit self-doubt.

When such sexualised sensationalised unseen dynamic trigger I to body unsafe abuser nearby shut away protect, Kitty remembers so: here my agency, here my voice, here my perseverance, strategy, faith can I too and ever have been.

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Repeated folds of trauma drape to brain, impact zones of body violence gender race so placed hidden sunken buried and. Then press close to forget so pretend not so look away so.

Systemic power hierarchies, immediate communities, perpetrators enablers insisted demanded such we speak not resist not believe not our harm struggle trauma.

But always, always – body-mind so speaks, body-mind so resisted, body-mind so knows.

In such fragmentation of trauma stories such, fragmentation identity does to.

Boldly, finely, tangibly so rise we between memories: moving, healing, living, each person alter shadow, such place reason be here to.

Each such granite gossamer reflection trauma world contradicting narratives, and too each such fertile needed cherished and real.

Survivors ever have always agency ours built from survival strategies. And masking passing disguising our true multiplicity ever mad heritage living histories strategy ours been.

Bravely our switches bourgeoning quivering so, in shadows narrow paths behind between beyond – urban legends horror movies clinical discourse institutional silos.

Here so visibility of dissociative alters, such vulnerability violence surrounds submerges silences. Intuitively recognising, reading, finding our community – our stories – our lineage have we so journeyed towards slowly patiently unspeaking.

Yet, such absence underrepresentation multiplicity of chosen visibility: knows our mad surviving bodies to warmest truest essence of us.

As wherever so choose we be misread, wherever so choose we mask conceal – here so enduringly, our agency kindles.

Mad survivor agency, mine too inhabits invisibility. Mad survivor choice to disclose, to hide, to switch such bubbling expanse so energy, so clarity, so hope feels of agency.

Here such embracing, listening, respecting; so quietly mightily resist harm fear, we do.

Here such nurturing, soothing, empowering; so care skills critical nuanced effective, we do.

And truly, madness survival perseverance such value not ever determined, decided, in relation to visibility to unmasking, to society psychiatry charity so gawk enamour interfere our helpless voiceless value they so impose.

Many all my brain here such comfortable meaningful gathering dwelling mediating inside, younger selves formative memories survival strategies of my life.

Such their own exceptional people be – yet profoundly, immeasurably they have so everything given for me. Through such surviving, healing, non-violence living, I too so joy, importance, safety give to them.

Such my alters private, personal, powerful – no-one else’s business benefit for.

Here so home theirs be. Here so loved, so seen they are.

Such too misreading multiplicity for now our armour, our choice, our own resistance be.

PATRICK GUNASEKERA is a writer, performer and multi-disciplinary artist of Sinhala migrant heritage, living and working from Whadjuk Noongar Boodjar. He is an arts journalist with Seesaw Magazine, and has published neurodivergent life writing and diasporic sex poetry respectively in the anthologies Growing Up Disabled in Australia and To Hold the Clouds.

This piece was written with two of his current protective alters, Kitty and Mattie, who prefer to keep to themselves but are delighted to be credited here.

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Photographer and Creative Director: Nelly Skoufatoglou Producer: Hailey Moroney

DESIRE AND DISABILITY Models: Aurora McCaig, Cherie Louise, Gemma Adby and Tayla Collison-Childs

Disabled bodies are pathologised, politicised and judged relentlessly. In this editorial, we celebrate the sexuality and beauty that resides within the disabled community.

This dreamscape of whimsy and eroticism was artfully captured

by Nelly Skoufatoglou over Zoom in collaboration with models Aurora, Cherie, Gemma and Tayla.

Words: Jasper Peach 100

Sex is such a taboo subject that when it’s joined with the word ‘disabled’, people jump to assumptions instantly. I am a 28-yearold disabled woman and I love to have sex.

And yes, I can have sex normally too!

Tayla Collison: @my_catheter_and_me

Being diagnosed with a disability, and an incurable and degenerative one at that, only amplified the challenges I had with desire, pleasure, relationships and selfworth.

Aurora McCaig: @rora_mac

There is a big fear and misunderstanding of disability and desire and how the two interact with each other. Many will imagine the two concepts being as far away from each other as possible. For me, I have never seen it as an issue and see the beauty in the two together.

Gemma Adby: @gemmaadby

Living intentionally with the experience of bipolar, it’s possible to find healing in parenting.

Reparentin Words: ROSE BROADWAY Images: LAUREN BUCHNESS

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BEFORE HAVING CHILDREN, I had no idea how fundamentally I would be transformed. Family emerges from the space between people. It is where we find the intersection of our hope for the future, a reckoning with our past and the simple complexity of presence, right where we are.

When I gently, shakily, took my child’s hand to introduce them to the world and to themselves, together we began to unfurl into a composition of identity and human experience.

This path is both ancient and new. My ancestors, my experiences, my relational history and my connection with self – along with my physical, political and social environment – forced me to reach deep into the marrow of my being to define and articulate the intangible. These parts form and shape me continuously, giving my life a unique structure and fluidity. They inform and shape how I parent my children, whether I am aware of it or not.

In my everyday life I realised the possibility of growth exists within each moment. I began to ask myself Why? and What is the intention? when I had the presence of mind to pause and reflect. Carving out space between action and reaction created an opportunity to bring intention and curiosity to those moments. This space was not always filled with grounded intention; often it was drowning in guilt, anger and despair.

My transition into parenthood felt dangerous, wildly confusing and untethered.

Nothing felt certain or reliable anymore. I found myself angry and disconnected from myself and those around me more often than I’d like to admit. I struggled to latch on to any secure ground while I questioned who I was.

GROWING UP AS A fat, queer person experiencing the world through a bipolar lens has profoundly shaped who I am and how I parent my children.

My community, when I was a young person, was Western, capitalist, white, conservative and religious. I had enormous privilege and still it felt like everyone constantly indicated that my body didn’t look the way it was supposed to, my mind and behaviour were simultaneously too much and not enough, and all the milestones of my life were predetermined. This messaging came from those closest to me, as well as complete strangers and the media. We take on the flavour of what we marinate in. There was no getting away from it, and it became part of my internal belief system.

The people closest to me, who I looked to for safety and guidance on how to understand and find my place, acted with love and the best of intentions. They wanted me to be successful and happy in the context of their own metrics of success, defined and outlined by them and those before them because that is what they knew. That was their lens given their own complex, intersectional and intergenerational context. I believed that if I worked hard enough at looking, thinking and being within these rigid, foreign parameters, I would eventually feel peace and ease in my relationships with myself and others.

This grand performance came at great personal cost. I tried to distance myself from my fat body, constantly trying to shrink, hide, overly feminise and apologise for taking up space. I lost trust and connection with my mind and nervous system, which flip-flopped between vibrant, unsustainable passion and productivity, and despairing exhaustion and dissociation.

The early nuances of queer attraction and identity were lost within me, suffocated underneath a blanket of internalised cis-heteronormativity. Fat, bipolar, queer: I strained to exist outside of my reality, yearning for a fantasy created by the expectations of the world I lived in.

The strain was exhausting. Crucial parts of who I was were reflected back to me as disordered and unnatural. I internalised that perspective, seeing myself as dysfunctional, worthless, broken and shameful. I desperately wanted to be perceived as capable and valuable to others, but I had no sense of who I was or what I wanted. Feeling trapped and losing a sense of how to move forward, my beautiful, clever mind found a peace of sorts in dissociation from a felt sense of my embodied mind. Fear sat in the driver’s seat, meaning my connection with others was an ongoing dance of ‘come close, go away’.

