I have to admit, I have a really, really hard time calling myself “disabled”. I have no issues with others identifying as such. I really admire and applaud the disability rights movement, and I follow a number of disability activists on Twitter. The thing is, I’m not sure where I stand in relation to disability in my own circumstances.
There are certain things I simply cannot do. Does that mean I’m disabled, or that I’m simply subject to human limitations? I have a hard time figuring out where the line is drawn — if there is a line, at all. What does disability mean, anyway? That I can’t do what others can do? That I can’t do what I “should” be able to do? That I can’t do what I really want to do?
Where do I draw the line between simple human limitations and actual dis-ability?
It’s a conundrum, and I worry that I’ll inadvertently offend someone by this babble. It’s not my intention. I’m just trying to process it all.
And while I don’t have the answers, there’s a part of me that doesn’t even want to explore what the answers are. Because that could bring me face-to-face with the fact that I am, indeed, disabled in significant ways.
That thought makes me too uncomfortable for words – literally. I shut down and clam up about it. My normally chatty brain experiences the kind of selective mutism that my voice does when I’m in overload mode, feeling trapped, unable to translate the visuals in my head into actual words. I start to close down, and I hate that feeling. Vulnerable. So very vulnerable. And not much fucking fun.
When I think about it, though, realistically, and in short bursts so I don’t short out, I have to say that my difficulties go far deeper than just qualifying as “difficulties”. I’ve read some thought-provoking posts and tweets lately, that really pushed me to reconsider the extent of autism’s impact on my life… and it’s led me down a road I suspect I can’t avoid much longer — a path of actively navigating and negotiating my own individual disabilities. And if I had the energy, I’d be kicking and screaming to stop it. But I haven’t got the energy. (I won’t say “spoons” because that metaphor is intensely synaesthetically jarring to me – I can’t equate the quality of energy with the feeling I get from spoons, no matter how I try.)
Something critical occurred to me recently, as I was posting about coming to terms with my autism assessment:
Maybe, just maybe, I have a hard time wrapping my head around being disabled because of the disability itself.
I have to pay attention [to my autism now]. It’s non-negotiable. And I have to come to grips with the actually disabling aspects of my Royal Aspie-ness. It’s a stretch for me to actually consider myself disabled, and maybe it’s something I need to work towards. But truth be told, there are really significant traits that are disabling to certain aspects of my life. I hate asking for accommodations, and I hate having to navigate the social minefield of explaining my limitations to others.
Might it be — possibly… probably? — that my challenges around interacting with people socially, explaining my needs and differences, and having a terrible time making myself understood, are the very thing that keep me from dealing directly with the fact of those disabling traits?
Is my autistic disability actually screwing up my capacity to address itself in a constructive and meaningful way?
That would make sense. At least, to me. And there’s not just the internal disability of struggling to translate pictures and non-verbal concepts and feelings into verbal communication. There’s the added external disability imposed on me by a world that neither sees nor appreciates the challenges I face on a daily basis. The job expectations — especially social interactions & time commitments — which just keep increasing and exhausting me more and more, the farther I advance at work (which is supposed to be a good thing)… The interpersonal requirements for friendships which I cannot hope to meet, and the failures I’ve experienced which have actually hurt others in mortifying ways… And all along, the “support” of others pushing and pushing and pushing me to do more, engage more, try harder, which all amounts to evidence for a pernicious ableism in their attitudes, as “supportive” as they may intend to be.
Am I setting myself up for problems and troubles, by refusing to address my disabilities? Am I contributing to my own suffering by playing along with all the assumptions about what I “should” be able to do? Am I making all this a whole lot harder than it needs to be? What’s the alternative? To own up to disability, and then have to navigate a confusing, frustrating, confounding social ecosystem which doesn’t know and/or doesn’t care about what people like me need to live a decent life?
In a way, I realize I’ve been sheltering the rest of the world from my disabilities, because I didn’t want to piss them all off or rain down their ignorant wrath on my head — thus making things even worse than they already are. I’ve been protecting myself from the bullying, the teasing, the taunting, the dismissive sniffs, the atta-boy purveyors of the work-hard-play-hard mainstream hyper-verse, where there’s no excuse for not trying harder, and according to everyone, you just have to have the willingness to MAKE IT WORK. I’ve been living in fear — of both myself and my limitations, and all those who punish me for admitting I have them and asking for a bit of slack because of them.
Then again, I’m actually sheltering myself from their disdain, their bullying, their predation. If you show weakness in the world where I live, it’s “open season” on you. And being on constant guard from attack sets me off like nothing else. It turns my Royal Aspie-ness into a living hell — as I discovered from years of bullying and torment by my peers when I was a kid.
And as a grown woman, it’s particularly wretched, because women are expected to be a certain way, regardless, and when we don’t comply, we’re taken to task first by our female peers, then ridiculed and attacked by the rest of the male world. I would imagine men have the same issues, as well, but I can only speak from my own situation as a woman. And because my skills have more to do with mimicry than math, I can pass. Oh, how I can pass. At my own expense. At no one else’s really… except everyone’s, because they’re not dealing with Best Me. They’re dealing with Shadow Me.
It’s the ultimate self-fulfilling prophecy, really. I don’t accept and manage my disability, and it gets worse. I pretend it’s not a problem, covering it up or calling it a “difference”, and I come up with a million different workarounds that look good on the surface but leave me wiped out, drained, depleted of nearly all my will to go on… until I get a good night’s sleep and I wake up the next day to re-run the same cycle.
And stimming only gets me so far…
It’s logically ridiculous, when I think about it. And it needs to change.
These things take time, though. Workin’ on it..
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