Dear every body, today we’re talking about Beyond the Visual, the UK’s first major blind-led sculpture exhibition, which is running until 19th April 2026 at the Henry Moore Institute in Leeds. I visited the exhibition on their press day in November and though my visit was only brief, it shifted how I think about art and the senses.

Like most sighted people, the visual is my “dominant” sense. It’s with my sight that I read, watch films and TV, and explore galleries and museums. It’s with my sight, really, that I make sense of the world.

But in recent years my visual bias has been happily unsettled by my friendship with Maud Mokren. Maud is a writer and artist, and she happens to be blind. Through our conversations, her gorgeous writing, and our time together in the world, I’m repeatedly reminded that so much of the beauty in being alive is found not in the visual, but in all our other senses.

Last year, Maud got married, and I spent one hot Saturday in June at her engagement party on the Kent coast, where her parents live. At the party, I was introduced to her friend Joseph Rizzo Naudi, who is also a blind writer. As it happens, Joe worked closely with the Henry Moore Institute to create the audio description for Beyond the Visual. We’ll speak to him later on.

In this edition of Body Babble, we’ll cover:

• Exploring an art gallery with my sense of touch, hearing and smell

• The UK’s first major blind-led sculpture exhibition

• What’s the relationship between audio description and storytelling?

• What access to art is really about

• Blind artists on beauty

Please do touch

“It feels naughty”, another visitor says to me. She giggles as she runs her hands along Henry Moore’s famous 1967 bronze sculpture, Mother and Child: Arch. “Being able to touch it, you can pick up so much more,” she tells me. “The weight of it. The solidity.”

I’m wandering through the gallery, hands first. In every room, signs encourage us to “Please touch” the sculptures. I’m reminded of how when I go clothes shopping, my hands seem to lead the way, dancing towards the textures that please me: the airy roughness of linen, or that synthetic super-softness.

Yet in a gallery, it feels weird to be so tactile, to be engaging my whole body in this way.

I step right up to Moore’s Mother and Child. There are no barriers around the artworks; instead, carpeted tactile flooring and the word “Welcome” invites me to get closer.

My fingers explore the bronze. I’m struck by its coldness, how it’s both so smooth and unexpectedly rough. I tap my nails on it and make a sound. When I bend down to smell it –sharp, slightly bitter, metal– my instinct is to glance over my shoulder to check if anyone’s watching.

Sculpture, by definition, exists in three dimensions. And yet we’re usually only allowed to experience it at a distance, behind a rope cordon and using just our sense of sight.

Today is different. We’ve been let loose in the gallery under specific instructions:

“Go into the exhibition, touch everything, listen to everything!”

It takes some getting used to.

The UK’s first major blind sculpture exhibition

Beyond the Visual is the UK’s first major sculpture exhibition by blind and partially blind artists and curators. Held at the Henry Moore Institute in Leeds, the exhibition brings together sixteen international artists with contemporary and historical works. It combines new commissions by blind (and a few sighted) artists from around the world, and famous works by 20th century British sculptors Henry Moore and Barry Flanagan.

Neither Moore or Flanagan was blind, but both felt strongly that sculpture could only be properly understood when touched. “Touch is a part of your understanding of form,” said Henry Moore.

Accessibility has been baked into Beyond the Visual since its earliest stage. Each artwork is accompanied by braille signage and audio description, and the front-of-house team have had extensive training on being “sighted guides” and doing live audio description. But the most significant difference in this exhibition is that it’s pro-tactile. In other words, “every single thing can be touched” – something the Henry Moore institute has never done before.

Rings (2025) by Aaron McPeake

“We don’t teach the senses or how to use them,” says Aaron McPeake, one of the exhibiting artists. “We teach how not to use them: ‘Don’t look at that. Don’t touch that.’ There is a sort of prohibition.”

I’m stood in front of Rings (2025), one of Aaron’s latest works. Large rings made of bell bronze, smooth to the touch, hang suspended in mid-air. When I hit one with a clapper, it emits a sound which Aaron describes as “somewhere between a bell and a gong.” Of course, the smaller rings have a higher pitch than the larger ones. Banging the bells, which clink satisfyingly against my silver rings, I lose myself for a moment.

To Aaron, this is how sculpture should always be experienced:

“If you can touch something, if you can put your arm through it, then your whole body becomes involved – your proprioception. ‘Where am I in relation to this object? If I move, what happens?’ For this exhibition, I think for all of us, it was about getting into the psyche of the beholders.”

Beholders. This is a word I’ve heard repeated in several of my conversations with the blind artists and curators. At first I think it’s just a synonym for viewers, but the more I hear it, I realise it infers that perception is about more than just our sight.

And when we encourage audiences to behold the artworks with all their senses, one unexpected consequence is that we need more seating:

“Exploring sculpture through touch takes more time,” says one of the curators. “You can’t just move on. You need to actually spend time, and that’s tiring. So you need places to sit and relax as part of that experience.”

Listening to the artworks’ audio description also requires us to sit and slow down. Noticing I’ve been rushing, I pull up a stool and put on a set of headphones.

Pass Away (2025) by Serafina Min

I’m staring at an opaque glass vitrine, mounted on the wall. Inside it, I can see only outlines of dark shapes. I am sighted, yet my only way of experiencing this sculpture is through its audio description. I realise suddenly that despite audio description being available for every artwork in the exhibition, I’ve been lazy. I’ve been skipping it and leaning, as usual, on my sight.

But in front of ‘Pass Away’ (2025) by Serafina Min, I’m forced to listen to the audio description if I want to understand the work at all. Has Serafina done this intentionally so that people like me (sighted, with short attention spans) are forced to confront our ocularcentric bias? It feels like a sort of… leveller?

Serafina explains:

“Because the physical form isn’t all the way out there to be seen, or for people to touch, the audience is creating their own version of what my sculpture looks like. And in that way, to be honest, whatever I put in the vitrine matters less. The imagined sculpture that they have in their mind becomes the real sculpture.”

I ask her if there really is a sculpture behind the opaque vitrine?

She confirms that yes, behind the vitrine sit “three little sculptures” made of wax. She admits she toyed with the idea of having nothing behind the vitrine, but ultimately found:

“My own imagination isn’t as descriptive when I haven’t actually felt and had the whole sensory process of making. Only through that do I start to get the minute details that I actually want to describe.”

So why create a sculpture that can’t be seen, when she herself is sighted?

She tells me she has spent years teaching art at a school in London for blind and visually impaired students, and that she finds herself especially “drawn to audio works.” Also, there’s a certain magic in putting on headphones to listen to audio description:

“You create your own world,” she says. “It’s kind of a bubble, right? It’s close to your ear. It’s very intimate. It’s as if someone is whispering to you.”

Audio description

Pass Away is accompanied by a twelve-minute audio description, which Serafina wrote herself. It combines specific sensory details (“The shells are smooth and cold to touch”) and abstract, atmospheric imagery (“This is how you shape a creature made of wetness and memory”). It takes a creative rather than a literal approach.

My friend Joseph Rizzo Naudi is a blind writer and facilitator. His expertise is in collaborative artwork description and using blindness as a generative approach, and he worked closely with the Henry Moore Institute to create audio description for Beyond the Visual.

According to Joe, audio description is inherently creative; he jokes that calling it “creative audio description” makes no more sense than saying “Italian spaghetti.” Yet perhaps that expression is still necessary in an art scene that so often treats access as “antiseptic and clinical.”

Joe is inspired by the work of DeafBlind writer John Lee Clark:

“He's like: ‘Fuck access. I don't want access. I want what's beautiful. I want to be transported and affected and moved to all these different emotions. I want to live, I want to experience.’ And I really resonate with that.“

Joe approaches audio description by thinking about “what makes a really effective piece of fiction or evocative piece of poetry” which usually, is about “the creation of an incredibly vivid sense of a world.”

He adds:

“What have storytellers been doing for millennia, but giving people access to experiences which they are not physically able to perceive themselves? That’s audio description, by another name.”

Access to magic

“We’re always seeking experiences that make us or give us access to more than we are,” says Joe. Yet most of the time, access is conflated with transport and toilets; education and employment.

These things are crucial, of course, but as my contributors pointed out in my essay on accessible nightlife, access should also be about having equal opportunity to dancing, or sexual citizenship or art – the parts of life that make us feel alive.

What sorts of access barriers has Joe experienced in the art world?

“Oh,” he says, “From the ages of eighteen to thirty, I could probably count on my hands the number of times I went to a gallery or museum.”

He avoided galleries and museums, finding them “difficult to navigate” and “stressful.”

Given the barriers, then, what makes him continue to engage with art? What does he want from it; how does he want to feel?

“Oh, it’s magic,” he says, “It’s magic. It’s totally metaphysical and bizarre and wonderful and it’s a shortcut to sublime or God or love or whatever you want to call it.”