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Our nervous systems are constantly remodelling themselves based on our experiences and interactions. Mine became wired for vigilance and found cues of danger everywhere. Being and existing had nothing to do with my authentic self – I was wide-eyed prey, pouring energy into being chill and pretending nothing was wrong in a world of predators.

I DID NOT know a different way to exist. That changed, and I changed, when I started to consider bringing children of my own into the world.

My role in supporting tiny humans to navigate the world and themselves drove my own journey to self.

I have trained as an occupational therapist and I specialise in social, emotional and sexual health and wellbeing in my work. I went through an intense period in the 18 months leading up to the birth of my first child creating a sexuality and relationships education (SRE) program for children and their significant carers with a dear friend and colleague. The process involved defining and articulating the components of building relational safety, connection to self and others, and cultivating intergenerational relationships between children and their caregivers.

Young children are naturally open and curious as well as being totally dependent on caregivers for their nervous system regulation, to be held and soothed, and to develop a sense of safety and connection.

How was I going to offer this to my children when I didn’t really know how to be or do it for myself? It blew my world to pieces, and – with a sense of urgency and desperation – I began a transition into who I was and how I wanted to be in the world, for them.

I had all that knowledge and experience in a professional context.

You can know all the steps, intellectually understand the process and even guide others through it, but having your own experience of walking the path is different entirely.

I find truth and humour in the saying, “We teach best what we most need to learn.” I realise, looking back, that even before I was pregnant, I was trying to define how I wanted to care for myself and my children.

MY PARTNER AND I are two unique and very different people with varying upbringings and frameworks for understanding and navigating the world.

Our relationship is a shared space between those two realities.

Co-parenting forced us to celebrate and negotiate our differences and arrive at a joint understanding of how to approach raising and guiding these tiny humans who are on loan to us for a while.

We “squabble”, as my firstborn phrases it, a lot. We are often passionately engaged in debate over many topics, searching, negotiating and redefining some consistent, essential principles of how we choose to parent our children.

When we became parents, we wanted to avoid inflicting harm and suffering as much as we could with the resources we have. We also understood that this was impossible to avoid entirely, and so we wanted a joint understanding of what repair and holding space could look like for ourselves, for each other and for our children.

THIS PROCESS OF becoming parents started long before our children were born; indeed, it began when our parents were being parented, and when we were being parented ourselves. We were both raised according to traditional, fear-based parenting strategies.

It continues to take a lot of blood, sweat and tears to choose a different way and unlearn that conditioning in my relationships with myself, my children and my partner. When controlled by fear, it’s hard for anyone involved to feel safe and secure. Finding safety within myself and my relationships with others has opened up space for intention, patience and connection in how I want to raise my children to be exactly who they are.

One of the many robust discussions my partner and I had was about names, both given and surnames. We rested on the understanding that names are an acknowledgment of our ancestors and where we come from. They are also a gift – one we hoped our children could grow into and feel comfortable in and around. Who did we think we were to define this for our children?

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We could see the potential for a name to become limiting or uncomfortable, and we wanted to avoid that if possible.

It felt important to give our children gender-neutral names – we were keenly aware of the risk of causing unintentional harm or suffering as they developed a stronger sense of self and their own voice in the world.

We felt that their names provided the opportunity to reflect both of us as parents as well as supporting our children to feel connected to each other and their family before them.

Their androgynous names paired beautifully with a new surname they share as siblings.

Through these conversations and many others, we realised how much of the time we spend growing and bringing young babies into the world is spent on outdated narratives.

Everything was being classified, weighed and measured – by people we didn’t really know – and held against a ‘universal standard’, even in utero. We talked a lot about our own and others’ fears, and about risk and intervention, but not as much, at first, about whether being guided by the internalised fear of others was serving who we wanted to be as parents.

Talking with people about what genitals and DNA profile our child had seemed to be loaded with the implications of how our children might be and exist in the world. This suddenly felt absurd and incongruent with how we wanted to raise our children.

We realised that it was easy to get overwhelmed with big concepts and ideology, but it all boiled down to being in the ‘now’. Big concepts were distilled into small moments and the invitation to do things differently.

I don’t know if I’m making this sound easy – it isn’t. Learning to love and care for my children, and for myself, has felt radical, dangerous and unfamiliar. I often find moments of joy morph into grief and sadness.

I am learning that these tender parts of ourselves that we most want to

fight against or run away from are the parts that need the most space and attention. All parts need to be seen, held and acknowledged with curious, gentle compassion. Holding this space for myself – reclaiming my identity and wholeness – mirrors how I can hold and support others in this way.

MY RELATIONSHIP with myself and my relationships with my children have developed in parallel as we grow boldly into the people we are.

Slowly, I am bringing open, curious and loving attention to unfamiliar parts of myself that have been numb for a long time. I am getting acquainted with my nervous system and my body. It is a revelation – bodies learn to scream when we cannot hear their whispers.

Letting go of ‘this is who I/they should be’ and resting into ‘this is who I am or they are in this moment’ is a powerful shift. Life is messy and vibrant, and we’re all muddling through and doing the best we can with the resources we have at any given moment.

I am learning to let go of the map I never asked for and take time to explore the expansive, diverse, dynamic terrain of who we are as humans.

Navigating and connecting with this terrain in myself invites hope and opportunity for me to support my children to do the same for themselves: to find security and peace with who they are, all that they are, in a world that will often ask them to be something other than that.

This is the work. The tireless, glorious work.

ROSE BROADWAY is living and working on unceded Dja Dja Wurrung, Girai Wurrung and Gunditjmara country as an occupational therapist, specialising in social, emotional, sexual health and wellbeing. They are a fat, queer parent who sees and feels the world through a bipolar lens.

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MEDICAL Words: TUESDAY ATZINGER Images: FUSCOUS FURY MEDIA

RACISM Marginalised communities are vulnerable to neglect and outright maltreatment in healthcare settings.

WHEN I WAS an infant, living in Austria with my family, my pregnant mother was taken to hospital after one of her prenatal appointments.

Once there, doctors confirmed a grim reality: her baby had no heartbeat.

And then – nothing.

Senior clinicians brought in a cavalcade of junior doctors to examine her, to study and review and explore what to do in such a situation.

In the beginning, my mother was told they were waiting for natural labour to begin. When it didn’t, they should have induced labour.

But they didn’t. My Black mother was confined to the same space for several days, with her baby deteriorating inside her, while white doctors and white students examined, studied, reviewed and explored, all while ignoring the health crisis unfolding in front of them.

Their ‘care’ resulted in a severe viral infection, which left her with organ damage and a chronic illness.

My mother has only recounted her ordeal in full a handful of times; usually, she skirts past the details, and just whispers, hoarsely, “They tortured me.”

She told me this story in the same way she told me how to behave around police, how to keep myself safe. To be unaware of the intersections of my identity was dangerous.

At 15, I fainted after a tennis lesson and my parents rushed me to a hospital in Harare, Zimbabwe.

The doctor attending to me asked me, curtly, if I was pregnant. I assured him it wasn’t possible. Frowning, he asked my parents to leave, then pressed the issue more aggressively. Bemused and a little frustrated, I asserted that I had never engaged in any activity even remotely conducive to conception.

