I have spent most of my life playing down the impact of my disabilities on my identity. This will always be a totally futile and quite ridiculous exercise. I have spina bifida and hydrocephalus. It’s the most ‘serious’ kind, too. No messing around. I can’t walk, I have non-verbal learning disabilities, I’ve had a lot of surgery, I have some level of pain most of the time, and since becoming an adult I have acquired a catalogue of health problems too tedious to mention here. My disabilities are becoming harder to push into the background. Something has got to give. My disabilities are going nowhere and, like it or not, they are a big part of who I am, so I’m having to rethink disability and identity.
Being disabled has never been ‘cool’ and, for the most part, disability is not considered desirable. That’s not to say I’m ashamed of who I am, not at all. I’ve never given a damn about being ‘cool’ for a start. I have always had good self esteem and I think at least a big chunk of that has to do with having disabilities. Because there has never been anyone even close to resembling me in the media, I have never felt the need to compare myself or the way I look to anybody. I have felt more free to be who I am, chiefly because I haven’t a hope of being anything like anyone else. How’s that for positive spin? I like myself for the most part. I think I’m quite a well-balanced person. Until recently though, aspects of who I am, other than disability, have been far more important to me. Gender and sexuality are the main ways through which I have expressed my identity; woman with a penchant for playing with gender norms and lesbian, in case you were wondering.
Disability as an identity one might embrace is, for me, problematic. It has always had negative connotations and ideas attached to it that I’ve been trying to shake my entire life. According to various pervasive stereotypes we are: stupid; incapable; dependant; a burden on our families and on society; we are victims, and for all of these things and more, we are to be pitied. We are also, in the tradition of simplistic and banal dichotomies: brave, heroic and inspirational, which is why it is so worth keeping us around, for we have so much to teach the world about struggle. Pass the bucket. People’s perceptions of disability often make me want to scream in anger and despair. I guess that’s been a good enough reason thus far to want to actively ignore the impact of my own disabilities on the formation of my identity.
Like it or not, disability has shaped me more than anything else. Disability is always there. Every aspect of my life is affected and influenced by my disabilities. That’s why I’ve decided to explore who I am and how my disabilities make me so unique. Even now though, I find it a difficult subject to concentrate on and to properly get into. It’s a shift in focus I’m not yet entirely comfortable with, despite having written fairly extensively about it in recent times. This is an evolving state, thank goodness. Fighting in the shallows against something you can’t change is exhausting. Better to go deeper and find out exactly what and why it is you’re fighting.