Body Babble

Celestine Fraser

Body Babble is the newsletter where crip, queer & misfit bodies talk back. Real stories of disability, queerness and belonging. By Celestine Fraser, on Substack. www.bodybabble.com

Episodes

  1. 12/12/2025

    What happened to the invalid carriage?

    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

    23 min
  2. 07/11/2025

    Imagine an accessible nightclub

    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 u

    21 min
  3. 23/10/2025

    Why are so many LGBTQ+ people disabled?

    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

    25 min
  4. 07/10/2025

    When you stammer with someone

    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

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Body Babble is the newsletter where crip, queer & misfit bodies talk back. Real stories of disability, queerness and belonging. By Celestine Fraser, on Substack. www.bodybabble.com