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Something I’ve noticed as medical advances become more commonplace when it comes to supporting people with disabilities, is that we don’t have a concept of the intermediary process between a solution, and its actual implementation.
In the mind of an able bodied person, when the word “cure’ or “medical solution” is used, there is an assumption that it means everything will be fine. When we see on the news that an eyedrop which can eradicate cataracts has been invented, or that a vaccine for HIV is in process – we think that means an immediate change.
This thought process comes from the cure school of thinking – if we find a way to fix it it’ll just get better. But those of us who are disabled, we know that’s not true.
For example, that cataract eye drop? Won’t work on me. My cataract is nearly 30 years old. My eye is functionally dead – and even if we could somehow get it to work, there’s no guarantee that my eyes would figure out how to work together. The learning curve for seeing out of both eyes would be exhausting. It would be an enormous change.
My brain has rewired itself to see out of one eye, I’ve got it on lockdown – you know what? I can function like an adult. Being put back at square one, being put back at a time where I crashed into everything and hadn’t figured out all the tricks for being partially sighted,. back to before, I don’t want that. I don’t want to be incapable of walking around the block by myself.
I want the freedoms I have earned for myself. A cure doesn’t mean that the changes to someones life wouldn’t be drastic. A cure doesn’t guarantee an easy transition.
That transition for me could be a year, or more! That transition is not something I want to live through. I have a career I’ve built for myself. I have a family that counts on me for housework, dog and cat care, and support. I don’t have time to spent a year or more learning how to see again.
It’s the same thing for my friends whose bodies do not support them in walking. If a cure were found, it doesn’t mean they would just be able to get up out of their wheelchairs, or cast away their crutches and canes. Their bodies would need to retrain, to learn how to walk.
And that doesn’t even address the identity issues.
When I posted about identity first language I spoke about how I am who I am because of how I was born – and that’s true. It isn’t that I’m not interested in support, or medical change, it’s that this IS a part of me. Would I learn to change who I was if I wasn’t blind or deaf? Yes, yes I would. But it would be hard. Again, it wouldn’t be a simple shift of thought, it would be a RADICAL change in the way that I looked at myself – and the way that my friends and family see and treat me.
I’m not saying that change, and adjustments aren’t worthy things to aspire to, or that those who seek out to change their circumstances through medical intervention aren’t totally correct in their choices – but that’s just it it – it’s a choice. It’s a choice that will change you, and one that won’t always be an easy snap of the fingers.
I don’t reject medical change – but I look askance at anyone who suggests that the options are “Get cured or you’re a terrible person who wants to wallow in your disability.” A cure or medical intervention is not simply a return to a previous state – what if that state isn’t one you would ever have lived with?
What if you couldn’t remember that “previous” state because it ended when you were 3 months old?
And what if these “cures” don’t actually work for you? It’s possible that LASIK could help my single sighted eye – but they won’t do the surgery because if they fuck that up, I’m screwed. Other people aren’t eligible for LASIK at all.
Even if you think that someone can have a cure that exists, it’s possible they don’t.
There is no off on switch for a disability. There’s shifts, changes, and adaptations – and each one might cost you in time, or energy in order to adapt. Asking people why they choose not to “fix” themselves assumes that the fix is inherently simple. The truth of matter, is that there is no simple change we can make for disability – except to provide more access for those of us who live with disabilities.
So the next time that you see a news article spreading the good news of a new way to fix the disabled, think about how many hours it would take to adapt and adjust to that new change before you share it. And when you do share it, consider talking about how great the science is, while also considering the realities of how it might affect someone on your facebook or twitter feeds.
Think outside the cure box – think inside the “life” box.