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Accepting my disability

At 14, we all had expectations of our lives, our dreams and ambitions. My 14-year-old self’s vision would have been meticulously detailed, dotted with exceptional achievements and on a trajectory to profound success. What wouldn’t have been in my vision was a wheelchair.

Like many wheelchair users, my life changed overnight. But the time between that life changing night and me accepting the inevitably of having to use a wheelchair took almost five years. And they were the worst five years of my life.

I fought that wheelchair for five years of my life, and I sacrificed a lot to do so

Able-bodied society’s assumption is that a wheelchair is for those who have no other option, whose legs just cannot move. They’re a burden, a neon sign pointing to a body that doesn’t work. They’re pity-inducing and tragic. But the moment I accepted my life as it was, stopped fighting the stigma and my own toxic projections, and sat down in that wheelchair, I was liberated.

I’d been ill for five years with what was eventually diagnosed as a genetic condition that affects the collagen in my body. In layman’s terms, the stuff that holds my body together is like PVA rather than superglue. For 14 years in an otherwise-strong body, it gave me an athletic edge that I took full advantage of in my pursuit of an England cap. But after that initial, life-changing virus, the chain reaction began and didn’t stop until the point that my body was so frail that I could no longer hold my own joints in place.

I sacrificed a life, an existence outside of the four walls of my home, because of the shame and stigma of a wheelchair

I fought that wheelchair for five years of my life, and I sacrificed a lot to do so. I spent four of my teenaged years bedbound. I missed all my GCSEs and A Level years, making do with an hour of maths’ tutoring per week to try and scrape some semblance of academic achievement. I sacrificed a life, an existence outside of the four walls of my home, because of the shame and stigma of a wheelchair.

The response I got from my medical team ranged from reluctant support (“Well, if it gets you out of the house…”), to anger (“You clearly don’t want to ‘get better’.”). For a lot of them, it suggested that I had given up trying to repair a body that had betrayed me. But what it should have suggested to them was that I was willing to try to live regardless.

There’s still a shame I feel deep down, this nagging embarrassment, that somebody ‘like me’ shouldn’t using a wheelchair. I get dirty looks pulling into disabled parking bays. People have told me I’m “too young” or “too pretty” to be in a wheelchair, or that it’s “such a shame”. What is shameful, instead, is that we’ve come so far in minority equality yet disabled people – the largest and most intersectional minority of all – is a mere afterthought.

It’s society that’s disabling me

Yes, my wheelchair is a burden. Terrain is difficult to navigate, people don’t always see you (literally, as in people have fallen over me), and architects tend to pursue aesthetics over accessibility. But is that the wheelchair’s fault? No. The wheelchair has enabled me to pursue some semblance of normality. It’s society that’s disabling me.

Accessibility is almost a dichotomy, depending on whether you ask an able-bodied or disabled person. For an able-bodied person, a lift or automatic doors might come to mind. But once you’ve experienced disability, you become aware of society’s profound inaccessibility problem. Buildings are ‘accessible’ – provided you can wave through the window for a staff member to bring out the ramp. Want to go shopping? Great, good luck getting past the narrow gaps between displays and let’s just hope you don’t want to use the disabled changing-cum-storage room. There is no such thing as a spontaneous train journey when you’ve got access requirements ­– most stations require upwards of 24 hours’ notice. The token gestures of accessibility – toilets, parking spaces, and lifts – are almost inevitably engaged by somebody who has full use of their body but selfishly prioritises their convenience over disabled people’s access.

I’ve just decided my life is more than what my body can do – or not do

People with disabilities have so much to offer society, but by refusing them accessibility, adaptations and support, society is sending the message loud and clear that it doesn’t value them like it does those whose bodies work in the expected manner. The hostility I faced among my own medical practitioners is evidence of this – I should want nothing more than to not be visibly disabled and, by accepting what is actually an inevitable fate, I am a failure.

But I’m not a failure. I’ve just decided my life is more than what my body can do – or not do. Disabled people deserve fulfilling, happy lives just as much as anyone else. And the more that we encourage their integration into society, the more we break down the stigma of disability and this toxic notion that your body needs to work like everybody else’s in order for you to be able to contribute anything to society. By making disability visible, we make inaccessibility visible too.

The wheelchair has given me the best year of life

Am I ashamed of my wheelchair? I’d be lying if I said no. I hate how people look at me when I’m in it – generally with disbelief or pity. And I am exceptionally lucky that I am not solely confined to a wheelchair and can pass as able-yet-inconvenienced on a pair of crutches for short distances. It enlightens me to the fact that people do treat people in wheelchairs differently. If I’m on crutches, questions are addressed to me and I’m not ignored or infantilised. If I’m on crutches, people ask “what have you done?” rather than “what’s wrong with you?” When I’m on crutches, I can fit into the societal narrative of acceptability because people automatically assume my invalidity is temporary.

But let’s not blame the shame on the wheelchair. The wheelchair has given me the best year of life. It has enabled me a group of friends who may not always understand disability but who are at least willing to try. It’s given me my aspirations – admittedly parred back from those of 14-year-old me – and emotional fulfilment. It’s reminded me that I have something to contribute, and that my dreams and hopes are worthy of pursuit as much as anyone else’s.

My wheelchair isn’t something worthy of shame – what is shameful is how society refuses to accommodate people who are different. To all the people who see a wheelchair as pitiful, or tragic, or a failure – you’re wrong. It’s liberation.

Comments (3)

  • Amazing and inspirational post!.I appreciate your work and your trying to give me better articles. Excellent explanation all point like an expert writer.Amazing, helpful information a lot of thanks. Great collection of articles to maintain the wheelchair.I read full post very carefully that gives me extra energy to survive my disabled life as a new human .Please post such an awesome post day by day.

  • Joan Deverelll

    Like you I fought the wheelchair for years even though I was considered seriously disabled. I watched a tv programme about Tanni Grey Thompson who said how she ’embraced’ her wheelchair.’ Good luck to you.

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