“Personally I don’t believe in the word disabled. I feel it has a negative connotation and it’s just not part of my vocabulary. But that’s just me.”
<sarcasm> Yes, I can see your point. Disabled is such a negative word and should not be part of my vocabulary, either. I believe in using only positive words in my self-identity so…..what to call myself now?
Hmm.. Henry? No, that is a very positive word but it’s already taken. Shoe tree? I like that one a lot, but you know, I think we can go just a little bit more positive. Wait, wait, I think I have it.
LEGEND! Now there’s a positive word! I am not “disabled.” I AM LEGEND!
Yes! If you have been cringing every time you see or hear the word “disabled,” please feel free to refer to me as legend instead. Much more awesome, right?
Since I have you here, can I talk a little bit about the word “disabled” now? We’ve removed it from our vocabularies so you shouldn’t feel threatened about a little chat. It’s an obsolete word now. Archaic. Outdated. So last week. All that negative energy and power has just been whooshed out of it, so let’s talk about this deflated word that can’t hurt us any more.
What does it mean to say “I am disabled”? It’s an adjective, like pretty, clumsy, white, clever, and so on. More specifically, it’s an adjective made out of a participle form of a verb: to disable. Present participle adjectives show that something is being done (e.g disabling) and past participle adjectives show that something was done to one (e.g. disabled).
So the real question here, is this: if I am disabled, who or what has done the disabling? This is not just grammar and semantics. This is a really important question because so much of the fear and loathing directed toward the identity label “disabled” stems from a lack of consensus about the answer to this question.
When I say “I am disabled,” I do not actually mean that I am disabled BY autism. I am not disabled BY Ehler-Danlös Syndrome (EDS). I am not disabled BY hypernychthemeral syndrome (N24). These are all things I experience and things that contribute, each on their own level, to my sense of identity. I am Autistic. I do have EDS and N24. And in the case of EDS and N24, there are very clear impairments that are challenging for me to live with. I have unstable joints that cause pain. I have a disrupted circadian rhythm that causes difficulty in syncing with the rest of the world and frequently leads to exhaustion so chronic it’s hard to function.
But what is disabling me are things like ableist attitudes that want to reduce me to a burden or an object suitable for crafting inspiration porn. (Believe me, I find it pretty inspiring to wake up on time but I really don’t want to be pictured in a meme for managing to make it to breakfast on time. Which, in case you were wondering, happens maybe four times a year, at best.)
What is disabling me are barriers to access — social events with too little structure and too much noise; masses of stairs with no elevator or with an elevator that I am told not to use because I am able to walk; evening classes in very brightly lit rooms using red markers on a whiteboard that I am unable to see through my circadian therapy glasses. And attitudes about those access barriers that pile them even higher rather than lower them sufficiently for me to enter the social arena, the workplace, etc. “Well, you look just fine to me. You can stop on the stairs to rest.” “Be grateful that you can walk at all. I’m not here to pamper you.” “That noise isn’t so bad. Just tune it out. You’ll get used to it.” “My blue marker is dry. Take those tinted glasses off and you can read the board, too.”
My autism does come with some intrinsic difficulties, but they are nothing compared to the difficulties that come from living in a world that would rather people like me go through therapies designed to help us pretend we are not who we are so that others can be more comfortable being around us. EDS hurts every day but it doesn’t hurt anywhere near as much as it hurts to be excluded by others who diminish my difficulties and grow impatient with me for being slower, doing less, and needing help. N24 can be frustrating and depressing, especially during those times when I’m stuck only awake at night and only asleep in the daytime. I miss the sunshine. But what is even more frustrating and depressing is when my social isolation is compounded by a lack of understanding or even a desire to try to understand. “If you just got a better alarm clock.” “If you just tried harder.” “If you really wanted to be at my birthday party / wedding / barbecue you would have gone to bed earlier the night before.”
When I say “I am disabled,” I am not saying that I am broken or defective or lacking something. I am not even referring to the impairments I have, real and challenging though they are. When I say “I am disabled,” that is shorthand for “I am disabled by a society that is so caught up in its warped visions of success, beauty, and what makes a human being valuable that it rarely even sees me and when it does see me, it would rather pity me or be falsely and objectifyingly inspired by me than reach over to pull a chair up to the table so I can join in with the rest of the human race.”
Fortunately, however, I don’t need to say any of that anymore.
Because from now on, I am not disabled.
I AM LEGEND!
(I would close the sarcasm tag, but it seems as pointless as making my bed every time I wake up, knowing I’m just going to lay back down and mess it up again in a few hours.)