Disability is absolutely fine, for everyone but me.

“Don’t film me looking disabled.” Those weren’t my exact words, I said “Do you have to film me walking up the stairs?” but I only said it because I think I look disabled walking up stairs.

BBC Three have been filming me as part of a documentary about young people with disabilities and the cameraman had just set up the tripod, ready to film me navigating a rather large and awkward set of 3 steps. The truth is, no, they don’t have to film me walking up the stairs, they’ve been great at making sure I’m comfortable with the content throughout the whole journey and if I’d have said bugger off, they would have. But the producer had a point about me waffling on about my disability and mobility issues, then only appearing on screen looking ship-shape and perfectly balanced, even if that is with the help of a walking stick. She also offered to let me watch the clip back to help me make up my mind. By choosing to appear in this programme I am clearly identifying as someone with a disability. So what’s my issue?

It likely stems from years of pretending I wasn’t depressed. It was easier to contort my face into a grin and throw around a few superficial laughs than try broach the “I don’t want to kill myself, but I don’t want to live” conversation. That is a sure fire way to alienate yourself (and perhaps something I should bear in mind when trying to avoid social interaction with overbearing strangers). I didn’t particularly want people to know I was struggling because even if they wanted to help, they usually couldn’t, and that just gets uncomfortable for both parties. More importantly, I felt weak. I would never consider anyone else dealing with mental health problems to be weak, I just judged myself more harshly.

I must think I can pretend my out of being disabled too. I try. The first few months out of hospital after learning to walk again were spent avoiding any kind of walking aid. Okay, most people must have believed I was drunk as I swaggered through narrow spaces and knocked clothes off rails in charity shops (I’m pretty sure I was pointed out as a potential shoplifter once or twice) but at least they didn’t think I was disabled. Bambi was my role model. I had been thrust from the safety of hospital corridors onto the slippery ice of ‘the real world’ and pictured myself flailing wildly for a short while before – with the help of a small friendly rabbit perhaps – finding my feet. To a certain extent I achieved that, minus small friendly rabbit, but had to eventually accept a walking stick as new item of kit to arm myself with before leaving the door on particularly wobbly leg days. Oh, and my mother didn’t get shot by a poacher which is always a bonus. I think we can leave the Bambi similarities there.
Still, I slap on a smile, pretend I don’t feel like someone is tearing the skin off my back, fight through the fatigue until I crash, and I try incredibly hard to walk as ‘normally’ as possible. Shoulders back, head up, legs organised and moving one in front of the other. It would be much easier to slouch and let my legs flail all over the place, but clearly, I have an issue with looking disabled.

I’ve never had an issue with disability. I grew up accepting that disabled people experience challenges I’d likely never face, but the differences ended there. It’s not even that I thought beneath the disability there is a person just like me; the person was always first and foremost, and I thank my mum for guiding me in the ways she did so I’d continue with that childhood ability to not judge or feel awkward about differences.
Now I’m the one with the differences you’d think I’d be okay with that wouldn’t you? No. Because obviously disability is absolutely fine for everyone but me.

Having a disability is still relatively new to me, I’ve only been walking again for 9 months. Give it another year and I’ll be a total pro (can one be professionally disabled?). The thing is, I’m not even that disabled. I haven’t had to adjust to life using a wheelchair, or even relying permanently on a walking aid. I can breathe without a ventilator, I can speak clearly and express my thoughts as I wish. I just wobble a bit when I walk. I do have to continually think ‘stay upright’ or I’ll fall down, and I have to actively remind my left leg to move forward when I walk. If I’m in a busy, noisy place these thoughts have to try even harder to get through and I either can’t move or I bump into everything and want to cry. My future promises undefined ‘further disability’, so I think I’d be doing myself a favour if I came to terms with this whole being disabled malarkey. Why do I think disability isn’t fine for me anyway? Arrogance? Denial? Feeling like I’m not disabled enough to be called disabled? Secret deep-seated negative views towards disability? Fear? I’ve considered them all, and I’m still not sure if I’m a complete wanker or not. I hope not.

By the way, I didn’t watch back the clip of me walking up the steps, and I don’t want to, because in my head a sashayed up them.

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9 responses to “Disability is absolutely fine, for everyone but me.

  1. thank you for sharing your thoughts. i especially identified with your comments about depression, pasting on a smile. i am not able to pretend i’m not disabled (the wheelchair is a dead giveaway), so maybe i am professionally disabled. there is plenty of wishing i wasn’t, as in your experience with the stairs, and the larger struggle is in accepting that this body is broken, and learning, somehow, to be ok with that. i’ve got a long way to go.

  2. Keep sashaying you’re doing fine petal. I find myself apologising everytime i have to pay at the checkout when my hands dont work and it takes ten minutes to pull my card out of my purse. Anyway bambi became world renowned and worth millions 😉

  3. You are very brave to be on this documentary!! I sometimes feel the same way, I’m not that disabled. But my mind keeps me from functioning on the most basic levels, some days. It’s quite a quandary, quantifying disability. Some days I can get up and go. Other days, it’s a total wash, on the couch, waiting for bedtime. I am inspired by your courage 🙂

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