He scoffed and booked me in for an ultrasound before ushering us all out of his emergency department. My father was furious, I was embarrassed and my mother was quiet.

When the ultrasound confirmed that I was very much not infanticipating, I hobbled angrily back to the emergency department, my father in tow, to show the doctor my results. He informed my parents that I must have faked having fainted, and was adamant in his refusal to investigate the matter any further.

I began fainting more regularly after that, and, over time, got used to being told it wasn’t a big deal, that it was likely a once-off, that I should hydrate more.

DURING MY undergrad in England, my mental health deteriorated so sharply that I reluctantly checked myself into hospital under the advice of my crisis team.

The paramedic who sat in the back of the ambulance with me on the way from Lancaster to Blackpool comforted me the whole way there. He was very kind. He gently assured me that I would be taken care of, that these things happen, that I had made the right decision, and that I would be looked after.

The ambulance ride did more for my mental health than anything in the six months preceding it, and when I finally had to step out into the cold, I began to sob openly.

I cried myself to sleep in the mental health ward. I couldn’t believe things had come to this. By the next morning, I had a more hopeful outlook.

The resident psychiatrist determined I was struggling with depression, and prescribed me an antidepressant. I nervously reminded him that I was on mood-stabilising medication, because I had been diagnosed with bipolar disorder a few years ago in Zimbabwe, and had been told by multiple psychiatrists not to take antidepressants.

I was given a somewhat bored look accompanied by a long-suffering sigh.

I readied myself for the exceedingly patient and ploddingly simple explanation that was coming my way.

As it turned out, I couldn’t possibly have bipolar disorder, because the way bipolar disorder is diagnosed in Zimbabwe is more of “an Americanisation of the diagnosis”.

Things were done differently in England, ergo I didn’t qualify, and it was best not to chase after a diagnosis just because it sounded “romantic”.

Cowed, I obediently took the pills I was presented with the next morning.

I became manic and delusional, which then spiralled into psychosis.

My hospital stay was transmuted from voluntary to involuntary, and I spent the last two months of 2011 there. Romantic.

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BY THE TIME chronic pain became a significant issue in my life, I had moved to Melbourne as an international student.

I spent years trying to explain my symptoms to a rotating cast of doctors and specialists. Some lectured me about drug-seeking behaviour, some reasoned it was psychosomatic and some questioned my use of a cane, but none of them explored the issue any further.

By this time, it had become standard practice among my queer, disabled and chronically ill friends to accompany one another to medical appointments for moral support. We were all so used to being dismissed and going unheard that medical appointments had become a source of anxiety and, for some of us, trauma.

It took four years of persevering to finally find a medical professional who took me seriously – it turned out I’d had a form of inflammatory arthritis all along.

The triumph and validation of a diagnosis, however, came secondary to the affirmation of self I had cultivated through my cane. It had gone from a source of shame to one of pride. I made it match all my outfits, and I felt dapper and fashionable, even. I made it mine.

I grew to love my cane so much I wrote an ode to it, which I performed at a fringe festival in 2020. My performance had a desperately hopeful quality to it – I spoke passionately over Zoom about how my cane empowered me to go where I wanted, how I wanted, as lockdown restrictions were easing.

Glorifying my cane so publicly was cathartic, not only in terms of my relationship to my own mobility, but also as a defiant, disabled triumph over what had happened to me during the hardest point of Melbourne’s Stage 4 lockdown.

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I’D EXPERIENCED psychosis a handful of times since coming to Australia. I’d always been able to recognise the increased anxiety, the crawling under my skin and the unformed shapes in my peripheral vision as warning signs of what was to come.

More often than not, I had been able to let my (amazing!) psychiatrist know, and together we’d always managed to manoeuvre me out of the worst of it.

Not this time, though.

I shook my partner awake in a panic, and told them I thought I had psychosis.

In our fear, we made the decision to catch a taxi to the nearest emergency department. I was barely lucid, so my partner navigated the majority of the pre-triage bureaucracy on my behalf, before they were sent back out – new Covid-19 precautions.

I was back in hospital with psychosis, for the second time in my life, and I was terrified. No partner. And no kindly paramedic this time, either – I was completely alone.

Ten hours of petrifying, excruciating unreality followed, broken up only by an offer of benzodiazepine, which did nothing other than escalate my already derailing belief in the safety of my surroundings.

The mental health nurse arrived to evaluate me in the morning. I was released back into the cold, with no medication, no help, no direction as to what to do next.

If my partner hadn’t waited for me at the entrance to the hospital, I would have been released into the world, my psychosis in full swing, with nobody to check in on how – no, if – I was going to make it back home safely.

The hospital should have been the best place I could have gone to in my situation. Instead, it compounded my crisis.

As a Black, queer, disabled person, my experience with medical institutions has been one of relentless neglect to the point of ongoing harm. It has permeated my life to the point that I’ve made the decision not to pursue any gender-affirming procedures. I’m too disabled to assume I won’t need medical help more frequently than most, so I have decided to mitigate the ways in which I could be dismissed or harmed in a medical setting.

I know there are a multitude of healthcare workers all over Australia and the world who have sacrificed so much and who are working so hard in such fraught conditions. The relentlessness of this pandemic has truly exposed so much of the systemic neglect that so many global healthcare systems have been subjected to.

I’ve written here about some of my worst experiences with healthcare professionals, but I have also had people look after me who were truly invested in my health outcomes, and I know there are many people like this in the various healthcare professions. However, my negative experiences didn’t, and don’t, just happen to me, and they don’t just happen in a vacuum.

AT THE HEIGHT of the global Black Lives Matter protests in 2020, policing as an institution came under a microscope again. In a somewhat misguided attempt to express allyship, many people, including medical professionals, began to point out the dire repercussions they would face for making fatal mistakes on the job. I didn’t know how to process that.

On an institutional level, the medical system fails, and sometimes outright harms, the same demographics that are at increased risk of police brutality.

Aboriginal and Torres Strait Islander people – the most incarcerated people in the world – trend higher on rates of disability and chronic illness, and poorer on health outcomes, than non-Indigenous people.

On an individual level, healthcare workers aren’t automatically absolved of internalised oppressive and prejudicial beliefs by virtue of operating in health professions.

Many watched in horror as the media spread the videos Dr Susan Moore, a Black doctor, recorded while undergoing treatment for Covid-19 at an Indiana Hospital. In the video, she recounts having her symptoms invalidated, being told she didn’t qualify for further treatments, being told to go home, and being told by her doctor that they didn’t feel “comfortable” giving her narcotics.

When those things happened to me, I used to call them medical microaggressions. I was fortunate that my health wasn’t immediately at risk.

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Dr Moore later passed away from Covid-19 complications.

I don’t call them microaggressions anymore. It’s medical racism.

PANDEMIC POLICY and discourse has rendered me simultaneously invisible and hyper-visible. At the start of the pandemic, institutions, governments and society at large welcomed the idea that Covid-19 was ‘only’ dangerous for those with “underlying medical conditions”, and the elderly.

What was supposed to sound like an assurance felt like a clear declaration that some of us are acceptable losses.

Watching pressers and consuming media around Covid-19 casualties feels like watching a macabre exercise in national self-soothing – “underlying medical conditions” is the proverbial spoonful of sugar. That couldn’t happen to you, they had Underlying Medical Conditions. It’s also victim-blaming: systemic failures laid at the feet of the individual. Note how ‘underlying medical conditions’ does similar heavy lifting with regards to Indigenous deaths in custody.