Aaron tells me what’s beautiful to him as a blind artist:

“The sound of waves, the sound of rain, the sound of the leaves and the trees. The differences in sound between a willow and an ash and a pine tree is incredible. The taste of things. Coffee. But the smell of coffee I think is much better than the taste of it.”

He pauses, then adds:

“But also imperfections. If something’s slightly out of phase, that’s incredibly interesting. It makes you listen. It draws you in and holds you there.”

In his work, Aaron deliberately includes what might look like visual mistakes:

“I make excuses when finishing things. I go, ‘Well, I can’t see it any longer.’ And people say, ‘But there’s still machine marks there.’ And I say, ‘Apologies, I can’t see it. I don’t care.’”

Because of blindness

I first met Joe at Maud’s engagement party. It was golden hour. Joe and I were lying on a picnic blanket in the grass, with another new friend, Sara. The sun was low in the sky, and the three of us, blissfully tipsy, were looking up at the canopy of trees; how their leaves caught the light.

Slowly, it emerged that although we were looking at the same thing, we weren’t quite perceiving the same reality. Joe, in particular, was seeing something different. Joe –and I’d briefly forgotten– is blind.

He told us what he was seeing. He used the word kaleidoscopic. He tried to explain the shapes in his vision. Then he brought up a term I hadn’t heard before: blind aesthetic. But I’m not sure Sara or I could quite follow. Maybe we’d had too much to drink. I made a mental note to ask him about it again sometime, sober.

Nine months later, Joe and I are close friends. Does he remember that conversation?

“Yes,” he laughs, “But I think I was a few Negronis deep.”

What does he remember?

“We were looking up at the leaves,” he says, “And the leaves were catching the gold of the canopy.”

What did he mean by blind aesthetic?

“The way I was seeing the canopy when we were looking up was beautiful to me,” he says. “There was so much there, not even in spite of, but because of the unusual, trippy, abstract, mosaic of vision that I have.”

He explains:

“To think about blind aesthetics is to consider the ways the blind maker, artist or writer can approach the making process and make something through their blindness rather than against it.”

I’m still trying to imagine what Joe was seeing in that moment. I’m trying to see things through his blindness, rather than against my own sight. I guess this is the challenge of friendship; the trying and often failing to understand what it’s like to be in another person’s body.

And yet we find ways to reach each other – to get beyond our skin.

Art and audio description offer us a way to collapse the boundaries of our bodies. As does friendship.

What a gift!

Celestine

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Thank you…

Thanks to the Henry Moore Institute and Sam Talbot PR for inviting me to the Beyond the Visual exhibition press day. Thanks to Joanne Crawford, Rob Harris, Rob Hill and Sara Romanin Jacur for the photos.

Thank you to Dr Aaron McPeake and Serafina Min for talking to me about your artworks. Thank you Maud Mokren and Joe Rizzo Naudi for your friendship, and Joe for chatting with me about audio description and blind aesthetics.

Thank you to for essential editing.

Please note: I was not paid to write this essay, and I’ve had complete editorial control over its content.

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Dear every body,

Ten years ago, my own experience of chronic illness inspired me to make ill, actually, a short documentary film about young disabled people and online identity. Since then, I’ve somehow made my career in disability media in the UK. I’m a writer and filmmaker, and I work with clients as a copywriter, editor, speaker and trainer. My films have been programmed on the BBC, and my writing has been published in VICE.

Yet I often feel lost within this work. With my disabled artist friends, we talk about access barriers, burn-out and the pressures of having our work politicised. But there is not yet much of a wider conversation about the expectations placed on disabled artists to live up to the demands of activism.

Today we’re talking about the politicisation of disabled artists’ work.

Are we allowed to tell the stories we want? What’s the relationship between art and activism? And can art actually end ableism?

These are some of the questions I explore in this essay…

In this edition of Body Babble, we’ll cover:

• The inaccessibility of the film industry

• How meeting a group of disabled filmmakers changed my life

• Art and empathy

• Pressure from activists and a lack of support from institutions

• A “disabled gaze”

• The role of art vs. activism

“You do it because you love it”

In my early twenties, I dreamed of being a filmmaker. After graduating from university, I did my best to get work experience, but internships and first jobs were invariably inaccessible to me. Job descriptions referred to long days and early starts, driving long distances and lifting heavy boxes.

Once, at an information session about short film funding, hosted by an acting school, I arrived late to find fifty people gathered in a circle. They were –inexplicably– doing star jumps. Seeing me bewildered, they told me to join in, explaining they were ‘warming up’. Back then, I had neither the language to explain my illness nor the courage to stand out as different. So I did as I was told, performing my star jumps and saving my tears for the journey home. I spent the week in bed recovering.

On another afternoon, between bouts of vertigo, I made it to the British Film Institute (BFI) for a talk by a well-known British director. His advice to the young audience was to expect long hours, exhaustion and to slowly work your way up. ‘This is what it’s like,’ he laughed, ‘You do it because you love it.’

After the talk, the audience swarmed the director. But I slipped instead to the back of the room and found the event’s moderator. I told him I had a chronic illness, that I could never be a runner. Did he know any ‘people like me’? He was taken aback, but kind. Later he followed up to put me in touch with the BFI’s Disability Screen Advisory Group: a group of disabled filmmakers who met up to discuss disability inclusion in the film industry.

Meeting these people changed my life. They introduced me to the social model of disability. They taught me that access was a right. They showed me the power of collective identity. I was plunged into rooms with more wheelchair-users than I’d ever seen in one place, into conversations about disability representation in film. In 2020 and 2021, the group expanded to include more filmmakers. Some of us had non-visible disabilities, some were autistic, some were people of colour or LGBTQ+. Together we worked on Press Reset, a campaign calling for better representation within the film & TV industry.

A disabled new wave?

In the last year, with the rise of the far-right and backlash to “woke” diversity, equity, and inclusion initiatives, there has arguably been less spotlighting of stories by underrepresented voices. And yet, for much of the last decade, it felt like what me and my filmmaker friends were seeing in London was part of a growing, global trend of disability media – a disabled new wave.

Disability stories were being funded, as well as recognised in awards seasons. On Netflix, recent disabled-led titles ranged from American disability rights documentary Crip Camp to Zambian drama about life with albinism, Can You See Us?. Disabled characters were gaining their own complex storylines in some of the platform’s biggest shows.

For a few years, it really felt like the focus of the disability movement was shifting. As accessibility was becoming more enshrined in our laws globally, was our focus moving from legislation to representation? Were our leading activists now more likely to be holding a camera to the world than holding a placard at a protest?

I think we even saw some of this transition in the life of Judy Heumann. Her leadership in disability rights came out of fighting a legal case, and she played key roles in US disability legislation as well as the UN convention. But in her later life, she embraced the power of storytelling, pouring her energies into social media, a documentary, a memoir and a podcast.

Art for empathy

In his 2021 MacTaggart lecture, British screenwriter Jack Thorne spoke urgently to the camera. With teary eyes, he called for better disabled representation in TV and film. We were in the middle of a pandemic in which the UK government reduced disabled people to their ‘underlying health conditions.’

Thorne argued that authentic onscreen representation could help reverse this harmful narrative: TV was an ‘empathy box, in a corner of the room.’ He sees it as a vital part of his work to make art to ‘further the disabled cause’.

Of course I agree that art can create empathy. The idea for my first film ill, actually came out of a need for my friends to understand me. I was 19, ill and stuck in bed, and they were at university, partying. By making a documentary about young people with chronic illnesses, I hoped I could show them what I was going through.

But making that film showed me that art would never be just about my personal catharsis. We were amazed that our call-outs for contributors were bombarded with interest. We were amateur filmmakers, and yet our every decision was evaluated like we were proposing a crucial new piece of policy.

‘Why are you focusing on disabled people under 30, when older people are more likely to be disabled?, they commented. ‘Why are you making a doc about people with invisible impairments, when hate crimes are rising for people with visible ones?’

Ending ableism

The questions increased when I started production on Better, a short fiction film with a bigger budget and funding from the BFI. With so few authentic, complex disabled stories out there, we felt pressure on our short film to do it all. As if we could undo decades of misrepresentation in fifteen minutes. As if we could end ableism, if only we put the words in the right order.

Better is a film is about the tension between two sisters, one of whom has a chronic illness. We tell the story from the point of view of the non-disabled sister so as to more effectively make the point that disabled people don’t need to be “fixed” or get “better”. As producer and associate writer, I was conscious that every small decision would be meaningful: from the production design of the disabled character’s wheelchair to the colour of the pills she takes.

We are regularly asked why the film centres the non-disabled sister. And some questions get more personal. I am asked (usually by other disabled people): ‘What condition do you have? What about your director? And the lead actress? Is she disabled? Or is she ‘cripping up’?’ The questions come from inside my community, yet the experience reminds me of when I was interrogated by the Department for Work and Pensions about my application for disability benefits.

