Is it better to adapt your body to do what you have to do, or to change the task to meet your needs? This is something I continue to battle with, and have done so ever since I realised I was differently-abled.
The dilemma comes to the fore with me as I recall all the dance lessons I have ever had. My wonderful grandmother taught me how to dance, and was always ready to change the steps, the direction, the music, even the space, to meet my particular brand of movement; the so-called ‘Jessica-special’.
My mother, on the other hand, has always had a different approach, militantly making sure I did (and still do) the exercises set out for me by my physiotherapist, walking behind me to tell me if my feet were turning in, or just saying my name in a certain way when we’re out to alert me that I’m not walking properly; the ‘Heel-toe-Jessica’ demand.
Both approaches have their merits. Thanks to my grandmother, I have achieved more than 40 qualifications in dance, and am haphazardly working towards a teaching qualification in freestyle. Thanks to my mother, and the techniques of a strange kind of assimilation to the ‘normal’ that she taught me, I managed to take ownership of my condition, only admitting it when I feel comfortable. I didn’t have to subscribe to being disabled with either of them, because I was a good enough dancer to get by, and a good enough walker, eventually, for it to not be obvious.
But, I have often wondered, what if my grandmother hadn’t have changed things? Would I have worked harder, would I have been a better dancer? Or would I have fallen at the first hurdle and not had the resilience for the perseverance to carry on?
What if my mother hadn’t been bothered to help me build up my strength? What if she didn’t care how I looked when I walked? Would it have been easier for me to come to terms with my identity as a differently-abled person? Would I have embraced that label, and have been able to talk about it more freely? Having only just publicly come out, as it were, about my condition, perhaps it would have been easier if I had understood my CP as part of my identity at an earlier age. Or, perhaps the confines of societal misunderstanding and judgement would have held me back.
The more I think about it, the more upset it makes me. Because, having come out, I still get the people who are incredulous about my condition, they don’t believe it exists because I’ve spent my whole life with the understanding that it’s only a small part of who I am, not all that I am. I have made a concerted effort, thanks to my family and friends, to be just as good as anyone else, to drive a manual car, to walk more or less the same as everyone else, to be, for all they know, like them. So when they find out I’m both like them and not like them simultaneously, it blows their mind. I guess because when you come out, there’s a betrayal there, and for some people, who perceived you as their equal, they can’t cope with the notion that you no longer are, in the eyes of wider society.
I think people often assume that when you are disabled, differently abled, impaired etc, it is all you are, because for the most part, it is obvious — if you’re in a wheelchair, for example, you’re immediately ‘the person in the wheelchair over there, look’. But to be invisibly impaired, and to come out and admit it, is to almost undermine the status you had with the person you’ve come out to, because they have to come to terms with who you really are, and even though they may already have an inkling, for it to be out as clear as day, strips away something.
I’ve had friends, for example, who I would go out with regularly, who didn’t know anything about my condition. One time, I fell over pretty horrifically on a night out, and they just thought I was drunk, when I actually needed help. After that night, I asked a mutual friend to tell them about my condition, because I wasn’t feeling brave enough to do it myself, but I wanted them to know. They never invited me out again.
In a way, that was fine, because they were unable to equate the person they knew me as, with the person that the disclosure of my condition made me become in their minds — some kind of blithering, unstable liability, not worth asking out in case something happens. Knowing the truth becomes a responsibility that some people are prepared to bear. It’s only by dealing with the dichotomy of adaptions and assimilation to so-called normality that I’ve been able to understand that.
It may be an unanswerable dilemma then, choosing whether to adapt or change, but either way, doing both has enabled me to understand not only more about myself, but how disability is sometimes more about the (miscon/)perceptions of the able, not a reflection of my worth as a dancer, a daughter, friend and person.