The idea that there are so few of us with underlying medical conditions is a farcical one. Most people don’t know they have an underlying medical condition until something happens; something like fainting yet again while in the process of writing an article, undergoing a lot of testing, and finding out about a heart problem.

Life is disabling. Living under capitalism is disabling. Being marginalised exacerbates that. Framing those of us who are high-risk as a tiny minority is cognitive gymnastics.

I was eligible to be vaccinated very early in the rollout, but I only managed to get a booking in late August 2021. I checked online every day, four times a

day, panicking slightly at every failed attempt to find the means to protect myself and those around me. I was – thankfully – fully vaccinated by the end of September 2021.

For all the emphasis on making sure that high-risk groups were vaccinated as soon as possible, it felt like the entire process was entirely inaccessible.

It should never have taken me months to access a vaccine – how much more difficult is access for those living in remote communities? What about incarcerated people?

Vaccine access is a privilege that hasn’t been afforded to the myriad overlooked, and higher instances of disability is a connecting thread. We are witnessing the cold calculus of who matters.

The recurring themes of medical harm in my life mean vaccine hesitancy has never factored for me. Life has taught me it is essential that I mitigate my risk of hospitalisation for Covid-19.

If things do escalate, if I end up being triaged in an emergency department, would my Black, queer, chronically ill, disabled body demonstrate ‘recovery potential’?

Would I be worthy of treatment?

Familiarity with sites of healing as arenas of trauma through collective warnings and personal experience isn’t exceptional. The outright abandonment of vulnerable populations and the scapegoating of disability isn’t extraordinary. This pandemic has merely exaggerated our normal.

Normal isn’t aspirational. Normal is an abyss we need to ascend.

TUESDAY ATZINGER is an emerging writer and poet living, working and studying on Wurundjeri land. Their work centres around issues of class, anti-Blackness, feminism, queerness and disability. When they aren’t waxing lyrical about their cane (Adjustable! Sleek! Black!

Fritz handle!) they can be found online, using Twitter badly.

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MOTHER

Words: EMILY DASH Images: LISA SORGINI

INSTINCT

As a person requiring full-time care, yearning to become a parent can be terrifying.

AS A DISABLED PERSON, I have always lived outside the lines. My physical body, my womanhood, my fluid sexuality and my entire identity are not easily defined in the way that society thinks they should be. I’m fairly comfortable with that.

But even within my community, sometimes I feel like I don’t quite fit, and my support needs complicate things. I require full-time support with every aspect of daily living, and I can’t pretend otherwise. Every day, I must come to grips with my limitations – so I am often neither ashamed nor proud to be disabled.

I’m used to the fight. Not only against the tyranny of other people’s low expectations and the limits they place on me, but to define myself. To be independent and live the life I want to on my own terms, to have control over my destiny. But the fight of my life is still to come.

There is a deep, burning urge within me that I know can never be satisfied by anything else: I yearn to be a mother. And it terrifies me.

My mother had this yearning, too; she says it’s because we’re the youngest in our families.

I say it’s because my life and my family are so great that I want to share them with the next generation. But I’m single and disabled, and there’s no doubt that having a child will be especially tricky for me.

Even now, I hear your objections ring out loud and clear: disabled people can be parents!

Of course we can, with the support we need. I know many great parents who are disabled. All of them require less physical support than I do.

So if I were to be a single parent by choice, what would that look like? I just don’t know.

SOCIETY EXPECTS MOTHERS to be physically nurturing, which would be difficult for me. Can I put that responsibility onto my ageing parents or my support workers?

My child would surely grow up loved by a village and with a greater understanding of diversity. I can’t help wondering whether that makes up for all the ways I could not be more hands-on, and if it’s selfish of me, or whether they would lose anything.

Speaking of selfishness, there’s a nagging thought in the back of my mind. I am an anxious and not particularly flexible creature. The nature of my disability means that I have to plan everything out in advance, and variations to routine stress me out. I know enough about parenting to know it’s not exactly predictable.

In my experience, having high-care needs can fast track your emotional growth and maturity in some ways, while stunting it in others. For example, I learned very early on how to be comfortable with my body – there is not much room for shame when you have to get naked in front of other people every day.

But this same curious relationship to privacy means I don’t have the boundaries that most other people do – I struggle with oversharing, often give too much too quickly, and get hurt when it is not reciprocated.

I also get very defensive instead of letting things go, because to me letting go feels remarkably like letting people get away with things. Fighting for everything you have, and simply to be seen and heard, can make you acutely aware of your needs.

I suppose being thirty years old and living at home with my parents doesn’t help with any of this. When I’m not working, I’m very attached to my TV time. By its very nature, parenthood requires some degree of sacrifice – in time, energy and so on. When the time comes, I have to be prepared and emotionally equipped for that.

Still, I think an essential part of being human is the capacity to give and be of service to another person. Living with disability, my capacity to give and make a meaningful contribution is questioned all too often. And while I would never have a child just to fulfil my own needs, I know I can be a ‘good’ mother (not in spite of my complexities, but because of them) – I will not stand for anything else.

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WHERE DOES THAT leave me?

I’m a big believer in accepting your situation, processing your feelings around it and making the best of things. I feel some grief – about the life I thought I’d have and my disappointment that my journey won’t be easier.

There’s no easy answer, and I certainly haven’t figured all this out yet. Maybe I will, maybe I won’t.

In the meantime, my attention turns to the other children around me: for now, my godchildren. Lockdown has meant that I don’t see them, but watching the wonderful people they are growing into (with the help of their amazing parents) brings me so much joy. I see their mother, my best friend of over a decade, communicating with her young kids without talking down to them. I see her respecting their autonomy and independence while guiding them and giving them the tools they need to thrive. It won’t be easy, but I can do that.

Without a doubt, the day my siblings and their partners (who are all my favourite people on the planet) announce that they’re expecting a baby will be the greatest day of my life. I think it will radically shift my priorities, and give me a new-found sense of purpose.

And, pretty soon after that, I’m sure all of my old questions and insecurities will come rushing in. What kind of aunty do I want to be? How can I be most helpful? What if I can’t do all the things I want to?

LUCKILY, I KNOW that I can give a child the things that matter. I want our new addition to the family to know that I love and accept them unconditionally – whoever they are and whatever life brings.

I’m very different from the rest of my family in some ways, because of my beliefs and my life experiences, but that’s okay. I think I’ll be the slightly alternative aunty who shows a child that it’s okay to be different, to keep an open mind and to see there are at least two sides to every story.

As someone who has often felt socially isolated or excluded and has felt the sting of loneliness intimately, I want them to know that you should never have to fight to be loved.

Whether a friend or a partner, if someone continually makes you feel as though you need to drastically change or apologise for who you are just to keep them around, they are not for you. They are not your people. People will come and go – you have no control over that, and that’s okay. The people who matter will be the ones who stay, and there will be nothing you can do to scare them away.

It took me thirty years to truly learn this, and I hope it won’t take them that long. But I will be there to pick up the pieces if it does.

I had to learn how to not let fear win and steal everything. I want them to know life is one big experiment. It’s so much better when you grab it with both hands, get out there to play, tell stories and make a mess (finger-painting, anyone?), fall, then get right back up again.

