Dear every body,

I hope you’ve had a good summer!

I took some time off last month and for the first time in my adult life, switched my phone off for an entire week (although I did write another essay in that time!). I went to Italy, where it was swelteringly hot and I spent most of my time horizontal and in front of the fan, or on the beach with a crema al caffé. My beach read was (maybe unsurprisingly) a four-hundred page hardback about disability history. Its sandy pages, warped by salt water, tell the tale of how much I enjoyed it…

In today’s newsletter, I’m honoured to be sharing a conversation with Professor David Turner, one of the UK’s leading disability historians. He’s a professor at Swansea University and has published extensively, particularly on disability in Eighteenth-Century England, and on disabled people during the Industrial Revolution.

Most recently, he published Disability: A History of Resistance. Published by Bodley Head/ Penguin, the book is an epic and gripping history of disabled people in Britain over the last five hundred years, and has been critically acclaimed.

As a slew of ableist and misogynistic articles have been published in the UK in recent weeks, dangerously portraying mobility aids as a fashion accessory and disability as a modern trend, Turner’s writing feels especially urgent. His book’s central argument is that disabled people have always existed, and that even before a 20th century disability movement, our community has continually resisted and fought for our rights.

I’ll hand over to Professor David Turner to explain…

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

* Popular misconceptions about disability history

* How has the language of disability changed over time?

* The social model as a turning point

* The long history of accusing disabled people of “faking it”

What led you to write this book?

DT: One of the inspirations was talking to my friends in the disability movement who were complaining that the resources they had were often quite inaccessible because they were written in an academic way.

So the idea was to try and bring all this knowledge and interest to a wider audience, and to rethink the way we approach disability rights and disabled people’s activism as something which is traceable a lot earlier in time than we often think.

There’s such a long disability history and I started five hundred years ago, but I could have started even earlier.

Why do you think disability is so often siloed or considered “niche” as a topic?

DT: I think it’s several things. There’s an assumption that disabled people have never done anything, or that everything that’s happened around disability has been about care or welfare – things being done to or for disabled people rather than disabled people doing anything themselves.

I think there’s also a myth that disability is somehow hidden in history. But there’s actually disability everywhere once you start reading things from the past. I don’t like the term hidden history very much because in reality, I think it’s more a suppressed history or a forgotten history – something which actually reflects deliberate choices about whose histories matter, rather than something that’s hidden in obscurity or archived somewhere that requires specialist skills to find it.

Another thing is to do with difficulties disabled people have in being able to access history, whether that’s through being able to access archives, lack of representation in academia, or in publishing more generally. That has held back the study of disability.

What are common misconceptions about disability history?

DT: One misconception I find a lot with my students is that people in the past didn’t understand disability, or that we now have a proper understanding of what disability is, and of disabled people’s lives.

Firstly, I think it’s an unduly optimistic view of the present, but it’s also a really limited view of the past, because people living five hundred years ago would have been all too aware of disability. They would have seen disabled people in their day-to-day lives.

They may have been more likely to live with some kind of impairment because of things you take for granted in medicine today. If you break an arm or a leg, most people don’t assume that this will lead to permanent disability unless it’s a really complex fracture. We expect these things to cause temporary incapacity and then get better. But in the past fractures mostly wouldn’t heal properly and so would’ve left some kind of lasting functional impairment.

People had very different ideas about disability, but it doesn’t mean that they didn’t understand it.

So in the past, were there a lot more disabled people?

DT: I think we have to be a little bit careful in that it’s only recently that we’ve got to count how many disabled people there are, and that also raises questions about what is disability. So we can’t say for sure that there were more disabled people in the past than today, where we have nearly 17 million disabled people in Britain.

But there are moments in history where people are talking about being very struck by the number of disabled people they see. Disability was not some unknown thing or hidden away, it was part of mainstream society.

You write that to research your book, you had to look beyond sources that used the word disabled, because that’s actually quite a modern word.

DT: Yes, that’s always a big problem. The word disability, in the way we understand it today, is not very widely used before the 20th century.

The word disabled was used in previous times, but often in quite specific ways. The first time you see the word being used in law is in relation to pensions for disabled soldiers and sailors. So that associates being disabled with a certain kind of experience: a very masculine experience, often an honorific experience of service. And so it meant that other people with impairments might be excluded from the category of disabled by nature of their social status or gender or other factors.

By the time we get to the 19th century, the term disabled is used more widely in terms of inability to do paid work. So industrialisation has a big role to play in terms of defining people in terms of their earning capabilities. But even so, people with physical sensory and intellectual impairments continue to work through this time.

And then the First World War is another key moment in shaping modern ideas around disability, particularly as a category of state welfare. So disability is a historical concept in the sense that it emerges at a particular time and place.

Is it fair to call people from the past disabled?

