de-medicalisation of identity
19 February, ,2020
What do you do when someone wants to get to know you more, and shows genuine curiosity about your body’s origin story? What words do you use? How do you tell it in a way that doesn’t frame it as an extraneous happenstance to who you are, but as a foundational thing, which makes you you? How do you prevent that person from imagining who you could, (hopefully, they’re not thinking “should” here) have been? I am not the kind of person, who backs away from talking about who and what I am. I’m very adept at talking about my body, what it’s been through, what I’ve put it through, how resilient it is. I am grateful and proud of it, I’m lucky to live with it - so far it’s been a more-than-decent, reliable home.
From an early age, I was given the words to describe my brain damage. As a kid, I could state it as a fact about myself, e.g. my brain just has difficulty talking to my muscles, and then move on.
As a adult, intelligent and well-meaning people ask more vailed, gentler and more prodding questions. I try to catch people off guard, to counter their alienating gingerliness, to make them realise what they are actually implying.
Those questions often lead me to my infancy and medical objectification, I don’t mind discussing these things, as they are a significant part of me, that doesn’t have an excessive amount of emotion attached to them. However, if it is a stranger, I am hyperconscious of the words i use about my disability, because I don’t want them to pity me and reinforce the notion that my body is damaged. I always answer their questions as brazenly and candidly as I can, to confront people and attempt to normalise my disability. I have claimed power and ownership over my body, by claiming and embracing the words and stories people use to objectify and devalue it.
Although there’s two things that catch me and momentarily unravel me as I’m telling a childhood disability story, they are parental grief, and the medical terms that imply deficiency.
My parents discussed my disability and social stigma with me from an early age, and I understood their sporadic sadness in that context. In my earlier years, we all wished for my body to be less rebellious and for my vocalisations to magically become recognisable words (for me, it was pure fantasy. For them, it was still a slim potentiality). I guess we sort of grieved together, for the easier and even more boring life I would never lead.
I imagine being a good parent involves constantly accepting what is in front of you and nurturing who your child is ,and abandoning your own wants and projections. So in that sense, having a new-born with a disability just accelerates and accentuates these foundational processes of letting things be.
Yet, I still think and feel how hard it initially would be, because your world and identity has already been blown apart by having a baby, trying to love it, and trying to protect it and not to kill it. It would be difficult to be told that this minuscule human already has more things to contend with, that their life and appearance will potentially be scrutinised more closely and you cannot protect them. Imagining that moment for my parents upsets me, and for a millisecond, the ghost of who I might have been hovers. But then, I remember all the other things that my siblings and I have done and gone through that has caused so much more heartache and that working through these things is just what being a parent entails. (In her life as a mother, my mum would probably say my physical disability doesn’t even rate on the emotional scale, well not anymore).
A line of what-if thinking feels disrespectful to my body, if I sit with it longer than a second or two. But what’s more unsettling is being unable to describe how my brain works entirely outside the medical framework, prominently because there’s all the pity those clinical terms elicit. I have no problem with saying I have ‘brain damage’ and that my muscles are a little spastic’. These things are just facts, like other facts about my identity, they are things that I embrace. I guess It also helps to remove the stigma around by using those words in an ordinary and comfortable way.
It’s interesting because with friends, I often use words like ‘excitable’, ‘overly keen to help’ and ‘ sometimes defiant’ when talking about my muscles. I don’t know why I do that, I don’t know what that distinction is about.
Perhaps I don’t feel the need to quickly own clinical words as much, to comfort and reassure my body that it’s not inadequate, because I know those words probably aren’t in my friends’ minds, and if they are, they don’t have a negative connotation. I don’t know, it’s complicated and I guess being in the medical system from such an early age is traumatic, and people develop ways to cope.