I agree that art has a social responsibility. But I’m not sure what grilling disabled artists achieves for disability justice, and I worry that characters summoned from checklists by activists will only ever exist in two-dimension. Besides, if we only write narratives that ‘further the disabled cause’, don’t we risk leaving other narratives behind?

If we only write about disabled people who are sassy, empowered or politically engaged, what happens to the disabled people who are meek, self-pitying or arseholes?

Under the spotlight, without support

I feel sensitive to judgment from inside my community, and I’m also dealing with a systemic lack of support from the people with the power. I’m sandwiched between online activists and inaccessible institutions.

In 2019, my film ill, actually was commissioned by a film fund run by the BBC, BFI and an indie production company. The film was one of 11 projects selected from 450 applications. Our execs thought the idea was interesting and original – they too wanted to watch a film about young disabled people and online culture. We got the greenlight. We were thrilled.

With only eight weeks from commission to delivery, I knew it would be intense. But since we were making a film about disability, I assumed that at some point someone would check in with me about my access needs. My execs’ approach to access was, at best, reactive. An accommodation was only made when, after working myself to exhaustion, I sent them a distressed, dramatic email from the waiting room of accident and emergency.

Organisations and institutions want to make disability media (or, if we’re feeling cynical, to be seen to be making disability media). But they’re still so often unequipped or unwilling to create a working culture which is accessible for disabled artists.

At the end of 2023, I won the Shaw Trust’s Disability Power 100 award for the UK’s ‘most influential disabled person in media and publishing.’ I was honoured by this recognition of my hard work, and grateful for the visibility. But as I published a celebratory Linkedin post, I couldn’t help but squirm. The glamorous pictures of me on stage accepting an award were in dramatic contrast with my everyday life as a disabled freelancer.

“Like I didn’t have a choice”

Like many disabled creatives, one of the reasons I freelance is because it’s more accessible for me. My working days are productive but short, wedged between physio sessions, resting, doctor’s appointments and medical admin. It’s often really hard. I don’t get sick pay or holiday. Projects come in at the last minute and require a short turnaround. When I get a new client, my access needs are frequently ignored. People take ages to pay me, and I don’t get paid enough.

At the same time, I love my work – I really do. I love writing articles, interviewing interesting people, making films with brilliant collaborators and working with clients who are passionate about what they do. I find disability endlessly interesting.

But occasionally I wonder if I could have been a writer or filmmaker, if I didn’t make stuff about disability? Would I have been given those (minimal) access provisions, if I’d I wanted to make films about something else? Or would I have got stuck at the star jumps?

In Reid Davenport’s poetic and personal documentary I Didn’t See You There, Reid asks his mother what she thinks of the fact that he’s a filmmaker. ‘You’re artistic,’ she says, ‘And it’s the expression of your art.’ But we sense this is not the whole story.

‘Did you see how I became politicised over the last ten years?’, says Reid. ‘Sometimes I feel like I didn’t have a choice. Like, I couldn’t get a 9 to 5.’

A disabled gaze

Despite my frustrations, I’m hopeful for the future of disability media. Over the last few years, disabled artists have been making new and exciting work which explores many of the same questions I’m asking.

My friend Emily Simmons set up Crip Cinema Archive, an archive that seeks to document disability on screen. The archive’s definition of crip cinema is open and inclusive – it doesn’t point fingers or gatekeep. It acknowledges that great art is born out of different conditions, and resonates for different reasons. Crip cinema might be defined only as a shared sensibility or perspective – a disabled gaze.

Recent documentaries find fertile ground in exploring point of view. In I Didn’t See You There, Reid shows us Oakland from the vantage point of his wheelchair: his camera shaking as he navigates the changing textures of the tarmac. In her acclaimed feature documentary Is There Anybody Out There? Ella Glendining searches to find someone else with the same rare disability as herself. In unseen by Set Hernandez, we follow a blind, undocumented immigrant in the United States through an out-of-focus lens.

None of these films tries to reverse every harmful historical trope. They simply show us what their protagonists see (or don’t see) from where they’re standing (or sitting). They’re personal and they move us.

Art isn’t a replacement for activism

I’ve yet to find a way of working that doesn’t make me ill. But for all my fatigue, somehow I keep making things. Because I want to, have to and I don’t know how to stop.

Art won’t wash away all that’s wrong in the world. We still need policies, rallies and picket lines. We need campaigners who chain themselves to buses and activists who evacuate disabled people from warzones. Art isn’t a replacement for activism.

But when we’re moved by a work of art, we feel it in our bodies. We stand transfixed in front of a painting, turn the last page, or leave the cinema into daylight – and something inside us has shifted.

If we stop expecting the art we make to end ableism, we can sit back and enjoy it, washing over us.

Celestine

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Want to watch my films?

• You can watch ill, actually (2019) here if you’re in the UK, or here if you’re anywhere else in the world.

• You can watch BETTER (2023) here, from anywhere in the world.

I’d love to know what you think!

Leave a comment

Thank you…

Thanks again to Peter Torres Fremlin for commissioning, editing and publishing this essay in Disability Debrief in May 2024, under the title “A new wave of disability media.”

Thank you to for essential editing of this updated version.

Dear every body,

Did you know that the UK government used to lease disabled people a tiny blue three-wheeler? And that by the mid-1970s, these cars were driven by 25,000 people?

It’s UK Disability History Month (20 November- 20 December), and today we’re talking about the invalid carriage, also known as the Invacar. If you’re from a similar generation to me (b. 1995), you might not be familiar with this little blue “disability car.” I first came across it a few years ago, while browsing the British Film Institute’s online archive. I was fascinated to see footage of a noisy, blue three-wheeler that looked like it would topple at the slightest wind.

How had I never heard of it? How did it feel to drive one? And how much more disability history had I missed? Immediately, I was obsessed. I even wanted to make a film about it. But information online was scarce and repetitive, mostly spread across motoring forums, Reddit, and the odd thread of Boomer Facebook comments. The youngest ex-drivers of invalid carriages are now in their seventies, and finding first or even second-hand sources is becoming a challenge. Several times I’ve discovered a new lead, only to find out that the person had actually died months or years before.

Time is running out. We have years, not decades, to capture this piece of history using first-hand sources. And it’s not just about its cute aesthetic (although I agree, it’s adorable). I think that understanding the invalid carriage might help us navigate the ongoing fractious relationship between disabled people and the state.

Never has this been more relevant than in the UK in recent months. An ongoing scapegoating of disabled people has become backlash against Motability, a scheme which leases adapted vehicles to disabled people, and which was introduced in 1976 as a replacement for the invalid carriage.

I want to speak to a generation who knew the Invacar, to understand why it was eventually made obsolete by Motability. Was the invalid carriage loved? Or hated? Was it freedom on three wheels? Or a fibreglass death-trap?

Let’s find out…

In this edition of Body Babble, we’ll cover:

• What’s an invalid carriage?

• The mission of the Invalid Carriage Register

• Simon and Kay’s memories of their grandfather and his invalid carriage

• Problems with the vehicle

• How the invalid carriage was finally scrapped and replaced by Motability

• Why artist Tony Heaton spray-painted an invalid carriage gold

• The role of the invalid carriage in disability history and in understanding today’s backlash against Motability

What actually is an invalid carriage?

It sounds archaic, but “invalid carriage” is currently the legal term for power wheelchairs and mobility scooters in the UK. However, for much of the 20th century, “invalid carriage” referred specifically to any small, three-wheeled one-seater vehicle which was leased by the UK government to disabled people.

Different kinds of vehicles can be described as invalid carriages, including the 19th century wicker Bath Chair. But most often, invalid carriage is synonymous with the iconic Invacar: a pale blue motorised tricycle with a fibreglass shell which, from the ‘50s to the ‘70s, was leased by the UK government to qualifying disabled people. The “classic” blue invalid carriage is often the AC Model 70 Invacar, but variants were made by other manufacturers, like the Thundersley or Tippen Delta. In this article, I will be referring to these interchangeably as “Invacars” or “invalid carriages.”

Putting the vehicle back into public memory

Simon McKeown is the director of the Invalid Carriage Register, a volunteer-run project which promotes and conserves the history of the invalid carriage:

“Our mission is to put the invalid carriage back into public memory, because it’s currently missing,” he says. “Especially from young people’s memory.”

The project does its best to track all known invalid carriages worldwide, of which there are believed to be 300-400. Most of these are found in the UK, but “a small amount were distributed through the Commonwealth, so some of these vehicles are in different countries as a result.”

As medical tech and mobility aids rapidly develop, Simon thinks there is more need than ever for designers to be aware of the history of the invalid carriage. For example, a few years ago, Toyota ran a competition which awarded $1 million to the most “game-changing technologies” which could “improve the lives of people with lower limb paralysis.” The finalists included exoskeletons and a self-balancing, intelligent wheelchair.

But Simon is concerned that those young designers won’t have been able to access a design history which included the invalid carriage:

“Without history, we often think that it’s never been done before. But without knowing that these vehicles existed, how do you design better vehicles?”