DT: One ethical dilemma we face is how do we talk about people in the past who wouldn't have used that term to describe themselves?

I think we have to be respectful of the fact that not all disabled people in history would have identified as 'disabled' as we understand it, but at the same time we can't fully avoid using our own definitions of disability when talking about the past.

In academic writing we often put modern terms we’re using out of context in quotation marks. But I decided not to do that when I talk about disabled people in the past because it implies that they weren’t really disabled.

So that’s something I had to grapple with. I wanted to convey that the term has changed over time whilst at the same time writing about people whose experiences would resonate with our own understanding of disability today.

How has language around disability changed over time?

DT: I think this is the other side of the ethical dilemma around language: what do we do with the really problematic language that’s in so many historical descriptions of disabled people?

I’ve seen some writing completely avoid engaging with that language altogether, on the grounds that it is so problematic now that even quoting something causes harm. And I can see the argument for that.

But at the same time, I think these are words which disabled people in the past used to talk about their own experiences. For example, in the book I talk about William Dodd, who campaigned for factory reform in the 19th century, particularly around getting better compensation for people who were injured or disabled through their work. He refers to himself as the “factory cripple”, and that was a very deliberate choice to show that he came from that world and that he had an affinity with people in that situation.

Obviously the c-word is really problematic today and it’s not something we should be using in our modern discussion of disability. But it was a very powerful word for that particular person in that particular context.

How did the social model lead to a modern disability movement?

DT: A more radical disability movement emerged in Britain and elsewhere in the 1970s, with a crossing of ideas from different radical political movements, like the South African anti-apartheid movement. The social model is named and comes together in the 1980s, but it has deep historical roots as well.

We start to think about disability in terms of social barriers and that somebody’s disabled by the society they live in. It’s really interesting to find some early examples of that back in the Victorian era. There were some blind political activists in the middle of the 19th century who recognised that blind people’s position in society was very influenced by the fact that so much of Victorian society was built for people who were sighted.

But I think the social model’s real importance was allowing disabled people with different impairments to come together in a common cause. It really enabled the modern focus on disability rights to emerge. It was a call to action politically to try and dismantle some of these harmful attitudes and barriers.

The social model isn’t perfect by any means. It’s been criticised for ignoring the experience of impairments and that’s fair enough, I think. But at the same time, without the social model, we wouldn’t have things like the 1995 Disability Discrimination Act.

In the last couple of decades in Britain, I’ve been aware of a pervasive media phenomenon around the idea of disabled people “faking it.” When did this culture of suspicion start?

DT: Unfortunately, it does have a very long history. It starts to come to prominence around the end of the 16th Century, which is a time when we’re moving towards the first system of state welfare in England and Wales, under the Poor Law. People are recognising the need for communities to have some kind of system of financial support to help people who aren’t able to support themselves, and at the same time this nasty stereotyping of “fake” beggars starts to emerge. Disabled people are really prominent in this discussion of “faking.”

At the end of this period, you see these “guidebooks” for visitors to London, which don’t give you the sites, but are all about how to interpret people you might meet on the street. They show multiple types of disabled beggar, with bizarre names like clapperdudgeons and Abraham-men. There’s a whole literary genre about “fake” disability.

But it is not just about people just reading this stuff and being entertained by it, it seems to filter into people’s attitudes. In late 16th century London, there’s a rise in people being arrested for faking disability in relation to vagrancy, and they’re imprisoned or publicly humiliated. You find people in the provinces reflecting these attitudes, voicing their suspicion about people in their community. And it also affects disabled people who are trying to get support.

People who feel they have a genuine case for getting some support from their community are denied that support because their neighbours accuse them of faking their impairments. This is the thing about the faking disability theme: it impacts on all disabled people potentially because it creates this climate of suspicion.

Why do we need to be learning about disability history today?

DT: I think we are in a moment where there are so many harmful portrayals of disabled people in the media, all of which have history. And I think we need something to counter that.

Including disabled people in the story of Britain, which is what the book grandly tries to do, is about showing that disabled people are always there and that disability isn’t some kind of modern trend, which you see in some media portrayals of neurodivergence, or for example that notorious article about a month ago about “Why are so many young women are using walking sticks?” as if people are just seeing this on TikTok and deciding they’re disabled. That’s just rubbish.

Disabled people have always existed, have always been part of history and have always had to fight for everything they’ve got. Disability rights aren’t just the product of our society becoming more enlightened or more understanding of disability, but because disabled people actually fought for those rights and highlighted discrimination.

Some of the most shocking stuff I’ve found in researching this book is not the stuff from the 16th century (harrowing as some of that is), but stuff from the 1980s. I read a newspaper account of a group of learning disabled people who were thrown out of the pub because they were “spoiling” the ambiance, and that’s just horrible and for me, within living memory.

