My route to becoming a wheelchair-user wasn’t one that happens in the movies, no one moment when life changed, no extreme sports disaster or selfless act of bravery for which I had to pay a price. I suspect that, unlike what Hollywood might suggest, my experience of it creeping up on me is pretty common. And my way of beginning has shaped the four years since, leaving me with the nagging feeling that I ought to justify my decision to get my chair when, in reality, there was no choice.
I have CP and Perthes’ Disease and am in my forties. Walking has never been pain- free but now is akin to hopping on hot coals for an able bodied person, impractical, for anything other than a party trick, exhausting and hazardous. I cling to what I have as I am under no illusion about the freedoms that my small bit of quite rubbish walking gives me. A recent broken ankle confirmed that and instantly transformed my usually subtly adapted home, thankfully temporarily, into a hostile unwheelchair-friendly space. I can still often manage that ‘just one step’ that so many ‘accessible’ venues have; I don’t have to rely on poorly installed grab rails or transfer onto dangerously wobbly toilet seats. At the moment, I have options and I am fiercely grateful for them.
Given the right circumstances, I love my wheelchair Gliding across a shiny floor, spinning on an ice-rink (try it if you haven’t, it’s fabulous), overtaking pedestrians, speeding down ramps, buying my first stilettos because I don’t have to stand in them, all feel exhilarating. The relief of being able to think clearly, enjoy the art gallery, be in the moment because my pain is not demanding attention and filling my head.
But of course the right circumstances are demoralising rare. When I began wheeling I thought that, once I got the hang of it, the emotional toll would lessen. That hasn’t happened. I’m not upset that I need my chair, I don’t envy people whose walking is carefree; I’m just really angry with some of them. The ones who push me without asking, don’t test that their access actually works, who won’t fold their buggies on the bus, assume I don’t have a job, think my husband is some kind of saint for staying married to me (It could be argued that he is, but that has nothing to do with me being disabled). At the top of that ever-expanding list are people who make it abundantly clear that I don’t have the right to make decisions or to have an opinion. They tell me ‘You’re fine’ as I try to move, before they bump my chair, force me to go into battle because they don’t trust my judgement that their ramp will be dangerous or that the ice-rink won’t be. They don’t understand that I am getting annoyed, or upset, or defensive, because of the cumulative effect of many small indignities and frustrations.
My anger is because, mostly, the obstacles that I encounter exist because of ignorance or carelessness and each one tells me that I am now a less valued member of society.
I have learned the importance of sharing experiences with other disabled people. I am so glad that my wheelchair came post-internet. I have also learned that there will be days when I need to stay home because I don’t have the resilience that wheeling will require and that’s not because I need to change my attitude. I am a member of an often-misunderstood group and it is that misunderstanding that must change.