What if... I don't want to live at my limit anymore?
Handcycling, and doing more than just about managing
I’m very excited to soon be trying out handcycling, thanks to a local organisation which helps disabled people access the outdoors. When sorting the booking, they asked if I would be interested in trying a recumbent pedal bike as well. A completely fair question, and one I had a completely fair answer to (not right now).
But before sending that email reply, I paused for a moment. Not because I had second thoughts, but because the little ableist gremlin in the corner of my brain had second thoughts, and third thoughts, and so on.
“It would be good exercise for your legs.”
“You should try and recondition a bit.”
“Use it or lose it.”
“You might just about manage with your legs.”
The only reason those statements made me pause was because there is a tiny grain of truth in them. It would be good exercise for my legs, and I could probably just about manage it, if I took enough drugs before and after. Although the thought of doing that on a day I am going somewhere unfamiliar on multiple modes of public transport doesn’t necessarily spark joy; I know how much pain can dampen my ability to think coherently.
But I don’t want to just about manage it. I want to have fun. I want to not be in so much pain that there’s no room left in my brain to enjoy the scenery or feel the wind in my hair. I want this to feel like something I could do regularly and enjoy, something that is ultimately good for my brain. I want more than to just about manage and push through with rescue meds. I only do that for things I really love these days.
I’m sure there are people who get on really well with recumbent pedal bikes, and I love that for them! Truly I do! But I am not one of those people right now – on the day I write this, both my hips have subluxed while sat on an ergonomic desk chair – and that is completely fine.
But how much more palatable I would be, if I was pushing beyond my limits to be closer to the abled ideal. How much more sense it would make to society – because, to be clear, all of society’s insidious ableism is what fuels that gremlin in my brain – if I desperately wanted to use something closer to a ‘normal’ bike, if I desperately wanted to walk rather than wheel, if I was willing to put myself in agony to achieve those goals.
I just don’t want to live at my limit anymore, especially not now I’ve found easier, more joyful ways to live. It feels quite rebellious to say that, both against my deeply hyperindependent brain and against the society that wants disabled people to abandon ourselves in order to become ‘less disabled’. That, in my view, only makes it more worth saying.
The other part of this dialogue with societal ableism (in the form of my brain gremlin) that I pushed back against was about exercise in general. For some strange reason, when you’re disabled everyone assumes that all exercise you do must somehow, in some way, be physiotherapy. It’s something Grace Spence Green talked about in her memoir To Exist As I Am which really resonated with me. Because, yes, wheelchair basketball is good exercise for me. It has improved my shoulders, my core, and (I say this tentatively) may also be good cardio for my POTS. All of that is fairly incidental to me. I play basketball because it’s fun to zoom around a court, because I love the people, and because I get satisfaction from my skills improving and watching other people improve. I play because crashing into people and pushing yourself until there’s no room to think about anything else is fantastic stress relief at the end of the week. You know, all the reasons able-bodied people exercise, because they’re not expected to be on a constant journey of self-improvement, of striving to change fundamental aspects of themselves, to the same extent as us.1
Handcycling is no different in my mind. I like going fast, I like being outdoors, and so it is probably something I will enjoy. I am excited to try something new and especially because I get to do it with one of my friends. If it is also good for my body, that’s a bonus.
Once again – I’m stating the obvious here, but it feels so much more radical than it should.
But what if it wasn’t? Expanding this train of thought, what if society and all the systems within it didn’t encourage suffering by only helping disabled people, by only seeing our struggles as valid, at breaking point? With less stigma around living disabled lives, with adaptation encouraged before crisis and not seen as an inferior way of existing, how different would it all be? Because the ableism that echoed around my brain as I thought about adaptive cycling was about that specific activity. But it was also about everything else too.
I acknowledge that capitalism does this to us all a bit, but I still think it’s different for disabled people.