Maybe they will look at me eating, opening a present or creating something new, and see it doesn’t matter if you do things a little differently, or if it takes more time or baby steps. It’s just important that you are brave and try for yourself. Everything is possible.

And one day, perhaps I’ll pass these lessons on to my own kids. I’ll experience something that I can only imagine is akin to skydiving out of a plane, losing control as you freefall through the air and hoping against hope you brought the right parachute – the beautiful, terrifying, anxiety-ridden magic of raising children.

I’m sure I can learn a few things along the way.

EMILY DASH is an emerging writer, actor, producer and speaker. She has a wide range of credits across theatre and screen.

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Words: GISELLE* Images: LAIA ABRIL

A

quiet

Most people with disabilities aren’t asexual – but some are.

sexuality

*Name changed because the writer wishes to remain anonymous.

YEARS AGO, DAD was driving me home from uni when a story came on the radio about asexuality. I remember the announcer laughing, ridiculing the subject: “There are some people who really don’t like sex.”

I found some websites and encountered many terms, including “spectrum of attraction” and “sex repulsed”. I related to much of what I read but soon had to stop looking. I had a disability. I didn’t want to also be asexual. That was an insult, an unwanted label.

I would find a boyfriend. Of course I would. Sure, it might take a bit longer than it would for my friends – lots of things did. But I could do anything I really wanted to; I always did. And I really wanted a boyfriend.

I now know how heteronormative I was, and how none of that thinking had to do with sex. It had a bit to do with romance, but it was mostly about closeness. I assumed that was how it was for everyone, that thoughts of sex followed eventually. I didn’t think much about sex – but I would, when I met the right person.

IT TOOK A WHILE to realise what was different about me. My friends, mostly non-disabled people, were largely traditional. By choice or because of internalised shame, there was barely any talk of sex. When there was, it was connected to a specific partner – a declaration of love.

It had confused me when my female friends scoured the male population, on a mission. They were searching for a “potential boyfriend”, and seemed to have no interest in seeing the guys as friends.

I had joined ‘single-sex’ schooling late and gender had never been a barrier for me developing close one-on-one friendships. This started with my earliest close friend, whom I always thought of as a person rather than a boy. At times, I’d wished he was a girl, but only so I could fit the mould and have one less point of difference from my classmates. Within our relationship, gender hadn’t seemed to matter, and neither had my disability.

More male friends had followed – enough to make me think that one day, one of these relationships would turn into “something more”, as books labelled it.

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I slowly realised that, for many others, there was an underlying physical desire that existed independent of a connection, or even a specific person. When the realisation dawned, it was like I had been punched – what’s wrong with me? I read that sexual awakening was the final stage of adult development, and that my friends may have started having early feelings at three or four. I wondered: Would I be a child forever?

I COULDN’T IMAGINE how sex would work in my super-tight body, but others with disabilities seemed to make it work. I read about people with disabilities seeking funding for sex work.

I would feel disappointed – and then guilty about my disappointment – every time a woman featured, which suggested it wasn’t just men who wanted sexual supports. When I read about a woman whose only social outing was to see a sex worker, I thought: Wow, is this the most important thing in my friends’ lives?

As I began to mix in disability circles, I noticed the emphasis on normalising sex work. Sex workers were positioned as filling a human rights role. Advocates suggested anyone would use a sex worker if there was no other way to fulfil this fundamental need. I searched inside myself, looking for this need.

A GREAT ADVOCATE I looked up to posted that she was writing an article on female disabled sexuality and asked for public comments. I sent her a private message, asking if anyone else had told her that sex was no big deal for them. Her reply came quickly: this was my internalised ableism and would I consider seeing a psychologist?

Not about this, I thought. But was she right? Was I letting myself down?

I posted advocacy messages on Facebook telling my circle that there was no shame in using a sex worker. I was uncomfortable with the idea that people might think I used one, but I had to do it. I was taking one for the team, showing them that people with disabilities are not asexual by default.

MY BOSS, A GAY MAN, made sex jokes a lot.

I could tell it made most of the team a little uncomfortable, but he was the boss and we didn’t want to be discriminatory.

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“Responses I get when I tell people I’m asexual are mixed. Some people – mainly men – say they can’t imagine it, or imply it is related to disability. I always feel the need to add, ‘Most people with disabilities are not asexual’” 136

He said he was being sex positive. I wondered, Does the term sex positive mean everything is about sex?

One day, I asked him what sex positive meant.

He said it meant that every person on the planet had a different sexuality.

I saw a chance, an opening. “Does that mean,” I asked, “that some people’s sexuality is a bit more… quiet?”

He asked me to remind him to tell me about a “run-in” he once had with an asexual group.

When I returned to my desk, I saw he’d emailed me the link to the Wikipedia page on sex positivity.

He stopped making sex jokes when talking to me one-on-one. A strange, inadvertent coming out.

THAT WAS A turning point for me. I began to understand that sexuality was fluid, and that each person around me experienced sexuality differently.

I began to tell some people, slowly, in an understated way, “You know, I’m not really that interested in sex.”

It often came up when they were discussing their coming out as queer. Once, it happened when my female disabled friend spoke excitedly about a visit to a sex worker. I wanted people to know how much I cared about their experiences, but that I had nothing to compare them to.

When my friend earnestly replied that her experience with the sex worker “wasn’t love”, it made me see that many people are, like me, caught up in the dream and hope of what sex is. The act is made to signify so much.

RESPONSES I GET when I tell people I’m asexual are mixed.

Some people – mainly men – say they can’t imagine it, or imply it is related to disability. I always feel the need to add, “Most people with disabilities are not asexual.”

Others say, “Oh, many women only want emotional connection,” and I wonder if I have found an unknowing fellow asexual.

But luckily, they mostly just say, “Okay,” and I am reassured that they still think I’m a fully developed adult.

We then continue with what we were talking about, and I feel less pressure to keep up with the innuendo. Sometimes

it will stop it happening next time; sometimes it won’t.

AM I OKAY with how I am? It’s a work in progress.

If I felt sexual desire shoot through me like lightning one day, I would probably be very excited. And then I would wonder how on earth I was going to fulfil it.

I long for the closeness that seems to come with sex. It’s the fast lane to intimacy, to being someone’s number one.

I love to give and receive hugs from people I care about, and find it puzzling that people can like sex but not hugs.

I have a really strong hug drive, and wonder why it is so much less accepted to speak about this.

I embrace platonic love, irrespective of gender. I hate that cross-gender friendship is still the subject of debate.

I take comfort in people beginning to understand that cross-gender friendships are important in their lives.

But there’s still a way to go. During the fight for marriage equality in Australia, I went to a calling party organised by a queer friend. I found myself reiterating to strangers how “everyone deserves to marry the person they love”.

The hierarchy of love is strong.

I feel I’m more open-minded of friends’ sexuality since I have actively stopped trying to position myself in relation to it. Everything seems strange to me, so nothing is strange.

I may never be out in the disability community, as solidarity with others’ struggles is too strong.

Maybe one day, when other rights are won, it won’t be necessary to point out that most people with disabilities are not asexual. Maybe then we will truly acknowledge that every person has a different sexuality.

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The side effects of a diagnosis can be unexpected – on sexual connection and sense of self.

A bipolar disorder diagnosis and a marriage

Words: KJ Images: AURORE JUIN

“BIPOLAR DISORDER,” my psychiatrist announced as if he was ordering an egg and lettuce focaccia at the hospital cafeteria.

