You might not believe me, but I’m being completely honest when I say it has never bothered me one iota that I can’t stand or walk. There are a few things that I sincerely hate about having spina bifida and hydrocephalus. I value my privacy just like everyone else, so I’m not going to go into detail right now. Suffice it to say, bad health when I just want to get on with my life, is not my idea of fun.
I don’t want to paint a picture too grim, either. Despite the bad things, I have a good life and I don’t pine too much for what I can’t have. I view the ability to walk in the same category as being able to fly under my own steam; neither are ever going to happen and I’m more than happy with that.
When I was small I ‘walked’ with a walking frame and an elaborate setup of callipers that came up above my waist. I never looked forward to it. I think I probably dreaded it. The pressure through my arms and into my hands is what I remember most vividly. Red and inflamed indentations left patterns on my hands that lasted quite a while after a session of ‘walking’ with my physiotherapist. I had a standing frame as well, which I suppose was meant to condition my body to being upright. I really don’t know. In that standing frame I couldn’t go anywhere. It was beyond boring.
The thing about being a child is stuff happens to you and you don’t understand it. You don’t question much because you don’t really know where to start or even which questions to ask. I remember being so nervous when I went to my parents and told them I no longer wanted to ‘walk’. It was just too hard and with too little to gain, I didn't want to do it anymore. Being a child, I obviously didn’t phrase it quite that way. That was the gist of it, though.
I don’t think I was that nervous again until I came out to my family as gay, well over a decade later. On both occasions I needn't have worried, my parents were absolutely fine. I’m a very fortunate individual in that respect. So, I stopped what I came to view as a charade - I never did walk - and I got on with my life.
Even as a child, the freedom and independence that I had in my wheelchair versus torturously uncomfortable callipers and the enormous effort involved in dragging myself around were not lost on me. All I could do when I was inching the walking frame forward was that one thing. My arms and hands were otherwise occupied, so any other activity was out of the question.
In my wheelchair, I could play games with my sisters; I could play with my dollhouse, give my Barbie a crewcut and turn my transformer into a plane; I could rifle through Mum’s extensive music collection and educate myself on Frank Sinatra and Dean Martin, Elton John, Prince and The Rolling Stones, B.B. King and Eric Clapton, David Bowie and … that’s where I got stuck for many years, my musical development both stalled and enriched by this alien from England.
Aside from being quite possibly the most extremely inefficient way of getting around, when I was in callipers and using a walking frame, I was so cut off from my environment. My wheelchair does that too, to an extent. Most of the time though, there are ways of getting around these barriers if you have a think and work together with others.
Getting around on a beach is impossible without help, though this doesn’t matter particularly because you haven’t really experienced fun until you slide into a beach buggy (okay, in my case sliding looks suspiciously close to controlled falling).
Steps and flights of stairs are obviously impossible without a team of helpers, or inebriated friends. I do need help with very steep hills as well. Years in Wellington taught me there are some hills that cannot be climbed, or rather careened down; not unless you want to come away from the attempt with a very sore head and one eyebrow. I swear I nearly broke the sound barrier.
While there are things that I can’t do that people who walk can do with ease, even the obstacles in my life that are difficult or impossible contribute to my own personal narrative. I have some great stories. My wheelchair is both liberating and a big pain in the arse.
There have been occasions where I have wanted to tear my hair out at the difficulties and barriers in being in a wheelchair, particularly when I’m trying to get about in an inaccessible environment. Despite this, never for one second have I regretted the decision to choose freedom over walking.