I’ve always felt like a misfit among what I call the able-bodied folk or uprights. I knew I wouldn’t fit in – I come with wheels attached.
Take sport, for example. Netball was the girls’ sport at school, but I couldn’t play school sports because the netball courts of the late 80s and 90s weren’t designed for someone like me, using both an electric wheelchair and only one arm. There weren’t any other options at the time, so I was left on the sidelines in many ways at my sport obsessed school.
To be fair, mostly I wasn’t harassed by my teachers or peers about missing sports. I was definitely sidelined, though, and awkwardly so. It took the form of a strange type of “don’t ask, don’t tell”; an early version of the elephant in the room that no one really knew what to do with.
The school sport thing is just one example, but since my “otherness” among the uprights isn’t the point of this writing, I’ll leave that example there.
With a few notable exceptions, my friends and colleagues have mostly been disability allies, but they haven’t had disability directly.
I was raised to think of myself as normalish – normal but I sat down a lot.
This approach had both positive and negative effects on me. I don’t build my life or schedule around my impairment. My contribution, as distinct from my resourcing of myself, has always been paramount. The practicalities of living with a disability were certainly a factor in my decisions, but my disability was never intended to define my entire life. The impact of my disability would fluctuate as my life changed.
Having surgery was different, but generally speaking, appointments with physiotherapy and hydrotherapy happened after school or on weekends because, like other kids my age, school was my top priority. If that meant the physiotherapist waited until my mother could get off her full-time job and collect me from the library, that’s what happened. They never complained, and I know that because trust me, I would have heard about it if they did. Education was paramount, and mainstreaming was important for both me and my expectations.
This approach might have been unusual at the time, but it was largely the one we took. I don’t have much data to go on, but it seems like it would be unusual now, at least in terms of expectations.
I’ve also gone through periods of feeling like a misfit in the disabled world. After all, I went through mainstream schooling, went to university, and grew up in regional areas that limited my exposure to the world of services and service providers (for good and for ill, I suppose). It’s important to remember that the service provider “environment” I started out with vastly predates the National Disability Insurance Scheme (NDIS) that we have in Australia now (also for good or for ill).
Back in the day, (which incidentally is before most of my current expert specialists were born), the idea was that as a disabled person, my job was to achieve as much as possible myself. Independence was the goal, and it was celebrated when we built capacity and needed less help. The more we could do for ourselves, the better things got. This allowed me to expand my horizons and expectations, and achieving goals was something to be celebrated both in my close personal environment and in the broader sense. Hopefully, this made me feel more confident within myself, and then I could look to how else I could grow.
What’s next?
Just as when a child first learns to talk, they babble. Hopefully, everyone around them celebrates the babbling. But once babbling has been achieved and the celebration has passed, looking starts towards next steps towards words and phrases. There’s no joy in finding an adult who aged 30 can still only babble and has become conditioned to being lauded for it. Of course, the true limits to capacity must be respected, but I think there has been a tendency to protect the billable hours of the supporting workforce first and foremost, over the expansion of the world view or skill set of the person living with disability, much less the fiction that was sold to us as choice and control..