I really couldn’t comprehend the phrase. ‘Bipolar disorder’ – he decided to refer to it as BP from then on, which was confusing as that’s a service station – didn’t sit comfortably in my frontal cortex. It was probably a good thing that I was sitting down in the hospital consulting room, even if the chair was upholstered in fabric that itched.

I suddenly realised why the river of mania, anxiety, negativity, depression and suicidal thoughts existed. My brain was trying to kill me. And the shaking.

Not my whole body; individual parts like fingers, knees and elbows. That worried me: the elbows bit. Whose elbows shake?

My wife, holding my shaking fingers, was blinking as well, but slowly nodding.

It had to be because of the news, the epiphany. I hadn’t got there yet – I was an explanation cloaked in shaking bones and shallow breathing.

She now had the answer for why it wasn’t just mood swings. We’d always thought it was more than that. ‘Mood swings’ was too meagre a term to fit my substantial emotional seesaw.

We realised that my highs and lows, and the rolling wave that drowns but doesn’t, was more than a quick jaunt to the emotional playground. My merry-go-round, which was rotating independently and much too quickly, slung me away like a giant centrifuged emotional glob, launching me into the sky through the ozone layer of mania only to return, violently, to earth.

Bipolar. Who knew?

My wife knew. And I’d suddenly switched on the light above my head.

The psychiatrist wasn’t finished, happily flaunting the alphabet of qualifications that underlined his name.

He informed us that bipolar disorder is a lifelong illness and that currently there is no cure. His words tumbled to the floor, drifted into the corners and crept up the walls.

We breathed. He informed us that the illness could be well-managed with medication.

Before our smiles could curve, he pointed to the ceiling as if struck by a sudden inspiration. Apparently, the medication would need tweaking and

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poking and testing. Some bipolar-havers would not get their medication exact for up to five years.

That’s when my brain, my heart, my life strata took a step back, like the meme of Homer Simpson disappearing into the hedge.

MY WIFE REACHED forward to envelop, to cherish. Both were the actions of one who loves and adores another. Instead of mirroring her – saying, “Look. I have this diagnosis now. Let’s use it and work together” – I withdrew, clutching onto the diagnosis like a metaphorical certificate of merit and hanging it on my wall inside my blanket fort.

For the next four years, I pointed to it, my eyes wide, brows raised – hello, Captain Obvious – when a question, buoyant with hope, could be rebuffed by an imaginary A4 document. I needed it to justify the behaviour that was to follow Diagnosis Day. My wife asked questions; I supplied answers and nodded seriously, as that seemed appropriate. It camouflaged the tightness in my chest.

I was so scared – bipolar was the clown in the drain – and it was so, so simple to retreat. I resigned from work.

I resigned from our relationship. I resigned from our son. I resigned from responsibility. Instead of saying “I’ve got a diagnosis, folks. Look after me. I can’t do it by myself,” I silenced that instinct, choosing to dramatise the idea as a series of actions. It was significantly less painful.

I felt comfortable in my blanket fort.

It was my childhood – the childhood I’d wanted, actually, but that’s a whole therapy session all by itself. My fort was warm and small, and I could peek out and someone would look after me, except that someone was my wife.

IT CAME AS NO surprise to anyone that the sexual connection between my wife and I went from an inflated balloon to the flaccid remnants of a party hanging from the ceiling.

Who could desire a woman who’d retreated into a brain cave to rock backwards and forwards?

I knew that my wife loved me – fiercely, endlessly – but she no longer desired me.

The self-recrimination was allconsuming. We’d valued a sexual connection in our marriage, and I had taken an enormous pair of scissors to it, severing any chance of repairing it, no matter how much duct tape I used.

Who would want to be intimate with a person who had no sense of agency and refused to give consent? I didn’t blame her.

We’d lie in bed, holding hands across what felt like a chasm. We’d drift off to sleep, lying beside unattainable, unspoken words.

BIPOLAR DISORDER comes with a backpack of symptoms during mania – commonly known as a high.

Hypomania, the junior sibling with short bursts of episodic mania, has symptoms that are generally less severe but still not overly fun. These can include poor decision-making, an obnoxious attitude, rapid speech, sometimes unlawful acts, a lack of sleep and racing thoughts that make you feel as if your brain is only inside your head through sheer willpower. Unmedicated, some bipolar-havers develop a drive to engage in spontaneous sex, experiencing bold desire and desperate need.

A high, with that poorly thought out, sleep-deprived, obnoxious, breathtaking need for sex, is exciting but dangerous.

It is electrifying but alarming. It is akin to riding a wave that starts as a perfect swell, then builds, and the wind whips through your hair so that you’re starring in your own advertisement, then the wave forms more of its shape under your board and you’ve grown five extra arms and you’re emailing and painting and writing that novel and finishing that course and looking through Pinterest to find your next project and it’s all so much but you can do it because you’re invincible with a superpower and you’re obnoxious and talking so quickly that you start your next sentence before you’ve even finished your last one and you’re in charge and the boss and you fundamentally believe that you can fly off that apartment block because you’ve disconnected from reality but go on do it you know you can and… then suddenly the wave disappears.

There’s a moment – a moment of good badness, bad goodness – when you hover in the air. Then your board

drops, you plummet to the earth, and you lay broken on the beach for days and months and minutes, not really remembering the wave or what happened, but knowing it was bad.

Sand is uncomfortable, itchy, but you can’t move away from the body-shaped indentation. Not for a while. Your body is flat, but not. Broken, but not. You do move, eventually, because there’s a wave coming and you’re not sure what happened on the previous wave but you didn’t like it. Not really. But the ride itself? Oh, that was awesome. Wasn’t it?

You can’t remember.

MEDICATION GIVES a bipolar-haver the chance to experience long periods of even, balanced moods called euthymia. It’s a lovely, entirely normal place for a bipolar-haver.

Euthymia is the properly pumped-up lilo that doesn’t sag in the middle so your swimmers get soggy. It is floating in the pool that is absent of other humans so the surface is glass. Euthymia is closing your eyes because you trust that a seven-year-old child will not use you as a springboard to access the deep end. I’ve feasted on that feeling after selecting my lilo and the shape of my pool; tasted the calm, but not; tasted the reprieve, but not. Euthymia is the funfair attraction with the warped mirrors, and wondering: What is real?

I became convinced that my wife couldn’t hunger for a person with euthymia. The vines of doubt and deceit began to twist and murmur. I wanted that mania to return. Oh God, I wanted it, because when I was manic and unmedicated, our sexual connection was substantial. It had depth and want.

Sitting in a blanket fort allowed for great big handfuls of time for my brain to suggest that the only reason we’d had a strong connection in the bedroom – and other places – was because of a manic wave.

It had to be my fault that we’d lost the connection, because the medication had reduced the highs.

Therefore, I should abandon my medication so we could connect again. As equals. But if I stopped my medication, then my brain would go back to how it was before the diagnosis – thrilled to restart its contract to kill me.

I was a Quentin Tarantino film.

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1141 41

I DIDN’T STOP my medication.

It was because of my wife. Even though she didn’t like the person I was when I was high, high, high, she had always told me, over and over and more and more, that she loved me. Adored me. That she would always be there, loving and adoring me, forever and ever and more.

