Tag Archives: powerchair

My wheelchair is not a prison!

12 Sunday Mar 2017

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Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple days in a row with only minor consequences.  Without their wheelchairs, tens of thousands of people in this country would have no access to education, work, or a life outside of their homes.
The futon is my prison, and the wheelchair is my freedom and my best friend.
I will admit to getting a bit (extra) depressed from time to time because I miss being able to do the things I used to love – dancing, climbing, scrambling, hiking (basically anything involving going up mountains), kayaking – but what people often fail to understand is that even if I didn’t need my wheelchair, or the crutches I sometimes use, I wouldn’t be able to do these things anymore anyway. The wheelchair is not the symptom of my condition or my limitations, it is the thing that helps me continue to do what I have left. So don’t aim your sympathy at my wheelchair -maybe channel it into anger at the lack of wheelchair access I and other disabled people face instead!

The email I wish I was sending.

04 Tuesday Oct 2016

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[CN: abusive parents, disability shaming, fat shaming, mentions of weight.]

I got an email from my mother last week, after we met for a coffee last Friday. It was the first time she had seen me using my powerchair and, looking back at the suspicious lack of comment, I guess she was saving her opinions so not to spoil the afternoon.

So the email came. Usual niceties “lovely to see you”…. then:

However, seeing you in the electric wheelchair, I can’t help feeling concerned about your well-being.

Followed by some information copied and pasted from the official EDS-UK page about how important exercise is.

I had to close my laptop before I wrote the email I wanted to reply with. It’s taken me up until now to feel like I can even write it as a cathartic exercise. I’m still not sure I’ll be able to send an actual reply without putting some sort of barb in there. Her attitude towards my newly-rediscovered mobility isn’t exactly a surprise; she has a long history of dismissive behaviour when it comes to my health, especially things which are visible. Here are a few notable examples:

  • I pulled tendons in my racket arm during a PE class when I was 13. That weekend said we could go out for a meal (a rare treat)….but only if I removed my sling.
  • A bad concussion the next year, via an accident in drama class, was dismissed with “just sleep it off”, although the school nurse had told her to take me to a doctor. I spent the weekend groggy on the sofa.
  • When I was 15 she gave my knee supports away to a friend’s daughter.

I suspect my childhood list only ends there because I stopped living with her when I was 15. I’m not even going to get started on the mental health stuff. That’s a whole other barrage of awful (“I think I’m depressed.” “Don’t be so silly.”). In adulthood it hasn’t gotten much better. I lived with her for a brief while after uni; on more than one occasion she barged into my room in the early afternoon, pulled my covers off, screamed at me to get up, to stop being such a lazy bitch. I didn’t have a diagnosis at that point, but tried to explain that it wasn’t just “being tired”. She shot back with “I’ve had two children under five, I was tired but I got up”.  In my imagination I shout “BUT YOU COULD!” after her. Now I do have a diagnosis, I’m not a “lazy bitch” anymore, at least out loud.
So here’s the email I wish I could write.

Dear Mum, 

Thank you for your email expressing concern over my newfound ability to leave the house whenever I want. However it has raised some questions for me which I hope you can answer. 

Are you embarrassed to have a disabled child? 
Because that’s how it’s coming across – that it’s fine for me to have this condition (that you never bothered learning about until you could try and use it against me like this) as long as it’s not visible to others and especially not when I’m with you.

Why the concern now? 
Was it not concerning when I was unable to leave the house for weeks at a time?
And if not, was this because at least I was being disabled out of the sight of others?

Why is my weight gain more concerning than my ability to leave the house?
(You are aware that I became exercise-intolerant long before I got the powerchair, right?)

I hope to hear from you soon. 
Love to you and [insert name of current partner],
Nina

That was far politer than I had intended. I can’t even unleash the fury on a vaguely-anonymous blog. In my head I’d made a huge list of things that were not “concerning” which had a far greater impact on me (such as when I told her my dad was physically abusive and she told me it wasn’t illegal so she couldn’t do anything) – but gain a stone and THAT’s cause for concern.

What I will write will probably be polite, terse, and contain a link to something about the detrimental effect of exercise on exercise-intolerant patients with chronic fatigue. No  questions, no accusations, maybe a “you’ve never been in my situation so stop judging me” at the worst. I wish I could send the one up there, but I’m scared of the reply. I’m embarrassed that her opinion can do this to me. Every time something like this happens I come closer to just cutting her off.