A family history

For Simon, the invalid carriage represents first of all a “family history.” Simon’s grandfather, Ian Jones, had osteogenesis imperfecta, also known as brittle bone disease. He couldn’t walk very far and supported himself with a crutch; mostly, he used a wheelchair. He was from North Yorkshire, working class and “extremely poor” because although he was “very, very clever […] nobody would hire him.”

This was the late 1950’s and early ‘60s, decades before the UK would pass its 1995 Disability Discrimination Act, which would make public transport accessible to disabled people (at least, in theory).

“Before mobility was a provision, people couldn’t travel very far,” says Simon. “They couldn’t necessarily work. He couldn’t just get on a bus.”

When Ian was leased a government-issued invalid carriage, “it gave him a level of freedom.” He was able, for example, to take one of his first and only holidays, to a caravan park which he drove to on his own. Simon shows me a photo of Ian on that holiday (see below). He’s supporting himself on his crutches, and proudly leaning against his Tippen Delta, with a pipe in the corner of his mouth and a smile.

“I think you can see that he’s pleased", says Simon. “He genuinely liked the car. But I don’t think he enjoyed breaking down on his own particularly.”

Freedom, at what cost?

The invalid carriage was certainly cute, colourful and innovative. And there’s no doubt that for many, it provided an unprecedented freedom. But the reality of driving the vehicles was less than ideal: they were noisy, smelly, unstable, uncomfortable, poorly-heated and constantly breaking down. Built with a lightweight fibreglass frame, they were known to tip over in strong winds or even catch fire.

In a news report from ATV Today in 1969, a reporter asks three disabled motorists about their experience driving their invalid carriages.

“I broke down seventy-two times in six weeks”, says Mrs Goodman, who at the time of interview had been driving one for nineteen years. She adds: “The smell of the exhaust that comes into the cabin is really obnoxious.”

A single-seat design

One of the most controversial parts of the design of the car was that it was designed to seat only one person—as if disabled people had no families, friends or partners of their own. On the dashboard, a sign read “Passenger Carrying is Forbidden”.

This had its consequences. In the news segment from 1969, a disabled driver says:

“I have known a case recently where it has actually split a young married couple, in that the husband became disabled. He was issued with a vehicle. But because he couldn’t take his wife and child with him, she left him and he had the responsibility of the child, which had to be put in a home.”

Insisting that I should understand the unique “physical experience” of being inside an invalid carriage, Simon puts me in touch with his sister Kay. At ten years older than him, she has more memories of their grandfather’s invalid carriage: he died in 1971, when she was fifteen. “I was brought up by my grandparents,” she tells me. “I was their daughter.”

I ask Kay how life changed for her grandfather when he was leased an Invacar. “It was good and bad,” she says. It meant “he actually had some kind of transport” and they could travel slightly further afield:

““We would go to these little country places on the bus,” she says.

But their freedom was limited by the Invacar’s single-seat design:

“We had to go separately. Me and [my grandmother]. And he would drive the blue thing. We didn’t know whether he’d make it or not. We didn’t know where he was and he didn’t know if the bus had got there.”

Kay remembers being six or seven and helping her grandfather go to the shops or into Middlesborough, their nearest city. In order to accompany him, she had to crawl into the front of the Invacar and fold up at her grandfather’s feet:

“Obviously there was no pedals,” she says. “So as a small child, I could fit. I would be sat on my bottom with my knees hugged up to myself. And then we would get his wheelchair dragged in and the door shut.”

“What we did was against the rules,” she admits. But how else were they supposed to get around as a family? Buses weren’t yet accessible, and this was “a time when there was no dropped kerbs.”

Kay says, with a shudder:

“If you step back and think about it… I was in something with a fibreglass body, hiding in the nose part at the front. Nobody knew I was in there. There was no evidence. If there’d been any kind of accident—it’s horrendous.”

The end of the invalid carriage and the birth of Motability

With mounting safety concerns and campaigners raising awareness of the fact that a single-seater didn’t suit the needs of most disabled people, in 1976, the invalid carriage scheme was finally scrapped. Production ended in 1981, and any remaining cars were recalled and banned from use on roads in 2003.

Looking back, it seems obvious that the cars were grossly unsuitable. At the time, however, many disabled people had come to rely on their vehicles, and had little faith that the government would quickly come up with a more suitable replacement. When the scheme’s closure was first announced, there were protests.

In a TV news report from 1977, protestors arrive, engines revving, in their invalid carriages, at a hotel in Solihull where Social Services Secretary David Ennals was about to make a speech. One of the little blue cars has been adorned with Union Jack bunting and a handwritten banner which reads “IT’S A RAW DEAL, ENNALS.”

An older woman protestor is the first to confront Ennals:

“How would you feel if you lost the use of your legs? What would be your position then? Someone ought to chop your legs off for a month and just see how you can get on with that!”

When Ennals patronisingly replies, “Well, look dear, I spent three years in hospital after the war, that is why I’m so committed to doing more to help disabled people,” the protestor raises her voice: “It doesn’t sound like it,” she says. “It sounds like we’re fighting a dead duck!”

Another protestor, an older man, also confronts Ennals:

“You’re going to take my legs,” he says, “And you’re going to give me nothing?”

Later in 1977, the government introduced the Motability scheme, which replaced the invalid carriage. Motability is a UK-wide scheme which leases disabled people cars, wheelchairs and mobility scooters (sometimes with adaptations), in exchange for giving up the mobility allowance of their disability benefits. In 2025, the scheme had 860,000 customers.

But in recent months, Motability has been all over national headlines, attracting particular hysteria from right-wing press and politicians. Ahead of cuts to the national budget, leader of the Conservative Party Kemi Badenoch announced: “We will restrict Motability vehicles to people with serious disabilities. Those cars are not for people with ADHD.”

Meanwhile, MP Lee Anderson, welfare spokesperson for the far-right party Reform, called to bring back the invalid carriage:

“I remember back in the day if you were on disability and you wanted a car from the state it was a blue three-wheeler. What’s wrong with that? Let’s go back to that.”

There is, of course, plenty wrong with Anderson’s statement, which seems not to be based on any real understanding of the history of the car. But it struck me as interesting how the invalid carriage—which is so unfamiliar to millennials and Gen-Z—remains an object of significance and fascination in an older generation’s collective memory of disability.

“From Lame to Lamé.”

“It’s the most iconic disability object,” says artist Tony Heaton OBE, one of the most eminent voices of the UK’s disability arts movement.

In 1971, at the age of sixteen, Tony became disabled after an injury and was leased an Invacar (which, like a motorbike, sixteen-year-olds were allowed to drive on a provisional driving license).

“When I had my transition into the world of disability, I transmuted from a motorcyclist to an invalid carriage driver,” he says. “It was kind of a culture shock.”

But he adds:

“I embraced it. It still had an engine. I could still fire it up and drive around and be independent. I screwed it to its limits, really. I went as fast as it could. And I was still surrounded by my friends, who were all bikers. So we would make this formation of three or four guys on motorbikes with this little blue invalid carriage in the middle of it. Like some kind of weird convoy!”

When Tony turned seventeen, he gained his full driving license and was leased a Mini, which was safer and could take passengers. But decades later, he found himself thinking fondly back to his old blue Invacar.

Tony began to work on an art installation, inspired by the idea of alchemy, and how alchemists “turn base metal into gold”. He managed to source an old invalid carriage online, which was “rotting away in a field” near Bristol. He replaced the rotten metal door, stripped down the fibreglass frame, and took out the engine, the seat and the gearbox to make the car as light as possible, leaving only the steering wheel, so it could still be steered if necessary. Then he spray-painted it gold.

Finally, he mounted it on a plinth at an angle, and added a custom numberplate which reads LAMÉ. The piece, titled Gold Lamé (gold lamé is a metallic fabric), has exhibited across the world, including at the Venice Biennale. It’s currently at Yorkshire Sculpture Park.

“It’s crashing to earth from up in the heavenly stars, where they’ve all been withdrawn from service,'“ says Tony. “They’re all up in car heaven, but this one has escaped and come crashing back down to ground. That was the mad idea.”

Tony explains that his work’s earlier title, “From Sp*z Blue to Gold. From Lame to Lamé.” created some controversy. When it was exhibited in Glasgow’s Riverside, the museum received complaints.

Tony tells me that people used to refer unashamedly to invalid carriages using ableist slurs, calling them “cr*pple cars” or “sp*z mobiles” or “chariots.” Through the title of his piece, Tony reclaims those slurs he was once called:

“Of course it’s offensive,” he says. “But I own it because that’s what people called us. It’s me, my language—not yours.”

And he adds:

“We didn’t have the Disability Discrimination Act to say, ‘You can’t use that. It’s against the law.’ Disabled people got routinely discriminated against back in the seventies and eighties.”