So it’s really, really important to know this stuff. The more we know, the more we can push back against the really difficult things which disabled people are facing today.

Buy Disability: A History of Resistance

Follow Professor David Turner on LinkedIn

Thank you…

A huge thank you to Professor David Turner for writing such an essential book, and for sharing this conversation with me and my readers.

Thank you to Theodore Fraser for essential editing.

Dear every body,

At the end of last year, I received a lovely message on LinkedIn from a Deaf writer in the U.S, who introduced herself as Carolyn Girard. She told me she’d recently discovered Body Babble and would be keen to write an essay about her experience at Gallaudet University, the world’s only Deaf university.

Immediately I was intrigued. I’d been aware of Gallaudet for a number of years; I’d read about the university in Oliver Sacks’ Hearing Voices and in Carol Padden and Tom Humphries’ Inside Deaf Culture, and I’d watched the Netflix reality show Deaf U and the 2025 documentary Deaf President Now! But as a Brit and a hearing person, I’d never actually met anyone who studied there.

So after months of collaboration and Zoom calls, I’m excited to hand over to Carolyn, who is my first guest writer, with this brilliant essay about her years at Gallaudet. Please join me in welcoming Carolyn to Body Babble!

Body Babble is free to read, for everyone.

Independently publishing original disabled stories on absolutely no budget is a labour of love. Please help me continue this work by:

* subscribing

* sharing this essay with someone else

* considering a paid subscription

Thank you so much!

Celestine x

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

* Carolyn’s experience growing up Deaf

* Transferring to Gallaudet University

* Learning ASL and discovering DeafSpace

* The thriving Deaf scene in Washington D.C

* Surviving a sexual assault on campus

Thanks for reading Body Babble! Subscribe for free to receive new posts and support my work.

Content warning: Please be aware that this essay includes discussion of sexual assault, being a survivor and suicidal ideation.

A hearing world

They found out I was Deaf at five months old. Growing up, I don’t remember a time when I didn’t wear hearing aids. My grandma told me I’d hide them under the couch as a toddler. But I don’t remember at what point I realized they were crucial to me understanding the world around me.

My nose was usually in a book, and if I wasn’t reading I was playing the piano or on my Gameboy Advance. Those things didn’t require me to work so hard to understand other people’s speech.

In the hearing world, and by the standards of oralism, I was a poster child for success. I played competitive piano, danced, got mostly A’s in school, spoke with a clear voice, and had a few friends.

But what teachers and people around me didn’t realize was that it never felt like I was fully there. Even with hearing aids, whatever memories I had of myself and others were only pieces or fragments of the whole picture. I was in my own bubble.

Finding the Deaf community

At the age of seventeen, I spent two years at a community college in Michigan studying American Sign Language interpretation. But when the program I was supposed to graduate from suddenly shut down, I was left with wasted credits. I was given two options: start over at a new four year university in-state (even though it likely wouldn’t have an ASL program), or transfer to Gallaudet University, a Deaf university in Washington DC.

“You need to find the Deaf community,” said my American Sign Language (ASL) professor, a Deaf man who had been my trusted mentor for two years.

He was right: I’d been deprived of Deaf culture, and ASL classes weren’t enough to fill that hole. Heeding my professor’s advice, I packed up my disappointment and transferred to the world’s only Deaf university.

No other place like this in the world

When I arrived at night in a taxi, the first thing I saw was a huge slogan which read “There’s no other place like this in the world.” The driver dropped me off and left me to wander until campus police found me, lost with my suitcase.

“I DEAF”, I signed clumsily to the officer, “J-U-M-P-S-T-A-R-T?”. He smiled and lead me to my dorm. I had arrived at Gallaudet before the beginning of term for JumpStart, an intensive summer school. I would spend the month of July learning ASL and Deaf culture and history, while touring Washington D.C with a group of people like me – mainstreamed Deaf and hard-of-hearing individuals who had been discovered by Gallaudet recruiters across the country.

Deaf ASL professors and college peer mentors opened our eyes to the Deaf world. We attended ASL classes from 9am to 5pm, ate together for dinner and spent our evenings running rampant on the empty campus or finding the cheapest dumplings on H street at night.

By the end of the summer, our group of twenty-five freshly transplanted Deaf students were all signing full conversations to each other, excited for the semester ahead.

Accessibility was standard

At the beginning of the Fall semester, the campus became alive with activity. Students and families carted their entire lives into the dorms. Classes started and we realised something significant: there were ASL interpreters everywhere on campus. CART live captions and subtitles were on every screen.

The campus was built according to the architectural principle of DeafSpace: buildings were brightly lit, with hallways wide enough for wheelchairs and for groups of people to sign with ease. Glass elevators, walls and open concepts provided easy visual access for signing.