So we’d hold each other in our bed, not having sex, and we’d breathe the air past each other’s ears and I’d tuck my forehead into that vulnerable-butnot place where foreheads fit between collarbones and necks.

We continued to lie on the unspoken words that pricked and jabbed on the mattress, but we loved. Even though I was a child whose wife had become an involuntary parent.

Even in my most contemptible moments – my label, my burden – when I was in my mind, visiting that playground of swings and other metal-encased apparatus, my wife was there, crawling through the flap of the blanket fort with the same words, always the same words: “You know you can come out. You can do it. You’ll be fine. You’ll be amazing. I love you. And we’ll get back to being us again. I do crave for you. But not yet.”

I listened, and stayed where I was. I firmly believed that every time I asked, every time I shared a want, or expressed a need, smiled my desire, and my wife said “No,” surely it was my fault. Clearly, I was not desirable, even as an adult.

My wife would step back and encourage me to come to her. I understood, but it didn’t stop me crawling back into my blanket fort to despair at the concept that I could no longer arouse my wife. I had caused this situation.

The self-recrimination drew better circles than a drafting compass, until one day it stopped.

smiled and then took a step back, which halted my movement, my thoughts, my new-found freedom.

I knew what she was doing. I wasn’t her equal yet. I’d emerged, clutching my certificate, and assumed that leaping into bed was the next logical step. Of course it wasn’t. I took another step forward. I parented our child. I made eye contact. I placed emphasis on small touches and small gestures, which were big and important.

My wife took another step back.

I touched. I admired. Words tumbled from my mouth that expressed my love for our son, for my wife, and particularly for me. The words of love for myself applied the brakes to my wife’s movement. She stopped. Then smiled.

“Welcome back.”

The embrace was not one of comfort, although it was. It was not one of companionship, although it was. It was not one of friendship, although it was.

It was all and everything. It was a crowded embrace carrying potential possibilities and tentative desire.

We rediscovered our touch, reconstructed our shape, and re-established our desire. Tentatively. Carefully. It was important because we’d spent so much time holding hands over the prickles of unspoken words that were now bending and diminishing the more the talk grew, spreading across our heated skin and into our hearts.

It was the talk of two people who wanted each other because we were equal and whole.

IN THE FOURTH year of my chosen childhood, my breath caught in my throat.

The epiphany that my wife had experienced on Diagnosis Day finally smacked me in the face. I could make a difference. I could claim autonomy.

I could be the adult who expressed sensuality in a way that encouraged my wife and gave me permission to own my desirability. And I could go to her.

I tentatively emerged from my blanket fort, and my wife smiled. She

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KJ, the author of lesbian romantic thriller Igni and romantic comedy Coming Home, writes stories because her imagination takes the wheel. Permanently anxious and overly fond of cats, KJ is married and a mum, and has been told that she’s funny.

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Words: MURRAY TURNER-JONES Images: SASHA ST.

RECOVERY THROUGH SUBMISSION

Kink can serve as emotional and physical pain management.

A COMMON misconception about the kink community is that people engage in the culture of BDSM solely because they are traumatised or damaged. This is definitely not the case – but there are nuances. For people like me, the play is both a lot of fun and a healing path out of trauma.

I am a middle-aged disabled person who experiences an array of painful physical symptoms. For as long as I can remember I’ve had an interest in kink, which I never had the confidence to bring up. I would nudge my lovers in that direction, but never directly, never clearly. Sometimes it worked out, sometimes it didn’t, and I grew more frustrated the older I got. I felt shame for wanting what I wanted, and feared rejection or ridicule if I uttered any words around the topic out loud.

The first therapist I mentioned my yearnings to told me in no uncertain terms that I could either pursue kink or be a “normal person who could continue having normal relationships”.

I clammed up for another year.

I could not escape from constant reminders of my yearning.

I’d wander into a shopping centre only to hear ‘Total Control’ by The Motels, and think, You have got to be kidding me. Online forms implored me to “submit”; pizzas had toppings; documents I read for work mentioned a “chain of command”.

Don’t even get me started on my internet browser’s search history; there are all sorts of corners online to find out what you need to know and I’d had a look at most of them.

I was generally overwhelmed and had no idea where or how to start. It all seemed so frightening and unsafe.

I did what I do best in difficult times and carried out some research.

I went to see a sex therapist. I spoke to a sexologist, who directed me to an occupational therapist who specialises in sexuality, kink and disability. Each of them reassured me that I was quite normal, actually, and it was no biggie.

Once I’d learned what I could from the occupational therapist about the mechanics of it all and how I could explore safely with my body and its special features, they referred me to a new counsellor with expertise in my interests.

This counsellor and I have a shared understanding of the lived experience of fatigue, pain and complex gender identity. We could talk easily about ego, abuse, capitalism – all of the things that can be barriers to trust when you’re face to face with someone in a vulnerable situation. After some deeper work, I cheerfully announced to them that I was ready to see a professional to scratch this itch.

I booked in with a phenomenal woman who had been recommended to me. She worked out of a private dungeon and was comfortable helping me explore within the physical limitations I have.

After more than a month, and over 46 emails, the day arrived. I walked in trembling and green in the face, and left triumphant and affirmed a few hours later. Yes, it’s definitely something I’m into. I knew it in every fibre of my being.

The relief was incredible – I had finally taken the leap and the physical and emotional rewards were beyond what I imagined. That night, I slept the sleep of the satiated.

TO UNDERSTAND what happened next, you’ll need a bit more background that I avoid thinking about, let alone writing down.

I have unfortunately experienced abuse at the hands of boys and men, and for my whole life I have felt intense fear and hypervigilance, which whirred away around the clock to keep me safe (this didn’t work, it just made me sick).

I had read about Sir James, a cis male sex worker who advertised himself as a “professional man-handler”.

In order to do my due diligence, I needed to hear the tone of his voice.

Luckily for me, he had been interviewed on a podcast by someone who had seen him in a professional context. In those 40 minutes I learned everything I needed to know to have the confidence to go ahead.

He cared about his clients – that much was plain – and there was no element of menace or disrespect, only curiosity and an intrinsic need to see and understand the core of people and act accordingly.

What came across was gentleness and an open mind.

Why was I seeking a professional man-handler? Why a man at all?

I had reached a point where I was so

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weary of all my fear. When I pondered the fear and its place in my life, I realised that it was toxic, and that it was interrupting my life every single day. I needed to look this history of violence and fear in the eye and jump in, because it couldn’t possibly be worse than what was already happening in my brain.

WHAT I HAVE learned about kink, and my interest in experiencing the submissive side, is that I am the person in charge of what is happening, no matter what.

It began as a curiosity – to explore gender and masculinity at close range, and frankly to have some really hot sex – and became an experience that altered the pathways in my brain, melting the trauma markers and building strong foundations of security and safety.

The pre-session negotiation was detailed – it really made me think about what I wanted, what I needed and what was safe for me. There were particular things that were important for me to include because in some ways they were the very things that had caused the most damage. If these happened because I was making that choice, paying my hard-earned money, and taking the time, physical energy and headspace to request these acts specifically, everything could potentially change.

On the other hand, aspects like a raised voice with even a hint of aggression were off limits, and I was very clear in saying so.

It boiled down to valuing my agency and my choices. The act of subverting the narrative of male dominance and strength short-circuited the fear carried in my body. In this interaction, where I was essentially the director, I could use that subversion to my advantage.

