Going off script

Dear Debriefers, 

When I was four, my life started to veer off-script. An onset of strange symptoms and unexpected feelings made me feel different from the other kids.  

For years this led to loneliness – I was ashamed of my chronic illness and sexuality. But when eventually, in my twenties, I began to spend time in disabled spaces, I was struck by how many other disabled people were also queer.  

Research confirms there are disproportionate rates of disability among lesbian, gay, bisexual, transgender, queer, intersex and asexual people. Meanwhile, anecdotal reports suggest that being disabled might make it more likely for people to accept or embrace that they are LGBTQ+.   

So why does the conversation rarely go beyond the accessibility of Pride events? Why, in my own life, do I still feel so much shame about talking about this intersection?  

In this edition, I explore connections between queerness and disability, and ableism and homophobia, as I move through shame in search of a different script. 

About this edition

Celestine Fraser is a writer, copywriter and filmmaker in the UK.

Sonaksha is an illustrator and designer from India. Their illustration reinterprets Matisse's La Danse.

Disability Debrief is fundraising to bring you stories that you won't read anywhere else. This edition was brought to you by the generous support of readers. Thanks to Ugi and Tim for new contributinos.

The wrong kind of girl 

One of my earliest memories is of a conversation with my mum. It was mid-summer, 1999, West London. My hair was in a bowl cut and I wore my brother's hand-me-downs. We were walking past the school that I would start at in September. 

My heart raced as I told my mum I wanted to grow out my hair before the start of term. I had seen how the girls in my older brother’s class all had long hair, and I didn’t want to stand out.  

When term began, I started getting tummy aches each morning before school. My parents took me to see a doctor, who diagnosed me with abdominal migraine. I’ll never know whether my tummy aches were physical or psychological in origin, but with hindsight I can see how conveniently they distracted me from a fear I didn’t have words for.  

I was terrified of being seen as the wrong kind of girl.   

A hole in the ground 

So I grew my hair long. By my teens, it fell below my shoulders, and while this shielded me from the suspicions of others, it did little to quiet the dawning, internal dread that I was different.  

At secondary school in the late noughties, playground insults usually related to queerness or disability. My friends told each other ‘Stop being so gay!’ or ‘You’re lame’, as if gay and lame were synonyms for annoying.  

Everyone used the r-word. We laughed about who was on antidepressants. The syllabus had us debate the pros and cons of marriage equality, and one classmate proudly wore an anti- same-sex marriage sweatshirt to class. We were still in the shadow of Section 28, the UK law which from 1988-2003 forbade teachers from defending or “promoting” LGBTQ+ rights in schools.   

Once, a boy came up to me in the playground and asked me, with a smirk, if I knew what a dyke was. My face burned with heat as I pleaded my innocence: ‘Isn’t it, like, a hole in the ground?’ 

Pretending to be “normal” 

I had friends and was never bullied, but my social life was complicated by my strange physical symptoms. I was prone to fainting. I had chronic headaches. After class, I spent whole evenings in bed with a violent fatigue.   

At school I pretended to be “normal”, masking my symptoms behind a sense of humour and a lot of smiling. The pretence protected me, but it kept me at a remove from my peers. When I realised I liked girls, this only bolstered my conviction that I was, in fact, an alien.  

Mostly I “passed” as straight and non-disabled. But in the quiet, my shame grew loud.  

A spell of straightness 

The noughties were a different time. We were still light years away from discussions of “inclusion”, “body positivity” or “intersectionality”. Gossip mags tore apart women’s bodies, and clothing campaigns celebrated only the straight, white and non-disabled.   

American clothing brand Abercrombie & Fitch had a London store, in which ripped shirtless male models posed for Polaroids with teenage girls. My female friends returned from the store giddy and triumphant with the pictures.  

I tried to join in. I stared at shirtless photos of male Abercrombie models on my iPod Touch, in a kind of DIY conversion therapy – as if their six packs would cast a spell of straightness on me. I was convinced that I couldn’t be gay. I was already ill, for god’s sake! How many things could one person be?  

I resolved to repress my queerness. But the cost of repression was that I inadvertently managed to stop myself from feeling much of anything at all. Autumn arrived, and the leaves on the trees exploded into colour. But the world, as I saw it, was nothing but grey. 