Conversations were led with patience. People didn’t get annoyed by sounds of chewing or breathing (“Your breathing is so loud”), or having to repeat themselves. Accessibility was a standard, not a burden.

I realised that the life that I had been living in the hearing world was that of a ghost.

The planet was at our fingertips

At Gallaudet, I met Deaf, DeafBlind, neurodivergent and disabled people from around the world. I learned about the 300+ global sign languages. I became friends with exchange students who taught me Japanese Sign, Palestinian Sign and Mexican Sign, and I even learnt versions of Native American Sign (Hand Talk). The most interesting people in the world were on campus. The planet was at our fingertips.

The Deaf world is small yet huge. Our community has its own celebrities, actors, linguists, artists, lawyers, medics and political leaders. I met people with life experiences that should be in books – like the DeafBlind woman who has a masters in social work and could recall what life felt like before she had access to language.

Many of my professors were revered across the country for their expertise. For example, Carolyn McCaskill, who graduated from the first integrated Deaf school in Alabama in 1968 and wrote groundbreaking work about American Deaf history. People the hearing world would overlook on the street were legends in the Deaf community.

The parties are CHAMP!

The parties at Gallaudet were filthy and wild. Each weekend, our Snapchat and Instagram feeds flooded with party locations on and off campus. Packs of students prowled the campus in skimpy crop tops and short skirts, and topless boys on skateboards with huge stereos patrolled from building to building for open dorm rooms. Deaf people like to feel and hear their music, so booming music would resonate across campus. Luckily, noise complaints are not a concern at this university.

Dorm rooms were packed with bodies spilling alcohol, making out in corners and at times visibly freaking it on where they thought they weren’t seen. If you wanted something harder than alcohol or weed, lean, shrooms and Adderall were always available by delivery if you knew the right people.

Every weekend was like this, and even some weekdays. If you’ve spent 20 years of your life in isolation then you go to college and all of a sudden, you have all these people who are the same age as you and you can understand everyone (and there’s lots of alcohol and drugs), you’re going to party and it’s going to be intense.

City of opportunities

Gallaudet is located in Washington D.C., so the capital is moulded by the Deaf community’s presence. We could go out in public and not be stared at like zoo animals, because the hearing people in D.C. are used to having Deaf people around. The city is full of talented Deaf professionals, and home to Deaf coffee shops, theatre companies, and dance workshops. It was even easy to get Deaf roommates off-campus.

A short walk from campus was the Signing Starbucks on H Street, a Deaf coffee shop that took your order in sign language. Even hearing people had to write on pen and paper or attempt to sign their orders. It was a role reversal that made hearing people nervous but excited, as well as a unique business prospect that enticed the city.

Another Deaf business on H Street was MOZZERIA, a pizzeria where the Gallaudet community would go to celebrate graduations or anniversaries, or to get their first job as a waiter or cook in an accessible environment where they didn’t have to fear getting fired for being deaf.

In Washington D.C., I had more opportunities. Life seemed brighter.

A dark turn

Unfortunately, in my very first semester at Gallaudet, my university experience took a dark turn. I was assaulted in my own dorm by my roommate’s friend while she was gone one weekend. The next day I showed up to class with black bruises on my neck, and I later reported my assault to Title IX (the department that handles university abuse cases) with support from a mandated reporter (my professor). What followed were years of struggle.

I faced scrutiny and judgment from peers who assumed me attention-seeking, and I felt the administration did a poor job at caring for their Title IX survivors. Each semester I would brace myself for the school to send me an eviction letter over my low GPA, where I would repeatedly have to re-open my rape case. I had stacks of papers and letters from professors, therapists, and Title IX advisors to plead with administrators for understanding.

Despite my pleas, I lost my scholarships, Pell Grants, was kicked out of my program, denied internships, work studies, or study abroad opportunities. My low GPA – which I believe was the result of rape – was the only evidence Gallaudet wanted to see.

I developed PTSD, which worsened my undiagnosed ADHD. I thought I had developed some fucked-up form of early Alzheimer’s. I drowned myself in a haze of weed to numb myself to suicidal temptations.

Deaf and disabled

While Gallaudet is very accessible for people who are “just” Deaf, I didn’t feel this accessibility always extended to students with other disabilities – a community known as Deaf+. These were students who were at the bottom of the status quo.

Deaf+ refers to students who are deaf with additional disabilities, or who need other accommodations. For example, wheelchair-users, people who are DeafBlind, Low Vision, neurodivergent or have other medical concerns (like Usher Syndrome) that may have been the cause of their deafness.

Students who needed accommodations – like online class options or extended time for those who frequently needed surgeries – were frequently denied them. Emergency protocols and equipment including stretchers for the DeafBlind and wheelchair-users were inadequate.

Vidism (discrimination against blind people) was rampant.

