My friends and I are lounging by a beautiful pool in Oman, enjoying our girls-only break. There is lighthearted chat about jobs and boys and the stupid things we’ve done on nights out. It takes one mention of a dress worn somewhere, one adjustment of a bikini, for the conversation to turn to our bodies.
My group of friends are all gorgeous. But I sit and listen quietly as they list the things about themselves they do not like, bemoaning no longer being the same size or shape they were at 18 now they are in their late 20s. I try to interject, but this conversation, with its refrains of “I wish I had” and “if only I could wear”, is almost a ritual now; these women have been conditioned to go through the motions of self-criticism in order to prove that they are aware of their supposed flaws.
“You all look amazing,” I say. “Don’t buy into this rubbish!”
They laugh and nod, agreeing that the patriarchy is obviously to blame, but their responses are still noncommittal. “I know I shouldn’t care,” one says, “but I do.”
I look down at my own body, spreadeagled on a sun lounger. I look at my bent spine, my uneven hips, my hands twisted outwards – all symptoms of my cerebral palsy – and a wry smile crosses my lips. I look down at my body – disabled, ostracised and desexed by an ableist society – and I think: “Thank you, you have saved me from all this crap.”
***
I have not always been so kind towards this body of mine. As a young child, I was largely insulated from ableism by my family and friends (little kids are remarkably unfazed by difference). But as a self-conscious teenager in the looks-obsessed 00s, being bullied at school meant I spent a lot of time worrying – not about whether I looked pretty or cool, but a very specific worry about how visible my disability was (spoiler alert: very).
I have never felt as exposed as I did during year 7 swimming lessons; feeling the whole class watching and fidgeting awkwardly as I transferred into a hoist and then sat, shivering in my swimsuit, as the teachers worked out how to lower me into the water. This happened every week, and I am sure that eventually no one even glanced over, but by then it was too late. The shame had taken hold.
Beyond the pool, other insecurities multiplied. I was especially invested in whether a particular outfit I fancied from Topshop accentuated or hid my scoliosis-curved spine, as if that was more noticeable than the wheelchair I was sitting in. This manifested in some slightly quirky and certainly contradictory style choices, most notably a penchant for oversized but loud-coloured jumpers, which I wore as a quasi-uniform at my uniform-free school. They were my armour as I navigated the choppy waters of ableism for the first time – baggy so that the unusual contours of my body were concealed, but bright enough that I could tell myself people were staring at the luminous orange knit rather than my disability.
It never occurred to me to ask whether I liked how I looked from a non-disability standpoint. My body was a physical challenge to deal with, not something with any aesthetic value. While peers tried different styles and dyed their hair ever-changing colours, I wore the same jeans until they were faded, the same hoodie until it was too small, and never paused to ask myself whether this was what I wanted or if my clothes reflected who I was. When I got dressed in the morning, I was too busy worrying about the day ahead and whether my body was going to cause me any more grief to notice what I’d pulled from the drawer.
It’s hard, as an adult, to contemplate how deeply I bought into the toxic mix of ableism, sexism and pure teenage insecurity that led me to want to look “less disabled” (an idea I now find extremely uncomfortable for a variety of reasons, not least the fact that there is no such thing as looking disabled). Like most teenagers, I had an almost physical aversion to being noticed, so being in a body that kept becoming more noticeable was mortifying. Being a girl, subject to so many rules about how to look and how to fit in that I couldn’t possibly abide by, only made things worse.
Most obviously, the bullying and ostracising I experienced at school because I was different – being told I wasn’t invited to some after-school meet-up because I wouldn’t be able to do the activity or because they didn’t want my support worker to be there – made me want to minimise that difference, at least visually. Not only would I have given anything not to be disabled, but I would have given anything to efface myself completely, to have blended in so well that I disappeared.
Disabled women face even more negative messages about our bodies than our non-disabled counterparts, and this is especially true for those of us who are young. When people stare open-mouthed or flinch in horror, when people tell us that if they had to live in our bodies they would kill themselves, we are implicitly and explicitly told that our bodies are ugly, disgusting and broken; as far from the ideals of femininity as it is possible to be.