“You. Are. Amazing” 

My late teens and early twenties were spent in a search for answers. I came out, dated different people, and experimented with different labels for my sexuality. I saw dozens of doctors, tried countless treatments, and eventually got the right diagnoses.   

After years of trial and error, I was making sense of my body and identity. But as I entered public space, as myself, for the first time, I learnt that visibility comes with its own problems. 

When I started using a mobility scooter, I was pleasantly surprised by how much people were now willing to help me, but this went hand-in-hand with being infantilised. Strangers told me they’d pray for me. In the supermarket I picked a bunch of bananas off the shelf and a woman said “You. Are. Amazing.”

Whispers and stares 

These days, I’m walking again, and no longer using a mobility aid. With a non-visible disability, I’m not patronised, but people are reluctant to help me.   

On public transport, I wear a badge which reads “Please Offer Me a Seat”. While I’m usually ignored, I’ve also had people look at the badge, look me up and down, then point, whisper or snigger. Others say they’ve been threatened. 

Meanwhile, when I’m dating another woman, it’s not unusual for people (usually men) to stare, laugh or harass us. Lesbian relationships receive a specific kind of harassment in public: homophobia, mixed with misogyny, sometimes laced with sexual aggression. In the UK, only 44% of LGBTQ+ people feel safe holding a partner’s hand. 

Rates of disability among LGBTQ+ people 

My experiences made me feel lonely, but I am far from alone in this. Recent studies from the Global North reveal disproportionate rates of disability among LGBTQ+ people. 

In the US, a recent study by Human Rights Campaign found that more than a third (35%) of cisgender LGBQ+ adults and more than half (52%) of transgender adults are disabled, compared to one in four (24%) of non-LGBTQ+ adults. Similar rates have been recorded in New Zealand. 

Here in the UK, the 2021 Census found that the percentage of disabled people who identified as LGB+ in England (6.4%) was over twice than that of non-disabled people (2.6%), with similar results in Wales. 

The mental health effects of homo-/transphobia 

The disproportionate rates of disability among LGBTQ+ people are likely due to complex causes. But one contributing factor is high rates of mental health issues within the LGBTQ+ community. 

In Canada, mental health-related disability is the most common cause of disability among LGBTQ+ disabled people. In Britain, a survey of 5,000 LGBT showed half had experienced depression in the past year, and that one in eight (13%) had tried to take their own life.

Clearly, being queer in a queerphobic world still regularly contributes to illness. And yet talking about this is uncomfortable, especially within the LGBTQ+ community.  

After all, we’ve barely recovered from a long and painful history of having our identities pathologised. It was only in 1992 that the World Health Organisation declassified homosexuality as a mental illness, and only in 2019 that being trans was finally also dropped by the International Classification of Diseases (ICD)-11.  

Nor has it been very long since the HIV/ Aids crisis – a time in which a fear of illness and contagion fuelled rampant homophobia, and HIV-related disability was widely perceived as being the moral consequence of having queer sex. 

It’s not surprising that early gay activism vehemently denied that there was any relationship between queerness and mental illness. Protestors held banners which read “Homo is Healthy!”.  

“These things still happen” 

I know we’ve come a long way. Over the last decade, there’s been remarkable progress in the global fight for LGBTQ+ rights. We have marriage equality in 38 countries. LGBTQ+ people are visible onscreen and in pop culture. Mega-corporations change their logos to rainbows every June, and straight people party at Pride. 

But we can’t conflate visibility, rainbow-capitalism or even civil rights with the extinction of queerphobia. Instead, these gains create a dangerous illusion of progress. We’re being told, by the law or the media, that we have equal rights. And yet our experiences say otherwise.  

All the while, we’re expected to perform pride; to speak on panels and wave rainbows. We’re still being shamed – but now, the shame is being denied. I feel this when I confess to a straight friend that I’ve recently experienced an incident of homophobia. They can’t believe that “these things still happen”. I can’t believe that they thought they didn’t.  

LGBTQ+ people’s experiences still vary enormously. The experiences of queer disabled people of colour are compounded by racism. And across the world, homosexuality is still criminalised in 65 countries, and in 12 of these possible punishment includes the death penalty.