Forward-looking but stigmatising

In some ways, the invalid carriage was revolutionary. After WW2 in particular, too many people were disabled by a lack of mobility. The invalid carriage was a pragmatic solution by a government that wanted to get more people out of their homes and into public life. It wasn’t so much a car, as a prosthetic.

“The clever thing about the scheme was that you got your personal mobility assessed as part of your medical assessment,” says Simon. “You were with your GP, you were at the hospital, you were with the physiotherapist, and they all combined to decide what vehicle you should get, whether it be a house chair, or crutches, or indeed an AC Model 70. It was really forward-looking.”

It was an innovative idea, but in reality the invalid carriage was uncomfortable, impractical and incredibly dangerous. Like a lot of disability design, it was clearly conceived without enough input or collaboration from disabled people. But what if it were brought back today, with a better design, more seats, and all the flaws of its original engineering ironed out?

I would still argue that it would be dangerous, albeit for different reasons. As we heard earlier from Tony, the cars were stigmatising, and their drivers often received ableist abuse:

“You were totally marked out,” he says. “You were like the solitary cripple in his bright blue invalid carriage.”

In our current climate, I’d be concerned by any vehicle that singles people out as disabled or as recipients of state benefits.

For several decades in the UK there’s been a pervasive cultural obsession with the idea of disabled people “faking it.” In the noughties, this rhetoric revolved around the term “benefits-scroungers”; after Covid, the government used the term “work-shy.” Now, the Motability scheme is being attacked in similar terms. Inflated claims in the right-wing press that people with conditions like anxiety or ADHD can claim a “free” BMW or Mercedes are accompanied by a flurry of calls on social media to “bring back the Invacar.” “That’ll root out the Motability scammers”, says one user on X. “Whatever happened to the good old AC 70?”, asks another.

I think this is why disability history is important. Because when today’s populist politicians try to re-write the past for their own motives, we can stand firm with the weight of our testimonies.

We should remember the invalid carriage, but we mustn’t bring it back. It was dangerous and stigmatising, even dressed in baby blue.

The future, at least, can be any colour we choose.

I’ll see you in it,

—Celestine

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Thank you…

A huge thank you to Simon McKeown, Kay McKeown and Tony Heaton for sharing their experiences and memories of the invalid carriage with me. Thank you also to Simon for providing the photo of his grandfather Ian, and Martyn Evans, David J. Green and Richard Pohle for the other photos, sourced via Alamy.

Thank you once again to for essential editing.

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Dear every body,

Welcome to the third edition of Body Babble! I hope you’re all well.

A few updates before we begin…

1. Priti Salian from the excellent Reframing Disability (also on Substack) published a lovely interview with me about my work. I’ve been a fan of Priti’s newsletter for several years so it felt very exciting to be featured. Have a read!

2. You may or may not have noticed that I’ve been recording audio versions of each newsletter. You can listen to these as a voiceover (above) or on Spotify, if that makes things more accessible to you (or you’re dying to hear me do ASMR).

3. If you enjoy this edition, please let me know! Like, comment, subscribe, share. I won’t know you’re reading unless you let me know you exist!

   

Today we’re talking about accessibility in nightlife. Given I ended my last newsletter with an ode to dancing (and the sign-off “See you on the dancefloor”), it seems only fitting that we’re now exploring how Deaf, disabled and neurodivergent people can participate in nightlife.

This is a topic I’ve become interested in over the last few years, as it’s become increasingly relevant to my own life. For a lot of my twenties, I was too ill to leave the house in the daytime, let alone think about going out at night! But as I approached thirty and my health and mobility were steadily improving, I found myself dreaming of the dancefloor. I say dreaming, because there was one slight obstacle: where to go?

My friends, who were beginning to settle down, were less inclined to go out than they were a decade ago. Nights catering to queer women seemed few and far between and anyway, I’d struggled to make a group of queer friends in my twenties because I’d been so unwell. And then there were the access barriers: how I had trouble standing still; my fatigue; the heat; the lack of seating.

I know I’m not the only one feeling the push and pull of the dancefloor. In the UK in recent months, a wave of events and initiatives are striving to make clubbing more accessible. I’m thinking of Deaf Rave, who put on club nights for the Deaf community. Or United by the Groove, which recently hosted Manchester’s first accessible rave. Or the subject of today’s newsletter, Dancefloor Intimacy, which encourages us to imagine our own nightlife utopia by asking: “What’s your dream accessible clubbing experience?”

By the end of this edition, I hope you’ll tell me yours.

In this edition of Body Babble, we’ll cover:

• Why Ali Wagner set up Dancefloor Intimacy

• What a Dancefloor Intimacy focus group looks like

• People’s perceptions about disabled people and partying

• Physical barriers and discrimination

• What would an accessible dancefloor look like?

• Communicating accessibility and giving people choice

• The nightclub as a space for sex and politics

• Why we need the dancefloor

Discovering Berlin’s clubbing scene

When Ali Wagner moved to Berlin, she threw herself into the city’s vibrant queer clubbing scene. Quickly, nightclubs became her “second home”:

“They’re somewhere where I’ve met so many of my cherished friendships. Where I’ve realised my queerness. Where I’ve learned so much more about myself.”

But while the club was initially a place for Ali to escape and experiment, at some point the lifestyle began to take a toll. “I loved it,” she says, “I was having the time of my life. But then I realised, ‘Oh fuck,’ I was doing that because I felt a certain way.”

While we might associate a Berlin clubbing scene with freedom, in reality Ali found it “super exclusive”. She felt anxiety in crowds, experienced aggression from men, and struggled with the fact that there was never anywhere to sit down. All she often needed was to be able to step away from the dancefloor, “chill” and have a conversation with someone:

“When clubs don’t allow you to relax at times and feel safe, some people can lean into abusing substances, and I realised that was something I was doing, because I was trying to cope with the fact that I was so overwhelmed.”

Putting accessibility at the forefront of club culture

40% of disabled people report being “unable” or having “extreme difficulty” accessing nightclubs or music venues. According to Ali, the problem is that clubs usually only consider accessibility as an afterthought:

“It’s like: ‘We’ve sold all the tickets, we’ve designed the event, we’ve invited everyone to come.’ And then: ‘Oh, well, how can we make this more accessible?’ And I think my dream is that it’s something that actually inspires events and inspires design.”

As part of her final-year thesis, Ali began to research how neurodivergent people experience nightlife. But when she received a grant from her university, she was able to expand that research to include more people:

“There are so many disabled individuals, neurodivergent, Deaf, blind, chronically ill individuals, who can’t access or don’t feel safe or welcome in these spaces. Or they don’t have anyone to go to these spaces with.”

She launched Dancefloor Intimacy: a movement that puts accessibility at the forefront of club culture. The initiative runs focus groups with disabled people, and those who attend are paid a stipend (most recently, they’ve been working with London’s iconic Fabric).

“My purpose is to be the facilitator,” says Ali. “The disabled ravers are the ones actually making the change. They’re the ones giving their honest opinions and insights.”

People don’t think disabled people want to party

At a Dancefloor Intimacy focus group, half a dozen young disabled people are sat around a table, armed with pencils, paper and crayons. Behind them, text on a big screen asks “What is your ideal accessible clubbing experience?”. If it’s refreshing to be asked this, it’s also a little jarring—it’s hardly a question you hear every day.

“People don’t think that disabled people want to go to clubs and festivals,” says Ali. Although this is partly because of physical access barriers (wheelchair-users “can’t get through the door”), it’s probably also because up to 80% of disabled people have a non-visible disability.

Tatum, a creative and producer with muscular dystrophy, is one of the focus group’s participants:

“People think, ‘Oh, disabled people don’t want to be here, because we don’t see them.’ So then access isn’t implemented, so disabled people can’t come, and the cycle goes around. But when access is actually put in, you see how many disabled people turn up.”

Dealing with other people’s perceptions

Katouche, a content creator with cerebral palsy, is also one of the group’s participants. She “loves a night out, every part of it” and enjoys “the breadth of urban music”, from R&B to Afrobeat, rap, bashment and soul.

But when she goes clubbing, “people can point and laugh”:

“You are a spectacle. In general you don’t see visibly disabled people in public life. And I feel like the nightlife scene is a microcosm of the power and social dynamics that exist in society. So people are quite astonished to see a disabled person in the club.”

Tatum, who uses different mobility aids on different days, often gets intrusive comments from strangers. Using a walking stick, they get comments like: “‘Oh God, you’re that old already?’”. And when they use their wheelchair, “people either try not to acknowledge me or they’re like, ‘Oh, it’s so cool that you’re out.’”

Discrimination at the door

Katouche’s experience of going clubbing is further complicated.

“There’s layers to it,” she explains. “Especially when you’re dealing with a community within a community. There’s no regard for Black disabled people, especially Black disabled women.”

As well as being refused entry on account of her disability, Katouche has experienced racism on the club door. And it’s hard to find venues which feel welcoming or cater for Black disabled people:

“The venues that have access aren’t typically venues that would play the music that I would enjoy. And the venues that play the music I enjoy don’t typically have access.”