Blind students had difficulty getting voice interpreters, and coursework was assigned in formats that were inaccessible to screen-readers, leaving many DeafBlind students reliant on sighted friends, tutors or Sighted Support Persons (or SSPs) to help them with homework they should’ve been able to access themselves.

Plans to organise protests were short-lived because students feared repercussions. I remember speculation that “we would be responsible for losing the only Deaf university we have” if we made our concerns known to the public.

In my own rage and desperation, I worked with friends to start the Disabled Students’ Union page on Instagram. I posted anonymous complaints from students, staff and interpreters.

A small but mighty movement, we scared and embarrassed the administration into doing their jobs. Broken doors were fixed, braille labels were added to public spaces, and the disability office began to include disabled students on their board. A tiny step in the right direction gave students a semblance of their voice back.

The only time you feel human

I fought for my degree up until the very last second. Exhausted and left without much dignity, I wanted nothing to do with Gallaudet by the time of my graduation. But as I went back to the hearing world, reality slapped me in the face.

Isolation left me depressed and two years of unemployment made me sick with anxiety. All my Deaf friends moved back to their home states and countries and suddenly, like a spell or maybe a curse, the words “no other place like this in the world” rang in my ears louder than ever.

You can leave Gallaudet, but it will never leave you. I’ll always have an ache for the world that showed me that my quality of life could be better – even if I came out of it severely traumatised.

So when other Deaf people ask me if they should go to Gallaudet, I’m always unsure what to say, except that they’ll be changed forever. My advice would be: advocate for yourself, know what you’re getting into, and be fierce about your own student rights. But most of all, have fun, because those four years might be the only time you feel completely human.

There’s no other place like this in the world.

Buckle up,

– Carolyn

Gallaudet University was approached for comment.

Thank you from Carolyn…

Thank you to Celestine Fraser for taking a chance on a complete stranger halfway across the planet, and for highlighting the stories that you feature in Body Babble. Thank you to friends who body doubled on Zoom to help me out of a deep writer’s block. Thank you readers for taking the time to appreciate the work of disabled artists and writers. Much love!

And a thank you from Celestine…

Thank you Carolyn for reaching out and writing this amazing essay! Thank you also to Ruby Lott-La Vigna, Peter Torres Fremlin, Melissa Pawson and Constantine Fraser for advice, and Theodore Fraser for help with editing.

Hello, and welcome to Body Babble! You can help me keep publishing independent essays and reporting on disability, access and queerness by:

* subscribing

* sharing this post with someone who might like it

* considering a monthly paid subscription

In any case, thank you so much for reading!

Celestine x

Dear every body, today we’re talking about people with non-visible disabilities’ experiences wearing Transport for London’s (TfL)‘Please Offer me a Seat’ badge.

Launched with a trial in 2016 and then officially in 2017, the blue TfL ‘Please Offer Me a Seat’ badge has now been used on public transport by Londoners with non-visible impairments for a decade. The badge can be ordered for free online and according to TfL, 140,000 have been claimed since its launch.

I was born in London and grew up here. As a teenager, I zipped around the city on the Tube, going to parks, free gigs or friends’ homes. But when I became ill at eighteen, my access to the city completely changed.

Between 2013 and 2019, I was able to take the bus to get to university or the cinema, but I only took the Tube a handful of times: the heat, steps, and having to stand or walk long distances made it too difficult. Then, for the four years I was mostly housebound, only going out occasionally and using a wheelchair, the Tube and the sound of its closing doors became a distant dream.

That is, until 2023, when my mobility began to improve and I was eager, like a tourist, to explore the city again. By this point I could walk longer distances, but standing still for more than a few minutes was a challenge.

I have PoTS, a dysfunction of the autonomic nervous system, which makes me prone to fainting with prolonged standing. If I stand still for too long, I get extremely hot, dizzy and faint. In other words, the only way I can travel safely on the Tube is if I always get a seat.

So I ordered a ‘Please Offer Me a Seat’ badge, as well as a Hidden Disabilities Sunflower lanyard, which was rapidly becoming the best-recognised symbol for non-visible disability. And tentatively, I began to take the Tube.

Of course I’d anticipated that I’d be stared at, and often ignored. I knew this because using a wheelchair had commanded its own kind of unwelcome attention. But what surprised me was how, now that my disability was less visible, the attention was of a different sort.

It wasn’t a response to visible difference but rather to its lack. The discrepancy between my appearance and youth and the fact that I was asking for a seat generated in strangers a mix of confusion, suspicion and scorn. I hadn’t felt so self-conscious since I was a teenager.

All from wearing a 4cm piece of plastic!

Thanks for reading Body Babble! Subscribe for free to receive new posts and support my work.

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

* People’s experiences wearing the ‘Please Offer Me a Seat’ badge

* The ‘Baby on Board’ pregnancy badge

* Disabled people “faking it”

* The design of the badge

* A sticking plaster to a structural problem?