In an article for Disability Justice Project, Benedicta Oyèdayọ̀ Oyèwọlé describes living in Nigeria as a queer disabled woman: “If I’m outed as a queer person or a lesbian woman, I could probably be killed and nobody would be arrested.”  

The body keeps the score 

The effects of homo-/transphobia also show up as physical illness. “The strong predictors of poor health are discrimination and victimization,” says Karen Fredriksen-Goldsen, the principal investigator of Aging with Pride, a landmark U.S. longitudinal study looking at LGBTQ+ older adult health and wellbeing.   

A large 2017 U.S. study revealed that lesbian, gay and bisexual (LGB) older adults experience more chronic health conditions than their heterosexual counterparts. LGB older adults have higher rates of cardiovascular disease and arthritis, among other conditions. Meanwhile, globally, trans people have a higher prevalence of chronic diseases. 

It’s a vicious cycle. LGBTQ+ people are more likely to experience chronic illness, which can be complicated by unequal treatment in healthcare settings. As our health issues increase, we become more likely to experience social isolation which, again, has implications on our physical and mental health. In the UK, 70% of young disabled people report feeling chronically lonely. And studies from five countries show LGBTQ+ people are more likely to experience loneliness than their straight or cisgender peers.

“Everyone’s gay” 

Being queer in a hostile world predisposes us to illness – but my experience shows me this isn’t the whole story.  

When I started spending time in disability spaces, I often heard people joke that in those spaces, “Everyone’s gay”. It got me thinking: while we know that being queer in a queerphobic world can contribute to illness, could there also be reasons why disabled people might be more likely to identify as LGBTQ+?  

Certainly, my disabled friends and acquaintances seem more likely to explore non-heteronormative sex and relationships. Is there a paradoxical freedom in being disabled?  

The liberation of claiming disability  

A few months ago, I was at a show by drag artist Midgitte Bardot, and I noticed the room was full of visibly queer and disabled people. I was there with my friend Anna Landre, a queer disabled researcher and activist, and I asked her why she suspects there's so much overlap between the two communities: 

“I wonder if once you’re “out” about having one marginalised identity, the cost of adopting another is less, because you’re already somewhat excluded from mainstream society. And once you’re in a marginalised space, whether it’s a queer space or a disabled space, you’re more likely to find out about the other and realise you are part of it.” 

Anna may be right, but the journey to self-acceptance isn’t always simple. For India Harville, an African American and queer disability justice advocate, the “cost” of adopting a disability identity was significant. Writing in San Francisco Bay Times:  

“As a Black queer woman whose ancestors survived by hiding parts of themselves deemed deviant, dangerous, and unlovable by a white ableist cis-heteropatriarchy, I wasn’t eager to publicly claim another marginalized identity. Queer had already come at a cost, and I had every reason to suspect that claiming disabled would be even more costly.”  

Yet after being introduced to ideas of Disability Justice, Harville reflected:

“I did not realize that claiming disability would actually be liberatory and one of my primary paths to learning to love all my marginalized identities.” 

A route to understanding oneself more clearly  

The relationship between disability and gender identity also seems to be intertwined. 

Research has confirmed an overlap between autism and gender diversity. The intersection of neurodivergence with gender and sexual orientation is sometimes known as “neuroqueer”. My friend Emily Simmons is a queer, disabled, neurodivergent curator. She has a theory:  

“Neurodivergent people have a resistance to the norms and a tendency to question things. So you're generally more open to alternatives to what you're told. And so you're also more likely to question your sexuality or gender.”  

Meanwhile, Jamie Hale, a queer/ crip multidisciplinary creative practitioner, told me how the medicalisation of the trans experience is double-edged:  

“The pathologisation of transness risks leading people towards a pathologisation of other parts of their identity, but it also creates community in which that pathologisation can be transformed into a positive self-identity, and a route to understanding oneself individually and emotionally more clearly."  

It’s a beautiful paradox. Queer and disabled people can’t adhere to normative scripts, but in this we are somehow liberated. Our lives haven’t been pre-written: we get to decide where the story will go.  

