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. 3 days ago

    The politics of sitting down

    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

    21 min
  2. 11 Mar

    The blind aesthetic

    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 exp

    17 min
  3. 17 Feb

    Do disabled artists have to be activists?

    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 crea

    17 min
  4. 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
  5. 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
  6. 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
  7. 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