In my last post I discussed the power of narrative and how reclaiming our stories can be a transformative and empowering act. Now I want to disrupt that claim and have a bit of a ruckus with myself in order to complicate matters. It’s a nice idea that we can simply imagine ourselves anew whenever we choose, and that there are unacknowledged others within all of us just awaiting recognition. I can invest in this belief as a feminist, a disability theorist, a writer, and an optimist because in each of these aspects I refuse to accept master signifiers. I cannot however adhere to
this belief quite so easily as a disabled female. I hold firm to the therapeutic value of such a practice, and encourage those of us who feel insignificant, damaged and redundant to have some revision time with the self, but as a mind/body which experiences pain, confusion, and the consequences of being removed from the socially preferred and thus privileged body norm; I quickly feel the flaws in this strategy.
When I was eventually diagnosed with multiple sclerosis, I had known for years what was occurring in my central nervous system, and thought the final verdict would have little effect on my sense of self; how wrong I was. The initial relief of a solid diagnosis soon gave way to complete existential crisis. My body was at war with itself; my worst neurotic tendencies had become manifest in my physicality. The lesions on my brain and spinal cord represented to me every self desecrating thought I’d ever had. Questioning everything in my past from diet to nationality to the abusive relationships I have tolerated; I performed an historical autopsy on myself. I’m not quite a control freak, but I confess that I do not cope well when I can’t understand and unpick something. The worst was yet to come. Probably due to the stress I was putting on myself I began to lose knowledge: words, sentences, useful facts, grammar, you name it I muddled it, or misplaced it entirely. Not such a big problem perhaps if I hadn’t just returned to university to finish a degree. I couldn’t say with any real conviction who or what I was anymore; it became so clear to me that I am just a collection of utterances and influences, once they fade away…
Then there was the sexual identity collapse. In and out of hampered vision, vertigo, limping, forgetfulness, depression, incontinence, numbness (including clitoral and labial), distorted sensitivity, hyper-sensitivity (Queue Mercury: don’t touch me now, cus I’m havin’ a shit time); I lost all sense of myself as a sexual being. Desire was out the window along with any feelings of body agency or worth.
Why am I sharing such intimate details (again)? Because these experiences put contesting flesh on the bones of my personal ruckus with the power of narrative. On the one hand I was in (and still am, under the terms and conditions of a relapsing remitting contract that I do not recall signing) so much pain physically, emotionally and psychologically. The idea of reimagining and reclaiming anything whilst in such a space is quite frankly an insult. When a person can barely hold a pen, look at a computer screen, or string a sentence together; how the hell are we going to see the potential diversity within ourselves, or connect with a mode that entices our potentiality into realisation?
I can feel a rather academic squabble coming on regarding the medical and social models. Endlessly debated in disability studies in the UK at least; I have been living with these theories as well as analysing them for the last couple of years. In short, the medical model places disability in the individual mind/body; it is a totally pathological phenomena. The social model holds environment and attitudes responsible for ‘disabling’ people with impairments. As with many theories, I find the battle for dominance somewhat unnecessary, and in this instance the two really must remain in conversation. Without a doubt, my MS is pathological and no amount of supposed access, or reasonable adjustments from society is going to make the very embodied fact of the matter disappear. Society can tweek architecture and town planning, enlarge text and lower contrast, give me extra toilet breaks, hell, you can even bubble wrap me on particularly bumpy days. None of this ‘enables’ me to step beyond the dis-ease of the illness. It can help, but we can’t design disability away. Equally, there is no magic medicine to ‘cure’ me, there is no rehabilitation program that can outrun or outwit my condition.
Back to the story then.
Strangely, it was in finding these competing narratives within disability studies that I realised the power of narrative itself. As I began to work with my now legally and medically binding status, I decided to seek out alternative stories. Beyond access and rehabilitation debates, I found a vibrant world of difference where people are setting their own agendas. This would be the side of crip culture that is rarely if ever spoken about in polite society, in fact hold up, crip culture, how many of you know this exists? Artists, musicians, dancers, writers, actors, acrobats, burlesque, kinksters and deviants, everywhere expressing and demanding the right to personal autonomy, creativity, pleasure and desire, everywhere demanding the right to reclaim and reimagine their own stories and identities in whatever way they so choose, or are able.
When a group of people are marginalised, a sub-culture will rise and the margins will begin to define their own centre; no longer erased from the page, bodies write themselves back in to the text. By our own terms, in our own time and with our own abilities. I can’t help but come full circle and feel content with the notion of narrative unfinished. Always in the becoming with latent possibilities. We can find our selves from seemingly the most hopeless conditions, and make new meanings with seemingly the most final of verdicts. By our own terms, in our own time and with our own abilities.
- Just want to acknowledge the death of Oliver Sacks earlier today. What a man, what a story.
- I want to make it clear that this blog is a very personal set of ideas and I appreciate the complex challenges faced by many who identify with the term disabled. As I move forward with the posts I hope to address issues around learning difficulties and impairments as well as pmld. This blog does not attempt to universalise, essentialise or simplify any body. If any such feeling is caused please contact me.