When I shared my post “Celebrating My Life” one commenter pointed out that “very few people are as comfortable in their skins” as I am.
This got me thinking about what makes it possible for me to not only be ok being me, but to be proud of who I am.
What makes me an unapologetic, unabashed, proud disabled woman?
According to followers of the medical model of disability – most doctors and all the self-proclaimed “experts” – I have a long list of “devastating”, “severe” and even tragic deficits and impairments. Their “deficits list” would look like this:
Autistic (the medical model considers autism a deficit in and of itself)
Needs help eating
Needs help with all personal care
Has intractable epilepsy, with seizures almost every day
Has GI issues
Can walk but is very unbalanced. Sometimes uses a wheelchair.
Poor motor coordination
Poor motor planning, making aspiration likely
Has no sense of safety
IQ is around 25
And the one that was actually part of a school file: “has no human dignity”.
According to this “list of deficits”, my life is unbearable and I must “suffer”. Not to mention that I must make my family’s life miserable too.
The thing is, even if I do fit this list (I don’t really know my IQ and I don’t care, since “intelligence” is subjective and does not measure worth), I don’t consider any of items in the list “deficits”. Yes, it can be hard sometimes – I am, after all, a human being. I am sure every human being experiences hard times – but everything in this list is part of who I am and I refuse to call myself a “bag of deficits”, even if Very Famous People insist on trying to define me. And I do have human dignity, as everyone else does, despite all that’s been said about and done to me
Proponents of the medical model of disability believe everything needs to be normalized (even if they cannot define “normal”). If it cannot be “fixed”, then it is of little value and not a reason for pride.
I debunk this notion. I know who I am and I am proud, comfortable in my skin.
I do hope epilepsy can be cured but for now it is part of me and I am not less proud of myself.
I am proud of myself because I am an independent thinker. I don’t need accommodations to think by myself. I need accommodations to let people know how and what I think, and feel.
This brings me to human supports and the answer I gave in an interview:
“Q: What alternative kind of support is the most helpful to you?
A: I cannot say it is alternative because my answer is: human support. I can do what I set myself up for doing if I have someone who respects me, who understands my needs, and who supports me without judgment.”
I think that this is the most important kind of support.
It is not pity.
It is not “inspirational”.
It does not ignore.
It values my whole.
Human support means more than having a human being by my side. It means having someone who sees my humanity and who allows me to be my own self, no shame, no fear.
Being proud of myself is not a superpower.
It is simply the result of my humanity being respected.
I am comfortable in my skin because I have the human supports I need.
I have friends and they value me, for me.
If I give up on my pride, I give up on my friends. I let them down.
I don’t want to let us down. We all need each other.