What it’s like to wear the badge…

“Are you going to catch me if I pass out?”

Jo, 21, lives with “a bunch of chronic illnesses,” including M.E/ CFS, Ehlers-Danlos Syndrome, PoTS and Endometriosis.

“I get dizzy very quickly and get blood pooling,” they explain. “Having a seat makes sure I don’t pass out and stops me from feeling as much fatigue and pain from having to stand and balance on the tube.” They add:

“It’s not like, ‘I’m a bit tired, I want to sit down.’ It’s like, ‘Are you going to catch me if I pass out?’

Jo wears their badge attached to their sunflower lanyard, because it “makes people believe you more”. But they describe the experience as “very hit-or-miss”.

“Sometimes people will look at the badge, look at me and just stare [...] Because I'm young and people don't understand that young people can have disabilities and need support. But other times people are really lovely and they offer me a seat straight away.”

“A very deep fear of having to justify”

Hugh, 30, moved to London from Australia seven years ago. He has Limb Girdle Muscular Dystrophy, and while he is able to stand if he really has to, he “will feel pain”, will “run out of energy elsewhere”, and has “a risk of falling.”

He’s worn the badge only a handful of times, because of “not wanting to be singled out, not being sure that people really know what it's for, and also a fear of not being believed.”

He’s seen horror stories online about people “being challenged or harassed in public”:

“I have a very deep fear of that, and needing to explain or justify. I think also because my disability is rare, if I tell people what it is, they won't have heard of it. Having to explain it feels very vulnerable.”

Thankfully Hugh recently had a positive experience on the Tube, where a fellow passenger reacted to his badge kindly and discreetly, giving him a seat: “I was nearly brought to tears because I have such a fear of the opposite happening.”

“Unless you’ve got a crutch, you’re not taken seriously”

Ysé, 26, is autistic, has anxiety and PTSD, and gets extremely overwhelmed on public transport. Sitting down gives her space from other passengers and reduces overstimulation: “Every sensory input that I receive multiplies and multiplies and multiplies.”

She wears the ‘Please Offer Me a Seat’ card on a sunflower lanyard, because the bright green lanyard is more visible and is also more widely recognised. And yet after wearing it for four years, she has not once been proactively ‘offered’ a seat. Despite this, she continues to wear the card, describing it as “my independence.”

She asks people in the priority seats if she can sit down, showing them her card and lanyard, which provide a visual cue that she’s “eligible” without having to explain the ins and outs of her disability. She has occasionally been refused, and once was laughed and shouted at, but most of the time someone will get up when asked by her directly. However, she says:

“I will then keep showing the lanyard because when people give me their seats, I’ll get a lot of dirty looks. Unless [you have] a very visible disability, you’ve got a crutch or something, [you’re] not taken seriously.”

She adds:

“If someone has a Baby on Board badge, people will offer them a seat. But the disability one, you see that less.”

Parallels with pregnancy

TFL’s ‘Baby on board’ badge was introduced in 2006, and is now claimed by 80,000 people each year. Remembering that my cousin Helena wore the ‘Baby on board’ badge in 2024 when she was pregnant, I ask her about her experience.

She tells me that wearing the badge, she was given a seat on the Tube probably 60-70% of the time – usually by young women in their twenties or thirties. When no one got up for her, she would ask them directly.

“I don’t think I ever got met with anyone saying no, at that point,” she says, “Although some people do look disgruntled. I think a lot of people pretend to be engrossed in their phone or book. They just don’t want to make eye contact.”

Helena especially needed to sit down early on in her pregnancy because she felt nauseous and faint. But at that stage, though she wore the badge, she “wasn’t visibly massive, so people were less likely to offer a seat.”

Though Helena’s experience was a “mixed bag”, she doesn’t describe the fear, guilt or second-guessing oneself that seems be part and parcel of having a non-visible impairment.

On a reddit discussion about the ‘Please Offer Me a Seat’ badge, one woman writes:

“For a month I switched out my ‘please offer me a seat’ for a ‘baby on board’ badge because I was curious about the relative success rate. Every busy tube ride with a ‘baby on board’ badge I’d get offered a seat whereas with the disability badge it was about one in four.”

It’s interesting how pregnancy –a kind of temporary disablement– usually receives public legitimacy, while people with chronic non-visible illness are so often questioned or accused of malingering. It’s strange, given that so many of the symptoms (nausea, fatigue, feeling faint) are similar.

“Men should have the strength”

Meanwhile, Hugh is affected by a different set of expectations – namely the “perception of me being a man, and my age, that I should have the strength.”

Due to his muscular dystrophy, he is weaker in his upper body and struggles to lift his arms above his shoulders. “I physically can’t,” he tells me, “Rather than it’s tiring or painful.”