And she adds:

“And the venues that have access and have the music I’d enjoy don’t allow Black people in the venue.”

Getting onto the dancefloor

As well as discrimination on the club door, there are often physical access barriers to getting inside. Sophia, a disability advocate and wheelchair-user, is another a participant in the focus group. Though she “loves to dance” and enjoys salsa, reggaeton and R&B, she says:

“I usually end up dancing in the street or at home, because unfortunately finding a club is difficult. Traditional clubs tend to be in basements or up stairs.”

Tatum describes the lack of physical access as a “gut punch”:

“I either can’t get into the venue at all, or I’m sent round the back, away from my friends, down some sort of service lift. And when I get in, I can’t access all of the space anyway. Or I can’t get through on the dancefloor.”

Because of this, Tatum sometimes chooses to go to the club without their wheelchair. But this has consequences:

“If I’m not in my wheelchair the whole time I’m on a dance floor, I’m having to think about keeping upright. I’m in so much pain that I can’t really have fun.”

What would an accessible club look like?

So what would it look like if the dancefloor were accessible? If every disabled raver could not only get through the door, but get a drink, go to the loo, have a dance or make out with a stranger?

This is the part of a Dancefloor Intimacy focus group where participants get out the colourful crayons and sketch their dream clubbing experience.

“We were trying to picture what’s realistic,” says Tatum. “But also: what’s our utopia? Why not strive for utopia?”

Some access needs are pretty universal. Everyone wants affordable tickets, ramps, lifts, accessible toilets, good local transport links, and friendly staff trained in disability equality. But others imagine something more specific.

Tatum says, only slightly in jest, that their dream music festival would just have:

“Food trucks. That’s my utopia.” But they add, on a more serious note, “I have chronic fatigue, so I need to keep my energy up,” and that disabled people should be able to skip long queues for food.

One of the biggest challenges of a night out, for so many of us, is the lack of seating. Even if we can dance for a while, most us would have more endurance if we could pace ourselves and also sit down.

“I’m not going to pay £20 on your party knowing there’s nowhere for me to sit down,” says Ali. “That’s not how I want to spend my Saturday night.”

Tatum suggests a solution:

“Say there’s not a lot of space to have chairs, on the walls of a space [you could] have pull-down chairs that can go back up again.”

Lots of people also mention the need for “time-out space”. Nightclubs are invariably hot, noisy, crowded, and overstimulating, so especially for people who are neurodivergent or chronically ill, having somewhere to decompress and step away from the dancefloor would make all the difference.

Giving people the choice to decide

One challenge of designing accessible nightlife is that sometimes people’s access needs conflict. Ali explains:

“Some people are like, ‘Oh, I love strobe lights. And then other people are like, ‘I hate strobe lights.’”

In people with conditions like epilepsy, strobe lighting can trigger seizures, so in this situation the priority would clearly be to prioritise people’s safety over personal preferences. But in many cases, the solution to conflicting needs is “giving people lots of options.” Ali explains: “I think accessibility is ultimately all about choice and transparency.”

For Sophia, transparency is crucial. An accessible night-out isn’t only about physical access, but about being given enough information so she can make a reasonable judgment on whether or not to go.

“Clubs, venues and bars should have the accessibility information on their websites, even if they don’t have good access. For example, there’s a place called Scala, and although it’s an inaccessible building, they say how many steps there are to get into the building, so it leaves it up to the person to decide whether they can access it or not. Whereas if you have no information, it just leaves you feeling really deflated.”

Providing detailed accessibility information ahead of an event means, for example, describing whether there’s full wheelchair access, seating, or if the venue is near step-free local transport. But the more detail, the better: ideally they should also say, for example, how many steps there are, give measurements of door widths, and provide photos or videos of the inside and outside of the venue (yes, even the toilets).

Being open and willing to help

For Katouche, being transparent and giving people choice can go a long way in compensating for a lack of physical access:

“There’s accessible versus being accommodating. Some places may not have the logistics or the structure, but they’re open, they have a willingness to want everybody to enjoy it.”

She explains:

“I’ve been to venues where they’ve been happy to carry my mobility scooter down the stairs and make sure I have somewhere to sit when I’m inside, or they find me a table.”

Ali agrees that the most important thing is “just being honest” about how accessible a venue or event really is. For example, she’s hosting a party this weekend in the warehouse she lives in:

“It’s up three flights of stairs, it’s an old factory space,” she says. “So we’ve made it clear it’s on the third floor so it’s not step free access, but you can email us, and if you’ve got mates who want to carry you up or down the stairs, and we can do that in a safe way, then let’s try.”

Pleasure and politics

Jane Madden recently completed an MA in Disability Studies at the University of Leeds. Her research, titled “Campaigning for a Good Fuck: The Fight for Inclusive Nightlife Spaces”, argues that inclusive nightlife is not just about access to dancing but about disabled people’s sexual citizenship: having opportunities for flirting, romance and sex. She explains that “disabled sexuality is very much neglected”, even within the disability rights movement, which so often focuses on education and employment.

When Tatum moved to London aged 18 they were finally able to explore their queerness:

“I wanted to snog a woman on the dance floor! Clubbing gives you that experience where you can try things out.”

Meanwhile, Ali believes nightlife can build empathy. When you meet different people and share an experience on the dancefloor, you “walk back into your different lives and take that with you.” At a recent event she hosted, she invited her trans friends to do a performance in which they had “these really big protest signs”:

“What I loved the most was seeing all these amazing straight men on the dancefloor, who afterwards were saying how beautiful they were and asking questions about trans rights.”

“Nightlife is political,” says Tatum:

“I think the powers that be would rather us stay home, spend money online and not talk to each other. But dance and music are part of resistance because we’re expressing ourselves and we’re sharing joy, but also we’re talking. We’re chatting about what’s going on in the world. We’re organising.”

The nightlife industry is struggling

I’m torn between fantasy and reality. During my conversations with contributors, I get lost in dreams of an accessible dancefloor. But then I go on Instagram, come across a night I want to go to, and I’m reminded: nightlife is still overwhelmingly inaccessible, and access isn’t top priority in an industry which is already on its knees.

Over the last five years, more than a third of the UK’s nightclubs have closed. We’re all familiar with some likely explanations: the cost of living crisis, people’s lifestyles changing after Covid, and Gen-Z drinking less than previous generations.

Queer venues, especially, are struggling, and more than half of London’s LGBTQ+ venues have closed since 2006. This is bad news for disabled people, not only because we’re more likely to identify as LGBTQ+, but also because many of us find queer spaces to be more accessible anyway.

“When I go into straight spaces, it’s shocking how much more ableism I experience,” says Tatum. Sophia agrees that when it comes to accessibility, the queer community “is making much more progress.”

Why we need the dancefloor

It’s interesting that queer spaces should feel more accessible when they have more than their fair share of physical barriers: usually they happen on small budgets or at grassroots level, with a DIY spirit. They’re in basements or warehouses, if they even find a permanent home at all; often they operate as “pop-ups”, hopping from venue to venue. None of these things are exactly a recipe for physical accessibility.

So is it an attitudes thing?

Certainly in my experience, within the queer community there’s less shame in straying from expectations, more of an open, honest conversation about our bodies or limitations, and a willingness to do things differently. But perhaps it’s also a history of persecution which has taught us to embrace joy—to know how much these moments matter.

Clubbing offers us a kind of transcendence, says Tatum:

“You’re just being with the music and looking into your friend’s eyes and smiling and feeling that euphoria.”

But to get to that feeling, we can’t only scheme. At some point, we have to take the leap. We have to go out, onto that inaccessible dancefloor, knowing there will be barriers and people who stare, but trusting that it will be worth it. That the joy will outweigh the pain.

Because dancing with strangers in the messy, real world is always more fulfilling than polishing a dream.

“Right,” says Sophia, “So when are we going dancing?”

I’m ready when you are,

Celestine

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Thank you…

Photos by Lydia Garnett and Solar KBD, via Ali Wagner.

A huge thank you to Ali for sharing so much with me about accessible nightlife and Dancefloor Intimacy. Thanks so much also to Katouche, Sophia and Tatum for being so open, wise, and honest with me about your experiences of going on nights out. Thank you to Jane Madden for sharing your interesting research.

Thank you to for editing.

Dear every body,

Welcome back! Thank you so much for reading my first essay, “When you stammer with someone”, over the last two weeks. I’m amazed that lots of you have already subscribed, and the article even got shout-outs in several newsletters I’ve been a long-time fan of: Reframing Disability, Disability Debrief, and Disability News Digest! None of my writing is behind a paywall, so I really appreciate you subscribing and spreading the word.

Today we’re talking about the intersection of disability and queerness.

As I spend these dark October evenings at my desk, in an excited frenzy of writing my next few newsletters and interviewing contributors, I want to share with you an essay I wrote a few months back.