Visibility and backlash  

It’s been twenty-five years since I told my mum I wanted a “normal” haircut. The world has changed. My old school now puts up posters for Pride Month, and Abercrombie partners with queer and disabled influencers on Instagram.   

And yet, as our visibility increases, so does the scapegoating, violence, and backlash. On the bus, I hear primary school kids taunt each other with the same playground insults from twenty years ago.   

Meanwhile, on the world’s stage, queer, trans and disabled people have become targets in a far-right agenda. Since Trump’s re-election, the U.S. government has launched an attack on DEI, which is enabling hate speech and threatening to roll back hard-won civil rights. Here in the UK, cuts to disability benefits loom over us, while legislation on biological sex erodes trans people’s basic rights.

Changing the music 

I’m trying to focus on the things I can control. In my work as a writer and filmmaker, I can tell stories which challenge received ideas about our health or identity. In my personal life, I can show up for the friends and causes I care about.  

And to some extent, I can control what I do with my body.  

A couple of years ago, I realised that my shame wasn’t based on inherent beliefs I held about myself. It wasn’t thought, so much as felt. My shame was a conditioned response, developed in childhood; its intention to keep me safe. But at thirty, it was no longer useful: I loved who I was. It was a false alarm.   

One evening, I felt the shame return – the familiar ache in my chest, those heavy limbs, that wave of fatigue. It was as if my symptoms were saying: You know what to do. Crawl into bed. Make yourself small. 

Instead, I put music on. Tentatively, I began to move around my bedroom. Defying doctors’ advice, I started dancing.   

With my arms above my head, I was unsteady on my feet. My heart was racing; the room spinning. But as my attention wandered from those old symptoms of shame into the pleasure of new sensation, it was as if my internal story, also, was shifting.   

The stories we tell 

Slowly, in friends’ kitchens or at the pub, I began to dance with other people. I went to a ceilidh with my friend Maud, who is blind and the most enthusiastic dancer I know.

I was dizzy, but we stayed until the folk band packed up their last fiddle. At my brother’s wedding, nauseous from dancing to Charli XCX, I took a nap in the dark cloakroom, before later returning to the dancefloor.  

But my life really changed when last summer, three of my friends moved to London. All queer, we jelled instantly as a group, and soon we started going out. We wept with laughter and dissected our love lives in queer bars during London’s “lesbian renaissance”. We listened to Chappell Roan; our shame dissipating each time we danced. 

It’s not always easy. Queer spaces are often inaccessible. Recently, I was yelled at for using a disabled toilet because I don’t look visibly disabled. I missed the beginning of a gig because I’d spent an hour tearfully arguing with a bouncer. He wouldn’t let me onto the accessible stage because I didn’t have the right kind of “medical evidence”. 

These moments of shaming remind me that pride isn’t about rainbows, glitter or marches. Pride isn’t about the absence of shame, so much as the refusal to internalise someone else’s narrative. And refuse it, we must, because the stories we tell ourselves shape our bodies––our lives. 

I know the shame will sometimes return. And I’ll put my music on, and keep moving.  

See you on the dancefloor, 

Celestine 

Outro

Further reading. See Celestine's previous writing on the Debrief, on the new wave of disability media.

See more from Celestine on her website, Just Copy, and follow her on Instagram or Linkedin.

Follow Sonaksha's work: see their website for more.

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Acknowledgements 

I’m super honoured by Sonaksha’s gorgeous illustration, which was inspired by Matisse’s Dance, and made me quite emotional. Thank you. 

Many thanks to the readers and organisations whose support makes this work possible. 

I’m incredibly grateful to Peter for commissioning this essay, which I’d previously struggled to find a home for. From pitch to publication, your encouragement and support through many, many edits gave me much-needed courage and confidence. I would have abandoned this essay long ago were it not for your expertise, patience and friendship. 

Thank you to Emily, Anna, Jamie, Kyla, Katie and Mary for talking so openly with me about your experiences of queerness and disability – your insights were invaluable, even if they didn’t make it into the final essay. Thank you to the UK LGBTQ+ disabled charity ParaPride, and in particular Daniele Lul, for an insightful conversation. 

Finally, thank you to Hanlu, Marion and Alicia, for dancing with me in pubs, clubs and in the kitchen. I’ll see you next weekend.