Waiting in the room just inside the door of the venue, I was happy and nervous, but not worried. I had been in this situation before and hoped the experience would be similarly transformative.

In the few minutes that felt like hours, I scanned the walls, taking in the images of people who worked there, and cast my eyes over the rules. The space had an air of happy anticipation, which I felt in my bones.

THE DOOR opened. A person I can only describe as a bear-like man mountain came into the waiting room and loomed over me, eyes sparkling. We said hello and he asked how I was.

“Nervous, and good,” I replied.

He looked me deep in the eyes and said nervous is very good.

Gulp. I felt myself shrink into the bench seat as I registered his predatory stance. Why do I like this?

We went over the particulars of the email I’d sent him – the most depraved and filthy email I’ve ever sent to another human being, in which I listed what I was after – and he asked for medical information about any areas he had to be careful with due to my disability, so he could do his job well and make sure everyone was a winner.

“Just my whole body,” I quipped.

“Cool – so pretty simple to navigate.”

His reply came with a smile.

I was warmed to my core by the ease between us established so swiftly. He led me down the hallway to the dungeon I’d spied on the website, after checking there wasn’t anyone else in the space.

“That’s a lot of mirrors,” I said, regarding the full wall of reflection. He dimmed the lights and said I would barely notice them after two minutes.

I put my jacket and keys in the box he gestured to, which was on the floor.

I don’t know exactly what happened next because it’s all a blur, but I was pinned to the back of the door, my hair was laced through his fingers and he was looking intently at my face as he used his other hand to unbutton and remove my outer layers piece by piece.

He smelled so good – all pheromones and friendliness. Then my legs stopped working and he got the giggles.

What? How was this giant wrestler

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who was all muscle, powerlifting and strength giggling?

It turned out I would join him in mirth-filled explosions or yelling the house down for most of the three hours we spent together.

EARLY IN the piece, his hands glided over my ribs and everything in me felt jagged and unsafe.

He stopped, removed his hands and asked me what was happening. I was a bit lost for words and told him it felt bad and I didn’t like it.

The negotiation took 30 seconds but after we spoke, he demonstrated that he had heard me.

He observed that I was uncomfortable and checked in, and what he moved on to – the way his hands were in contact with my torso – was completely different and felt safe.

I let go, completely. He had won my trust. In a world where many people feel that they have the power to decide how to treat other people’s bodies, this act and the dance we were in together was monumental.

We talked about work, and friends, and he brought the suede switch down artfully on my shoulder blades. It was incredibly loud, and felt like sparkling fireworks instead of pain, and we laughed and swapped pandemic stories.

He asked me questions that required deep thinking to answer, and then rendered me incapable of thought or speech. He messed with my head – and I loved it. It was playful and there wasn’t a drop of cruelty. It was fun.

There was something about the raw vulnerability of the situation that made the intention of this work stick. I was actively trying to change my viewpoint of the world and where I placed myself in it – I’d had so much talk therapy around this, and I was ready at last to absorb the messaging every meditation, hypnosis and therapeutic discussion revolves around: I am safe.

At times, we paused our activities and I went to a place beyond seeing, to a state of trust and acceptance. Sir James wrapped me up in a big bear hug.

I felt like a roaring engine coming to a pause, the revs clicking down down down as my breathing slowed and deepened. He stroked my back and we both exhaled and there was a humming in my brain where the bridge was forming between a terrible past and a hopeful future. Stillness had never been comfortable, but I could have perched here forever. I was breath and stars and there was nothing to protect myself from, not anymore.

Then we revved up again and I laughed at what I found myself enjoying; if these options had been on a menu I can’t imagine I would have requested them. Being cornered became both erotic and humorous because it was possible to stop it – with one word, glance or gesture. It was a game that I knew I would always win. It wasn’t going to be dangerous, ever, because this person was a professional who was keeping an extremely close eye on me. Sir James was trained to read body language and mood, and, more importantly, to stop and ask for consent if, at any point, clarity left the building.

Once, as I looked up at him chuckling down at me, I asked in a smaller voice than I realised would come out of my mouth, “Are you laughing at me?”

His response was like a loving waterfall. “Oh no, I’m laughing because you’re so fun to play with – all of your buttons are so excellent to push and I’m happy to see you happy and free.”

I jumped into the arms of the most masculine manly man I could find

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and let him do what he – or rather I – wanted, and the experience was not only transformative, but extremely jovial and generously held.

I keenly observed how he expressed his maleness, and felt like I’d had the healthiest lesson of my life on how to inhabit machismo – with warmth, strength, kindness and, most importantly, openness and a view of keeping the space safe.

As our time together came to an end, he told me a lot of people sought him out for a safe masculine experience to right wrongs and heal damage.

I was high as a kite on endorphins and truly believed there ought to be some sort of shrine and a really tender and tasteful documentary made about him, as well as government-funded emotional and physical pain management sessions with him. What a world this could be!

SOMETHING HAPPENED to me in the following days.

Often after a submissive experience in BDSM, there can be what’s known as a drop, where you can feel quite down, teary, exhausted or all of the above, but for me it was the opposite.

I’d left that building with a parting blow of a mighty slap on my arse, and gotten in my car where I consumed an entire bag of jellybeans by the fistful – glucose was required immediately to function. I looked at my reflection in the rear-view mirror and saw a flushed, glowing face that seemed relaxed in a way I had never seen before.

I started the car once my brain was working enough to drive it, and parked in a dark street 10 minutes away. I realised, as I walked through the lanes and streets, that I was walking differently.

Noticing people walking behind me didn’t result in brittle movements. There was no sense of extra tension held in my frame, just in case. I felt immense, powerful and safe until proven otherwise. I was aware but nowhere near afraid.

When I met with my counsellor a few days later I let them know what I’d been up to. They seamlessly recognised the greater possibility in a therapeutic sense. We built on the high I was riding and, as had happened so many times, I let them guide me into a state where I embodied my anger and spoke from its perspective.

“Pain for a purpose is a different animal from the pain that inhabits my body as part of my disability” Anger had never been a safe place to think, speak or be. It only caused more problems. But, this time, in my anger, I spoke directly to the men who had damaged me and destroyed my sense of safety, and I told them that I had no intention of forgiving them or associating with them. Were they to approach me, I would hold a firm boundary that would be impenetrable because I was sure of myself and there was no question of my part in things.

I knew, at last, that none of it had been my fault. Regardless of their own trauma and the need to pass it forward by way of exorcising their own pain, they should have done better. I knew that I would do a better job of being a man than they ever would. My voice and my rage were calm, clear and steady.

The physical implications have been nothing short of phenomenal. Where usually I’m in widespread pain and constant exhaustion, the act of dropping my hypervigilance has increased my energy levels to a point where basic functioning is much easier, and I’m able to participate more in life instead of

needing constant rest. When I rest, it is more restorative because I truly let go when I sleep. There’s no faceless figure to guard myself against 24/7.

My pain levels reduced for a full week after my booking, and I’m looking forward to going again to enjoy the highs and physical benefits.

Pain for a purpose is a different animal from the pain that inhabits my body as part of my disability. It is soothing, refreshing and energising. Everything is changed, I am changed. I have never felt so clear and still, and I know that so much is possible now I’ve left my fears, and my abusers, behind.

MURRAY TURNER-JONES is an IT consultant and trans man living and working on Bunurong land.

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