Not long ago, on a flight, he asked the cabin crew if they could help him put his bag in the overhead lockers. The air hostess told him, “If it’s too heavy for you, it would be too heavy for me.”

While a masculine presentation can open your disabled identity up to scrutiny, presenting as feminine or put-together can, paradoxically, have a similar effect:

“I find that I get more judgement if I’m wearing makeup, or if I’m dressed nicely,” says Ysé. “It’s almost like you can’t present yourself well and also be disabled.”

“A culture of suspicion”

Even though the vast majority (70-80%) of impairments are non-visible, in the popular conception disability is still so often synonymous with a wheelchair. There is a stark lack of disabled representation in the media, and when disability is represented, there is often an over-reliance on images of wheelchair-users.

But I think there is something darker going on, as well. In a political climate where people are competing for limited resources, people with non-visible impairments become an easy scapegoat.

“I frequently feel I have to justify my disability,” says Hugh. “I think it relates to the current narrative of ‘disabled people cheating benefits’ or ‘people stealing their grandparents’ Blue Badge’.”

In the UK, the public obsession with ‘catching’ disabled people ‘faking it’ is longstanding. In the noughties, use of the term ‘benefits-scroungers’ was rampant; after Covid, Prime Minister Rishi Sunak used the term ‘work-shy’; most recently, the Motability scheme (which leases cars to disabled people) has been attacked in similar terms.

Ableist rhetoric is now being used to describe all sorts of different disability benefits and initiatives. Last month, an article about the sunflower lanyard in The Telegraph had the provocative subtitle “Self-diagnosed passengers use disability lanyard to claim VIP lounge access.“

In The Guardian, Frances Ryan describes a “culture of suspicion” in which disabled blue badge users are experiencing a rise in abuse.

Meanwhile online, when a disabled content creator goes viral, the comments section often reveals an equally insidious problem. Under a TikTok about the ‘Please Offer Me a Seat’ badge by creator Disabled Eliza, the top comments are overwhelmingly negative.

“‘how can I be a victim today’” reads one comment with 20k likes.

“no one owes you anything. hope this helps”, reads another, with 19.4k likes.

“i would ignore this totally”, reads another, with 3.9k likes.

Passing and masking

When the stress of disclosure becomes overwhelming, some people prefer to conceal their impairments. That some of us can hide our impairments on command is a privilege. And yet doing so can be physically or mentally painful.

“I have the luxury with my energy budgeting of being able to say, okay, if I get on a train and there just isn't a seat that's readily available for me, I just decide to give up that energy and push through,” says Hugh, “Rather than experiencing the risk of public humiliation.”

In order to “pass” as neurotypical in public, Ysé goes to great lengths to hide that she is autistic – a strategy known as masking. For example, she’ll suppress her stimming, even when experiencing a meltdown. But masking is exhausting:

“I always felt like I have to keep it internally,” she says. “But it’s all still happening inside. I’m just not physically showing it. And then I would not be able to leave bed for the next couple of days because of how much stress my body has not been able to express.”

The design of the badge

So what’s the solution? Could the design of the badge be more effective and less frightening to wear?

The first thing that strikes me about its design is that it lacks any explicit reference to disability.

Jo says:

“I understand why the TfL sign is there to show it's an official TfL thing. But maybe adding a hint of something to signal that it's because I have disabilities, so people understand why [to offer me a seat]. Because sometimes people are just confused.”

Jo suggests adding the “generic wheelchair sign”, known officially as the International Symbol of Access (ISA); the ISA has been a global emblem for accessibility for 50+ years, since its adoption by the United Nations in 1974. Jo and Ysé also both suggest adding the phrase “Remember not all impairments and conditions are visible” to the badge (it’s already on the card, and on TfL signage).

I personally think the badge could also be made bigger, because on crowded trains and in winter especially, it isn’t very visible and is easily hidden by layers of clothing.

Raising awareness

Ysé thinks the effectiveness of the badge could be improved with better signage, particularly for priority seats. “They’re not consistent,” she says, “And because of that they’re difficult to see. If they were consistent with the design of the badge, for example, it’d be easier to notice.” She also suggests a campaign that explains why different badge-users might need to sit down.

TfL seems to be taking small steps in that direction. They recently partnered on Instagram with influencer Bella Roberts, who has lymphedema and made a video about why she uses the badge on the Tube.

Meanwhile, during this year’s Priority Seating Week, TfL launched a campaign raising awareness of the ‘Please offer me a seat’ scheme featuring Dame Tracey Emin, one of the UK’s most acclaimed artists. Emin had surgery for bladder cancer in 2020 and now lives with a stoma bag.

For one week, Emin voiced an announcement on station platforms:

“I’d like to encourage you to look up, look around and see if there’s anyone who might need the seat more than you. Remember not all disabilities, like my own, are visible.”