I wasn’t alone in being made to feel that my body was a freakish anomaly; studies from the 2000s, when I was growing up, show that disabled women had lower self- and body-esteem than non-disabled women, primarily linked to social ostracisation. As a teenager, I didn’t understand that the narratives around disabled female bodies were rooted in ableist and sexist assumptions about beauty, excluding everyone who was not white, non-disabled and thin, so I didn’t have any tools to resist or reject them. Instead, I felt a lot of shame, and blamed my body rather than society for all the ways I was othered. It seemed the obvious culprit. I didn’t yet know that being treated badly because of my body did not mean my body itself was bad.
Things began to change at Warwick University, where a new world of decent accessibility across campus and in my halls of residence took a lot of the strain out of navigating my body through life. Very quickly, I made friends who only cared about what I could or couldn’t do so that they could make sure I was included. I knew life for me and my body had changed when a new pal called to ask whether they should cancel a long-planned society Laser Quest social or whether there was a way I could play. I didn’t want them to cancel – being considered was the thing that mattered. I told them to go ahead and I’d meet them at the pub afterwards.
Having good, kind friends meant that a social life opened up, with nights out when I wanted to get dolled up. I still remember the day during my first term when a friend did my hair and makeup, and I squeezed myself into a tiny green bodycon dress, only to look in the mirror and surprise myself: I liked how I looked. When I wasn’t dressed up and feeling good, I still viewed my body as either an irredeemable problem to be ignored or as a source of anxiety. I wore the same few outfits – hastily purchased from New Look in the first few weeks of term – over and over. One of the many reasons I strenuously avoided dating and relationships was my absolute conviction that no one could find me attractive. Being fancied would have meant being looked at, and I still really didn’t want to be noticed.
I am ashamed to admit I had a lot of conversations with other women about our bodies at this time that left me feeling confused and jealous. I wanted to empathise, but their insecurities about barely noticeable weight gain or how their hair fell seemed ridiculous to me – nice problems to have if you weren’t worried about your posture or remembering to swallow enough to prevent dribbling (most people do this reflexively; I do not). They worried about people’s judgment, while I thought I simply had to accept that people stared and pointed. I thought they were delusional when they commented on the shapes of their chins or declared a perfectly nice top unflattering. “Why do you even notice this stuff?” I wanted to ask, indignant. I envied them their problems. I envied them their bodies.
***
Quite when envying my friends’ bodies tipped into being profoundly grateful for mine is difficult to pinpoint. But finally meeting fellow disabled people during my first few weeks at university meant that for the first time I saw bodies like mine positively represented – even if only in my living room.
Perhaps more than any other group of people, disabled women are invisible in our culture. This is true of the media, the fashion industry, and the beauty ads we are consistently fed (although perhaps things are changing, with a recent Vogue disability issue receiving widespread acclaim, and the rise of disabled influencers online). Data on disability representation is patchy and very rarely broken down by gender, but 2022 figures from Nielsen, the media data research firm, show that visibly disabled people appeared in only 0.7% of TV roles in the US. Most notable examples of good disability representation – such as RJ Mitte’s portrayal of Walt Jr in Breaking Bad or Ryan O’Connell in Special – are men.
The only way to become comfortable with one’s disabled body, then, is to surround yourself with others who also have them. Seeing the beauty – and the normality – in your disabled friends’ bodies as you share a drink and a laugh in the pub after work helps you see those qualities in your own. And slowly, slowly, shame is stripped away.
The community also taught me about a new way of seeing disability that really changed how I saw myself. The social model of disability argues that we are prevented from doing things and from being equal in society by inaccessibility and ableism, rather than by our bodies. Every time I fell into the old habit of apologising for my access needs – when we couldn’t get accessible tickets for a gig or go to the bar that looked fun – my new friends reacted with an arched eyebrow and a chorus of, “Don’t be daft, they should have a bloody ramp.” This happened so often that eventually I, too, was telling these random strangers to buy ramps (I developed a fun tactic of making them guess how much they cost on Amazon; it’s always much less than people think). It is much easier to like your body when you are not unfairly holding it responsible for every bad thing that’s ever happened to you.
These lessons gradually rewired my brain, replacing the idea I’d had of my apparently broken, ugly body with a kinder, fairer self-image. The change was so slow that I didn’t really notice until it was almost complete.