Why are so many LGBTQ+ people disabled? is a question I’ve been thinking about, in one way or another, since early childhood.

When I was four, 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 and queer 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, have I felt so much shame in talking about this intersection?

In this edition of Body Babble, we’ll cover:

• My early childhood memories of shame

• Homophobia and ableism in the UK in the 2000’s

• Rates of disability among LGBTQ+ people

• Mental and physical health effects of homo-/transphobia

• When queerness was pathologised and the legacy of AIDS

• Why disabled people might be more likely to identify as LGBTQ+

• The link between neurodiversity and gender diversity

• Moving through shame with dancing!

  

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.

Playground insults

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.

Being seen

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 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 people 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 physical health effects of homo-/transphobia

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.”

Neurodiversity, gender diversity

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.

Dancing off the shame

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.

Keep moving

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

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Thank you…

Thank you to Peter Torres Fremlin for editing this essay and first publishing it on Disability Debrief, and for letting me re-publish it here on Body Babble.

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 all make it into the final essay. Thank you to the UK LGBTQ+ disabled charity ParaPride, and in particular Daniele Lul.

Thank you to for editing this re-published version.

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Dear every body,

Welcome to the first edition of Body Babble!

Today we’re talking about stammering. Stammering, or stuttering, as it’s known more commonly in the U.S, is a speech “disorder” which creates a difference in the way people speak. According to STAMMA, the UK’s largest stammer charity, people who stammer repeat sounds or words (“My name is J-J-J-John”), stretch or prolong sounds (“Can you tell me a ssssstory?”), or have a silent block where a word gets stuck (“----Can I have…”).

I don’t have a stammer myself and until recently, I can’t say I’d spent any time thinking about stammering (at least not since I watched The King’s Speech back in 2010).

But in late July, I found myself at a poetry night in a bookshop in South-East London. I arrived slightly early, and the poets were still sound-testing the mics, so to pass the time I browsed the books, bought myself a beer, and sat down next to a friendly young guy with red hair who introduced himself as Patrick.

We got chatting and quickly found common ground. We talked about our favourite poets, about Frank O’Hara. We talked about how—and what a coincidence—we were both involved in the small world of disability arts. Patrick mentioned in passing that he’d written a book—about stammering. “Stammering?” I said, bouncing on the word. Did Patrick have a stammer? If so, I hadn’t noticed.

And then the poets performed; the audience whooped, clapped and whistled. Afterwards, at dusk, the air still warm, we lingered on the street outside, talking. At some point Patrick’s stammer revealed itself. But it was getting late, and before long we exchanged Instagrams and goodbyes.

The next morning, I woke to a DM from Patrick with a link to a Frank O’Hara poem. “And,” he added, “another thought”: did I want to join him on Saturday at Stammering Pride?

In this edition of Body Babble, we’ll cover:

• Stammering Pride

• Songs that stammer (feat. Poker Face, Changes, Lola, My Generation)!

• What it means to have a “covert” stammer

• The medical model vs. social model approaches to stammering

• How stammering can be a source of creativity

• How we can better support people who stammer

• What stammering can teach us about connection and relationships

It’s a Saturday in August and the sun is shining in Victoria Park, East London. Couples clutch their coffees and cockapoos, cyclists dart past, and twenty of us are marching down the broadwalk, waving stripey blue flags and chanting: Stammering Priide, Stammering Priiiide, Stammering Priiiiiide!

We’re getting louder, gaining confidence as we march, emboldened by our strength in numbers and brazen to the confusion on strangers’ faces. At some point Patrick suggests we add a stammer to our chant. We find a rhythm. Sta-sta-stammering P-P-Pride! Sta-Sta-Stammering P-P-PRIDE! STA-STA-STAMMERING P-P-PRIDE!

Passers-by are looking at us. They’re looking, I suppose, at the size of our group, or at our signs and placards, or at the blue flags we’re waving (What country is that? Has the LGBTQ+ Pride flag been updated again?), or maybe, and this is the most likely explanation, because Patrick is blasting music out of a sound-system.

We're shuffling through a playlist of “stammering songs”. There’s Lola by the Kinks. Changes by David Bowie. Lady Gaga’s Poker Face. But it’s My Generation by The Who that takes the crown as Patrick’s favourite. “It’s a really harsh stammer!” he shouts to me over the chorus (People try to p-put us d-down), “It’s the most realistic. It’s very powerful.”

We sit down at a group of picnic benches, in a clearing between the trees. Our tables are heaving with children’s party food —doughnuts, crisps, fizzy drinks and chocolate— as if pride would be impossible on an empty stomach. Some people have come with placards, which they’ve propped against a nearby tree: EMBRACE THE STAMMER, one reads, with hand-drawn hearts. Most of us are wearing shades of blue: teal and ultramarine are the colours of the Stammering Pride flag.

We chit-chat, talk about how far we’ve travelled, why we’re here. I confess, somewhat sheepishly, that I don’t have a stammer; that I’m just here to learn and support. Between bites of one explosive jam doughnut, I wipe the sugar from my lips and muster the courage to ask questions.

Mudassir is from Pakistan, but moved to the UK two years to complete a post-doc. Gina, from Bristol, is a writer; her biography of stammering musician Scatman John will be published in 2026 by Bloomsbury. Josh is a medical doctor, specialising in end-of-life care.

But everyone has come to Stammering Pride for similar reasons.

“I don't realise how much tension I'm under until I come here,” says Gina.

Mudassir is nodding. “It’s like, ‘Oh,’” he says with a deep breath, “You are relaxed.”

Facts about stammering

For Josh, Gina and Mudassir, moving towards pride in their stammer —or at least acceptance— has not been linear, but a lifelong journey.

Stammering usually starts in early childhood, and as many as 8% of children stammer. But although stammering affects equal numbers of boys and girls, girls are more likely to stop stammering. In adulthood, 75% of people who stammer are men.

A common misconception is that stammering is caused by nerves or anxiety. In reality, while anxiety can exacerbate someone’s stammer, research has shown that stammering has a genetic component (60% of people who stammer have a family member who also stammers) and that there’s a slight difference in how the brain is wired in people who stammer.

While Mudassir agrees that “If you have more fear, you’ll stammer more”, he insists that anxiety alone isn’t the cause of stammering. For example, at five years old: “I have no fear but I stammer.”

Stammering at school

In childhood, Mudassir, Josh and Gina experienced a pervasive shame. Mudassir remembers school as a place where “you feel bullying, too much bullying, I can't speak in the class because of the bullying.” Being asked to read out loud in class would make him sweat and shake with anxiety. “It was so hard,” he says, “So hard.”

“I was supposed to go to Oxford to read English,” says Gina, “But then I skipped every single class that had anything to do with reading out loud or doing any presentation. It was like ssself-sabotage.”

Josh is nodding. “I had a covert s-stammer at school,” he says. “I got good grades, I got four A-stars, I was in the sports teams, I did music. I was a successful boy, right? I didn't want to break that.”

What does it mean to have a covert stammer?

“It's c-c-characterised by avoidance,” says Josh. “Avoidance of words, of situations, of sounds or anything that is going to trip you up.”

It sounds a bit like masking, I say. Like when autistic people try to pass as neurotypical?

“Yeah, that’s probably the way of describing it that's easiest for other people to understand,” says Gina.

Josh agrees: “You’re trying to pass as fluent.”

During our conversation, Mudassir, Josh and Gina frequently refer to “fluency”, or being “fluent”—words I’d previously only heard applied to learning foreign languages. I soon learn that these are used as shorthand for speaking without stammering, or for people who don’t stammer.

Hiding who you are

Substituting words and going to great lengths to avoid stammering can have profound consequences on a person’s relationships, professional life and sense of identity. Josh explains:

“At the beginning it might just be a few little words, but then the more there’s a fear of the word, the more there’s a fear of making the mistake. […] And so you end up in a position where you go to order a sandwich from a café and you're worried about saying the word “ham”. And so rather than order the ham sandwich, you order the cheese sandwich. And that bubbles into every relationship, because now you're not being authentic. You're not saying what you want to say. You're saying what you can say and what you can get away with saying.”

Gina agrees: “I used to think I'm a shy person, but I don't know if that's true anymore. It's like, did that come first or is it just a result of all the hiding?”

Unfortunately, some words simply can’t be substituted, and these are often the words that stammerers struggle the most with.

“You can't substitute your own name,” says Josh. “You can try! But you look like a complete maniac. Or you look like you actually f-f-forgot your name. It's like, “Oh, you didn't know your name.” And it's like, “No, I have a stammer, man.”

Before Pride

Though speech and language therapy can help people manage their stammer, there is no known cure for stammering. Despite this, most people seem at some point to have fallen down a medical pathway.

While some people find speech or language therapy to be helpful, others find the way it often focuses on self-improvement to be harmful. Meanwhile, online, Gina says “there's a lot of people on YouTube saying they have a cure.”

