This is something of a manifesto piece – sometimes something just crystalises why I write about what I do – and I feel moved to explain myself because those moments deserve to be acknowledged.
I’ve written before about how I’ve Stuck Two Fingers Up To The Universe as a means of survival and how this can over time develop into an unhelpful piece of internalised ableism. I recommend you read that blog entry, but the short version, is that in order to survive a metric shit-tonne of underlying ableist prejudice, I conceded a lot of my individuality by consciously disengaging from questions of disability identity, sexuality and aspiration. Several things have happened in my personal life since I wrote that entry that mean I’m starting to tentatively look at reclaiming some of that ground.
It’s very strange at the age of almost 30 to be honestly investigating central parts of my identity. I think this is in large part because over the years I’ve forged a strong identity regarding my disability and because disability will be with me for all of my life and has therefore never let up, that identity has become a central part of my ‘normal’. So much of that identity in my case has been centred around proving people wrong. Everything from learning and then keeping the ability to walk, to succeeding in school, to living independently and a myriad of other things has had an element of something or someone representing a Can’t – something to push against and prove wrong. I think this is partly why I embraced the social model so strongly in my teens and early twenties. A lot of disability identity and culture is quite rightly based on having to prove to the ableds that our lives are not endless pity parties of misery, despair and competitive misery and ‘whatifs’. As I’ve said before on these pages, the social model works for so many because it really attacks the medicalising of disability and the idea that we have to survive on the charity of professionals in metaphorical shining armour. It gives a sense of radical empowerment which plays very well when you have a feeling that you’re always going to get something or someone to push against.
Curiously, the people or causes that disabled people are almost always asked to push against are negative in their assumptions about our abilities. If this is your experience then, it’s hardly surprising that like me, you’ll see your disability as something to be accepted as is, and seen as a positive – not to be pitied and patted on the head, but something to be accommodated and adapted for – after all we are humans too, even if from some of the stares, a few people still have doubts. That means that we are often unwittingly forced into an image of disability identity as a relentlessly positive thing in order to survive, thrive and flourish.
As readers of this blog will know, this is an image I have a great many problems with. It doesn’t in my view, offer us the space to discuss, vent about, be frank about and express the negative aspects of life with a disability that are inherent to the underlying medical condition. So much of my journey with disability identity is about finding a space for myself to do this, and to feel safe enough to do it publicly and openly and with honesty.
Why am I telling you this? After all, this is something that you probably grasped if you read this blog or have heard or seen me talk about this – and I’ve done a lot of that lately! I think it’s down to a few things, but the main one came about last week. I’d been asked by a physio friend of mine to speak to an audience of her colleagues about some of the disability identity writing I’ve been doing, as well as some of the work she and I have collaborated on over the past year. This was a little daunting because it was actually the first time I’ve spoken about this stuff to an audience in the same room as myself! The talk, and the resulting Q&A went very well, and left me very positive about a number of aspects moving forward – which I may write about in later entries – but one of the best moments of the event for me was when someone who’s known me for over 20 years, told me that she’d been reading the blog for a while, and appreciated it so much because I acknowledged that sometimes in her words ‘disability is shit’. I couldn’t have asked for a better review.
So much of my journey and struggle with this stuff, has been about accepting and learning to live with the fact that sometimes disability is in fact shit. And that that is OK to say. I’ve gone from a social model warrior, to someone who craves nuance on this issue. I’m looking for a new disability identity that allows both the gold and the broken pieces. I’m looking for an identity which I see as humanoid kintsugi, an acceptance of both sides of the disability experience. I often worry that these pages will be seen as an unrelentingly negative complaint about life with CP and I really want to dispel that. If we can learn to accept both sides, then the disability identity that results will be broader, more honest and more human.
I want to reclaim some of the ground that I’d conceded when I stuck to fingers up to the universe, even if that ground includes things that are difficult to engage with and may be seen as negative. It feels strange, unsettling and sometimes frightening to address my issues around body image and self-loathing, grief, loss and feeling left behind, or feeling that my government does not care about me. But by acknowledging that sometimes disability is shit and looking at the negative bits, I hope to have a disability identity on my own terms, rather than on the terms that society wants me to have it.