A sticking plaster for a structural problem

Most people on public transport are exhausted, distracted by their phones and own concerns, or too awkward to know how to manage an interaction with a badge-wearer. Are we asking too much of a 4cm piece of plastic?

The badge doesn’t exist in a vacuum: its meaning is shaped and informed by our media and politics, and right now the disabled community is in the firing line of a culture war.

And yet the disabled individual is expected to compensate for a structural problem. But if we had better infrastructure, no passengers –disabled or otherwise– would have to compete for such limited seating. The badge is merely a sticking plaster.

Shouldn’t we really be asking: why are our trains so crowded? Why are they so hot, with air-conditioning on just 40% of the network? Why are they so loud, with noise levels higher than a concert and damaging our hearing? And why can wheelchair-users still not meaningfully access most of the network?

In an essay about the sunflower lanyard, Christiane Link writes:

“When a £1.30 lanyard becomes the key to reasonable adjustments that should have been provided as standard (for everyone who needs them, without requiring disclosure or standing in a queue), then the system was broken before anyone tried to game it.”

She adds:

“Asking someone to choose between public identification and going without support is not inclusion. It’s good branding of a lack of inclusion.”

Another danger of this kind of public identification is that it can end up being enforced. In 2024, at a school in Stockport, disabled students were forced to wear sunflower lanyards, which marked them out as different and led to their being targeted by bullies.

Making the badge work for me

Despite its many flaws, I’m glad the ‘Please offer me a seat’ badge exists. I know I rely on it because I panic when I misplace it, and I miss it when I use a metro system abroad.

The badge has never worked for me in the way it promised: I’m not often offered a seat. And yet I continue to wear it because it helps me in other ways. Once a seat does become available, it emboldens me to make a beeline for it, to unashamedly claim it, to not spend my journey sweating that I’ll be forced to get up for every person older than me. It gives me what Ysé describes as a “safety net.”

A few years ago, I ‘hacked’ my badge to make it better suit my needs. I attached it to a small piece of velvet with velcro on one side, so that I can attach it quickly to the strap of my bag before getting on the Tube, and quickly take it off when I leave. This has made my badge more visible and durable, while reducing unwanted attention.

In her brilliant book on accessibility and design, What Can A Body Do?, Sara Hendren envisions an accessible future:

“What has been relegated to private life – the realm of the family, with its invisible labors and dependencies of all kinds – might be recovered and acknowledged as a realm for public concern. Assistance, dependence, vulnerability: these embodied experiences have the dignity of the truly human about them.”

Until then? I’ll keep taking the Tube, doing my best to avoid rush hour, and central London, and hot summer days. And I’ll keep wearing my badge, keep taking it off the second I leave the station.

And I’ll try to have faith that other people will also have faith in me.

What’s the alternative?

– Celestine

Thank you…

Thank you so much to Jo, Hugh, Ysé and Helena for sharing your experiences and photos with me – I couldn’t have written this essay without you.

Thanks to Christiane Link and Sara Hendren for such interesting writing on accessibility.

Thank you once again to Theodore Fraser for review of an early draft and essential editing. Go subscribe to his new Substack, where he’s writing a serialised novel!

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.

Thanks for reading Body Babble! Subscribe for free to receive new posts and support my work.

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: ‘F**k 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

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 Theodore Fraser for essential editing.

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

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?

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, the rise of the far-right and backlash to “woke” diversity, equity, and inclusion initiatives, there has arguably been a slowing down of stories by underrepresented voices. And yet, for much of the last decade, it felt like what me and my filmmakers friends were seeing in London was part of a growing, global trend towards disability media — a kind of 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 felt like the focus of the disability movement had shifted. As accessibility became more enshrined in our laws globally, did our focus move 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. To our amazement, 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 posted. ‘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 conscientious 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 a******s?

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

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 Theodore Fraser 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…

Thanks for reading Body Babble! Subscribe for free to receive new essays about bodies and belonging.

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

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 Theodore Fraser for essential editing.

Dear every body,

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

A few updates before we begin…

* 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!

* 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).

* 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.

Thanks for reading Body Babble! Subscribe for free to receive new posts and support my work.

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 f**k,’ 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 F**k: 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

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 Theodore Fraser for editing.

Body Babble is free to read! If you enjoyed this post, please help encourage me to keep writing by sharing it with others.

This essay was originally published in Disability Debrief under the title “Going off-script”, and edited by Peter Torres Fremlin.

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?

Thanks for reading Body Babble! Subscribe for free to receive new posts and support my work.

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

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 Theodore Fraser for editing this re-published version.

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?

Thanks for reading Body Babble! Subscribe for free to receive new posts and support my work.

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 Theodore Fraser for editing.

Thanks for reading Body Babble! Please consider subscribing and sharing the article if you enjoyed it.

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.