Mudassir has seen those videos. “I think there are some techniques,” he says. “Like ‘prolongation’ and to take a deep breath and then make relax. But it is a long journey.”

Laura, originally from Romania, is a user experience researcher. She spent years in stammering support groups, but found even those “quite medical” and “oppressive” in their approach:

“They were focused on fixing your stammer and changing yourself. But when the pandemic came and it was something you don’t have control over, I realised that, okay, those stammering groups were t-t-t-taking a lot of time for me because I had to put a lot of work into controlling my stutter. And they were very much a losing game because I was still s-stuttering at the end of the day.”

Discovering the social model

Naheem, a healthcare consultant from London, was so determined to “get rid” of his stammer, he completed a whole neuroscience PhD on the topic:

“My whole thing was using electrical brain s-s-s-stimulation to try and enhance the areas of the brain involved in speech so that people who stammer would stammer less,” he says.

But after finishing his PhD, Naheem’s “view started to change”. He’d started his own stammering support group in London, had become more involved with the stammering community and had even joined the board for STAMMA UK. Crucially, he’d learned about the social model of disability: “It's not the stammer that's the problem, it's the effect it has on the quality of life and the choices a person makes in their life.”

For Laura, shifting from a medical to a social model view of her stammer was transformative. It allowed her to stop taking on so much responsibility and to surrender the self-blame:

“[Previously] if I had a negative encounter with someone, it was my fault because I didn't control my stammer. It was not perhaps because that other person was ableist and didn't give me enough time and interrupted me mid-sentence.”

Seeing stammering as a disability

Kristel is a speech therapist who’s flown to Stammering Pride from New York City. Though she spends her days supporting other people to accept or embrace the way they speak, she admits it took her a long time to feel pride in her own stammer.

Kristel also has cerebral palsy, and she witnessed a lot of ableism within the stammering community:

“It used to hurt my heart the way the stammering community was so against the thought of being a part of the disability community. It felt like they didn't want to be a part of that group. ‘That's gross’: that's the feeling I got.”

But she says that in the last decade the stammering community has begun to position itself within the wider disability movement: “All of a sudden everyone started talking about disability.”

“I think people realised they could use [the label ‘disabled’] at work,” says Patrick, explaining that identifying as disabled makes it easier for people who stammer to ask for reasonable adjustments:

“Often people who stammer really don't like if you get five minutes for an interview. That's really difficult and puts lots of pressure on your speech—it's unfair. So suddenly we were relying on the disability equality laws to try and change that.”

Josh learnt this through trial and error:

“I did some professional exams recently and I failed the first time and then I did them again and I passed. And the first time, having made all this peace with stammering, I decided not to identify as disabled: I didn't get any extra time. But the next time, I applied for extra time: I said I had a disability. And I found identifying as disabled was just that step of acceptance.”

Gina describes herself as disabled because it “offers protection against discrimination because of the way you s-s-speak.” She explains: “You may not identify with the word disability, but […] it offers protection against what is an unfair and ableist world.”

Giving people more time

We live in a world of TikTok and TED talks, which rewards hyper-fluent, fast-paced speech. Laura explains:

“Unfortunately, time is money in this current social economic environment. People want things to be as efficient and timely as possible. If we can do sssomething in the short amount of time, that's a win. But that doesn't work within the stammering world.”

If people are disabled by their stammer only because we live in a society that rewards hyper-fluency, what we can do to remove barriers and better support people who stammer?

“So I think the first thing is don't finish sentences,” says Patrick.

“Often people feel this need to rush in and finish a sentence. But I think just be relaxed when somebody stammers and not respond negatively. And think about the conversational landscape, and whether things are really time-pressured or not.”

Kristel agrees: “Just be patient and listen to their message and not worry so much about the fact that they're stuttering. Some people just need a little more time.”

Laura wants people to understand that stammering is more common than we think—and a natural variation on the vast spectrum of human speech:

“Just hang out with us. Just come and hang ouuut. For example, let's say that in this s-s-sssituation you might be hearing more stammering, so stammering becomes more normalised in terms of the way it sounds. You meet different people who you might not have clocked as having a stammer. […] We expect people to speak fluently by default, but many people don't.”

Kristel agrees: “I think the general population need to understand how stuttering is just a way that some people talk.”

In his book Words Fail Us, Jonty Claypole argues that stammering should be re-framed not as a disorder but as a difference—similar to how the neurodiversity movement has re-positioned autism, ADHD, Tourette’s, etc.

This reframing also helps to organise the community and to create a sense of collective identity: a culture with its own distinct art, inside jokes and shared experiences.

Stammering culture

Patrick is taking books and magazines out of his tote bag and laying them out on the grass. An eighteen-year-old girl has just arrived, her mother in tow. It’s the girl’s first time at Stammering Pride, and Patrick wants her to discover the rich culture that can come out of this community.

Dysfluent is an independent magazine which explores the lived experience of stammering. Started by designer Conor Foran, the magazine is bold and beautifully designed, experimenting with layout, the repetition of words, fonts and formatting to visually represent the experience of stammering on the page.

At our feet is also The Clearing, a book (and album) by artist JJJJJerome Ellis, an artist who spells his first name with five J’s “because the word I stutter on most frequently is my name.” Inside the book, the formatting is deliberately disruptive: letters and syllables look like they’re falling off the page, almost as if they got displaced by a gust of wind.

I’m intrigued by Claypole’s conviction in Words Fail Us that the experience of stammering leads people to “unique forms of creativity”:

“The language of stuttering is defined by its ornate and sophisticated synonyms as much as its blockages”.

Certainly, Patrick, Josh and Naheem seem to have managed to marry their own experience of stammering with their creativity. They share a love of poetry, and sometimes perform their own work at open mic nights. Inevitably, their stammers become part of their delivery, but what’s perhaps more surprising is the intimacy this can create with the audience:

Josh explains:

“There's this sort of amazing potential in the moment of the block, like anything could happen. And then when the block's over, there's a completion. You get this series of ruptures, of openings, of what could be, then a resolution—in a way that you wouldn't get if you just listened to someone [who didn’t stammer].

Patrick continues:

“That's why JJJJJerome called his book The Clearing. The idea is that when you stammer with someone, you step into this clearing. It’s a kind of mood, for a moment, that opens up.”

Relationships take time

On the train home from Victoria Park, I realise that stepping into that clearing has opened up something for me too. As a perfectionist, and as someone who’s felt plenty of shame around my own disability, I feel moved and quietly changed by my time at Stammering Pride. The people I met taught me that when you allow yourself—when you’re brave enough—to be truly seen, you’re often rewarded: with authenticity, connection and friends who give each other the time. I suppose this is a lesson for us all.

Patrick, Josh and Naheem are soon going to be moving in together. “It’s a very stammering-friendly flat,” Patrick laughs. They met years ago at stammering events but have, until now, never all lived in the same city at the same time.

They know each other “through stammering”, of course, but also through shared experiences, through patience, laughter and mutual vulnerability, and through showing up, year after year, at the conference or picnic in the park.

Our culture might reward hyper-fluency, but in relationships, there’s no x2 speed; no skip; no shortcut. It takes a while to know each other.

We get there, with time.

See you again soon?

Celestine

Thank you…

A huge thank you to everyone who welcomed me at Stammering Pride. I’m especially grateful to Patrick for inviting me into this world, and to Naheem, Josh, Mudassir, Kristel, Laura, Gina, Joe and Marilena for being so open about their experiences of, and in, stammering. Thank you to Patrick Campbell for proofreading and advice, and for editing.

I also learnt from Dysfluent Magazine ed. by Conor Foran, Words Fail Us by Jonty Claypole, Stammering Pride and Prejudice: Difference Not Defect, ed. by Campbell, Constantino and Simpson, and STAMMA.

Welcome to Body Babble, the newsletter where crip, queer & misfit bodies talk back.

If you don’t know me already, I’m Celestine Fraser, the author.

I’ve been writing and making films about health, disability and identity for the last 9+ years. In that time, I’ve worked with the BBC, BFI, VICE and lots of charities, organisations and businesses. My films have screened at festivals around the world and I’ve won awards for my work in media.

But lately I’ve been craving something different.

I want to publish more frequently, and to spend less time pitching to execs, funders and gatekeepers. I want to write with less fear, more freedom and more room for experimentation. And I want to build more of a relationship with my readers — a conversation that goes further than fire emojis (although please do keep sending me those, too).

My first article is about Stammering Pride, a social movement by people who stammer, and it will be published very soon. And my brain has been buzzing with new ideas, so I have lots of articles planned for the coming months!

If you haven’t already, please subscribe, so you receive my newsletters directly in your inbox. You can also access everything I publish on the Substack website or app.

Say hello on email or Instagram — don’t be shy! I’d love to know who you are and why you’re here. And if you enjoy the newsletter, feel free to share it with others to help me find new readers.

I’m honoured you’re joining me on this weird, wonderful journey into Body Babble!

Speak soon,

Celestine x