For a while now I’ve been thinking about the idea of my disabled identity as a piece of performance art, rather than a ubiquitous human experience. This is because of the similarities I’ve noticed amongst my friends in the disability community and through really delving into how I want to be seen as a disabled individual as I work to develop my social media presence.
Thanks to my time in Barcelona, working with dancer and choreographer Tamar Rogoff, I feel as though I was able to tie together a lot of these thoughts that I’ve been developing over the last few years and bulk them out into something nice and juicy. Witnessing my body change as I was working with Tamar got me thinking about how much Cerebral Palsy has affected me, not just physically but in the creation of who I am as a person. Having a congenital disability it can be hard to distinguish between my personal quirks and things that have come about as a result of my experiences and diagnoses as a disabled individual, so I often question who exactly I’d be without my wonky brain?
As a disabled person I am used to disrupting. With my limp and my bright green wheelchair, everywhere I go I elicit surprise from the public, their stares trying to make sense of my difference. Put perfectly in Bodies in Commotion, disability is considered out of the ordinary, separate from the everyday, a cause for pause and consideration, and I’ve certainly felt aware of this for as long as I can remember. This is where the performance aspect comes in, for me I’ve come to realise more than ever, that my disability manifests a lot in my persona, and I think this is a common experience for a lot of disabled people. We often take on board people’s perceptions of disability and either make it our mission to reverse them, or we collect them, using them as a mould for a caricature of our disabled selves. I’m sure the same thing could be witnessed in gender expression, race and, so on.
So how is this shown? Well it means if our disabilities determine that we are not seen as being conventionally attractive, we can be edgy. If we are not graceful, we can be the humorous or boisterous. If we are not sexy, we can be the tomboys and the shy guys. And people are going to stare, we can put on a performance!
I also think bigger than this, is how we are disabled. Are we inspirational, are we bold, are we unapologetic? It seems the more radical we are in our approach, the more right we have to claim the identity, to take ownership of it. You absorb from your experiences and from how people react to your disabled being, whilst working to turn yourself into something consumable… or something completely the opposite. Then you practice it until it sticks. You’re constantly adjusting and adapting. From this process comes a unique fashion sense, a wicked sense of humour, bold mannerisms, a nickname, all adding to your personhood. Disability also gives you certain opportunities, both positive and negative, and it invites certain people into your life, as does any marker of identity, and this continues to mould you as a person, further blurring the line between the person and the impairment. I think this is why it is so hard for me to remove myself from my disability and imagine life without it. Of course I could do without the pain, discomfort, and a struggle for accessibility, but how much of myself would I lose in the process? What would the space I occupy mean?
A large part of my self expression originates in my asymmetry, in my swagger, it’s centred around my physicality. I’ve learnt to exist outside the box, so what happen if I’m put back inside of it? Perhaps I’d continue to grow; I’d adopt a new, more fluid physicality, that would be just as charismatic but kinder to my body. And perhaps my self self-deprecating humour, which has been my way to explain, my way to make people comfortable, would translate into the other aspects of my life and identity. One thing I know for sure is that my tomboyish style, will always remain uniquely my own. Maybe I can make changes to the facade, but Cerebral Palsy will always be with me, I’ll always be Robyn, no matter how many elements of myself I chose to drop or pick up. After all you couldn’t have Ziggy Stardust without Major Tom.