Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if you want to be posh) wheelchair user and how I have grown to love my once-loathed Hot Wheels. Full disclosure: this post contains zero cat content.
The journey towards acceptance of my limitations has not been smooth or easy. The first time I used a wheelchair was when my husband and I were flying home from Italy for the final time. I knew that I would find the travelling absolutely exhausting, so was advised by friends and family to make use of the special assistance through the airport, to avoid over-exerted and the subsequent payback that comes with it. To say that I was not keen on the idea would be an understatement. I was so embarrassed at the thought of someone seeing me in a wheelchair, which really doesn’t sound good when I say it out loud. It’s not that I had ever or will ever think of being in a wheelchair as something to be embarrassed about, it was more that I was still in denial about my condition and hadn’t yet made peace with what my body was no longer capable of. How had I gotten here? How could I have gone from fit and active to wheelchair-bound in the space of a year or two? And how could I really need a wheelchair when I didn’t even have a ‘serious’ illness? People would think I was faking, or that I was doing it for attention. Everyone in the airport would stare at me, knowing that I didn’t really need that wheelchair.
As it happens, no one gave a toss except me and it really did make the whole process much more manageable.
A few months after moving home, we got our own wheelchair and I began to use it more regularly. I expected that over time I would become less uncomfortable, but that wasn’t quite the case. Whenever I was using my chair, I found myself making jokes about it - or myself - a lot. I convinced myself at the time that I was doing it to make everyone around me more comfortable. I know it wasn’t easy for some people to see me in the chair initially, so I found humour to be a helpful defence mechanism for putting everyone at their ease. I would shout “it’s a miracle!” whenever I stood up out of the chair, or quote Brian Potter from Phoenix Nights. It soon became apparent, however, that the only person truly uncomfortable with it was me. I was making these stupid jokes for my own benefit.
So why was I so uncomfortable? When I confessed to my husband that I felt everyone would question whether I really needed the chair, he asked me a very simple question: “when have you, or anyone you know for that matter, EVER questioned someone’s need for a wheelchair?” Well of course I bloody hadn’t, and I don’t know anyone who would, so why did I think everyone around me would suddenly turn into the DWP and start asking me to prove myself. It was utterly nonsensical.
As I continued to ruminate on this (and believe you me, I have a lot of time on my hands these days so I can ruminate with the best of them), I started to question whether my discomfort with my wheelchair was part of some wider social stigma or prejudice that I had unknowingly internalised? Did I view having a disability or using a mobility aid as something shameful? Absolutely not. So it was difficult for me to understand why exactly I was now judging myself for needing a chair. I knew I felt embarrassed about it, but I couldn’t quite get to the real root of the issue. Why did any outing leave me a sweating, anxious, apologetic wreck? Whenever I was out in the chair, I could physically feel myself shrinking into the smallest version of myself, in the hopes of not being seen or noticed.
I mentioned this to my Occupational Therapist during one of her visits and she told me that one of the hardest things for people with M.E to do is accept their condition. To go from living a fit, active and busy lifestyle to being housebound is very hard to swallow. To do so thanks to an illness so heavily entrenched in stigma and disbelief is even harder. Imagine how devastating it is to have your life brought to a crashing halt by a disease that can’t be treated. Imagine how much more devastating it is that many still hold the belief that your disease isn’t even real. When faced with all of this it can be hard not to doubt yourself at times, not to question if you are simply not doing enough to get well. Maybe if you just pushed yourself, you’d start to improve? Maybe it is all in your head after all.
It would appear that the only prejudice I had internalised was toward my own bloody condition.
After much soul searching, I realised that the reason I worried that people would think I didn’t really need my chair because I still couldn’t quite accept that I needed my chair. I had been viewing it as a concession, as if by relying on my wheelchair was somehow ‘giving in’. It was my mum who pointed out that the chair was simply the difference between doing something or staying in the house, and it was this that helped me begin to see my wheelchair not as something I was surrendering to, but an aid which actually empowers me to take part in activities that would otherwise be impossible or unachievable.
Since becoming an ambulatory wheelchair-user I have connected with others in my position via social media and have learned a lot about the ableist language and attitudes that are still extremely prevalent today, and just how damaging these can be. Earlier I used the term “wheelchair bound”, but I have come to realise that language like this is all part of the problem. I am not “bound to” my chair, my chair is my freedom. I am limited at the moment, so my chair is holding up the fort me. It is doing the work that my body can’t manage just now. Although I continue to hope that my limitations are not permanent, I am learning to make peace with them in all of their various forms.
And so, to my little Hot Wheels who I have mistreated and resented for far too long, I would like to offer an apology. Not only have you taught me to worry less about what other people think, you’ve enabled me to do things that would have been impossible without you. You helped me get to Oslo to watch my brother get married, you took me back to Milan to see my pals, you made it possible for me to stroll (well, roll) along the seaside. You’ve taught me a lot about acceptance and self-love, and to give significantly less f**ks about other people’s opinions of my illness.
Lastly, you’ve also helped me get the best parking and queue jump like a boss. You’re the best.