I spent my early years in journalism desperately trying to avoid broadcast work (a challenge, given that I worked for the BBC) because I hated seeing my wriggly body on screen. I knew my self-perception had shifted when I volunteered to be interviewed on BBC Breakfast about a story I was working on. But the final victory came just last year, at a glitzy press TV preview, when I noticed I was no longer trying to sit up straighter than usual, and realised I finally didn’t give a shit about my spine. Now, at 28, my relationship to my body couldn’t be more different from the one I had at university. Envy is a thing of the past. Instead, I feel a profound gratitude for the things my body has taught me. Or, more accurately, for the things I have been taught by people with bodies like mine.
Unfortunately, the rest of society still has to play catchup. Progressive thinking has moved on, a little, from judging women’s appearances, but we’re still very happy to judge abilities. Every time women are encouraged by a pastel-coloured Instagram post to love their bodies for what they can do instead of how they look, I want to scream. The truth is, some bodies can’t do very much at all. And some bodies are sites of life-altering pain and illness. But, despite what the mainstream body positivity movement tells us with thousands of influencer-style fitness posts marked #celebratewhatyourbodycando, these bodies are no less worthy of care and respect.
Recently, I’ve seen the disabled community start to forge the basis of a new brand of body positivity, one that is much more inclusive. My social media feeds, these days, are full of women proudly showing off their mobility aids or medical equipment, or documenting what they look like when fatigue means they can’t get out of bed. One of my favourite posts ever is by the actor Ruth Madeley, in which she shares a beautiful black and white picture of her spine and surgery scars, to raise awareness of scoliosis. (Sometimes, adult Lucy gets to see exactly what teenage Lucy needed to.)
Ruth’s post embodies the body positivity I only ever see in the disability community. It’s one that doesn’t put any conditions or qualifiers on loving your body. It simply says: bodies are worthy of kindness and care because we all spend our whole lives in one and because they make those lives possible. They give us the gift of existing, and the least we can do in return is refuse to be made to hate them. In other words, all bodies are good bodies. No ifs. No buts. Just acceptance.
Strangely, then, I often find that disabled women (including me) have a much healthier body image than their non-disabled counterparts – just look for the hashtags #disabledandcute or #disabledandproud on Instagram to be inundated with disabled people who love themselves and how they look. If all bodies are good bodies, there is no need to worry about weight or uneven skin, no need to angst about wrinkles. For me, there is no need to give my spine a second thought or to try to control how my hands sit in my lap.
And there is no need for shame. No need to wish ourselves less disabled, or even to look it. These days, I have no issue being noticed. I post full-body pictures on Instagram and wear what I please every single day. I do not own one oversized jumper. If anything, I take pride in being seen. Yes, it still rankles when someone does a double-take on catching sight of me, but I believe that every time I show up as conspicuously as possible, I am quietly deconstructing the myth that disabled bodies should be invisible. If people want to look at my body, good. Let them.
Teenage Lucy would not have believed this, but one of the ways I try to make this message obvious is through developing my own sense of style. I wear bright colours because I like them, not because they serve as a distraction (although I have, mercifully, foregone the awful luminous orange). I choose dresses based on how comfortable they are (meaning I have a collection of different coloured elasticated-waistline dresses from the fashion brand Joy), not whether they hide my spine or disguise my hips. I have swapped uncomfortable “feminine” shoes for a treasured collection of Dr Martens boots that make me feel confident and somehow exactly myself. I now use my appearance to express myself and all my differences.
These days, when my non-disabled friends are critical of their bodies, I am not confused or jealous. Instead, it has become a personal mission to impart the wisdom I’ve gleaned from my community. Sitting beside the pool, I wish they could see the inherent worth in their bodies, which are allowing them to feel the sun and enjoy a swim and have this giggly chat in the first place. I want them to see that society’s norms – which don’t serve anyone, disabled or not – are there to be rejected. I want them to see that looks and abilities don’t need to factor into any decision to like your body, and that you don’t need anyone’s permission to do so.
Mostly, I want them to see that disabled women not only do not hate our bodies by default, but also have valuable things to say on body image. We have been subject to the worst messages about our bodies and most of us have come out the other side, victorious. Which means that everyone else can, too.
• Lucy Webster’s The View from Down Here: Life As a Young Disabled Woman is published by Dorling Kindersley (£16.99). To support the Guardian and Observer, order your copy at guardianbookshop.com. Delivery charges may apply.
