"I want people to see me not my disability."
"Don't label me disabled."
"I may use a wheelchair but that's not the most important thing about me."
I am more than my disability."
"I see you as you, I don't notice your disability."
"They people I work with are just like regular people."
"I don't see disability I see ability."
"You shouldn't think of yourself as disabled."
The last little while I've been hearing these kinds of sentiments from disabled people and from non disabled people all the time. They are always said with conviction, on the part of disabled people, and a sense of generosity by the non disabled.
But I shudder when I hear them.
Ableism and disphobia are rooted the 'more than' and 'don't see' sentiments that are so commonly spoken and so seldomly challenged.
"I am MORE THAN my disability" kind of means that you figure that disability makes you less and that other parts of you make you more. I want to be seen with a different identity. I want to be seen as a more valued role, a role that trumps my disability status.
"Don't see my disability, see me," kind of means that you are wanting to shed yourself of disability identity and that you are something different and better than the disability you experience. You are asking of another person to actively not see, or to pretend not to see, something you find shameful. It's a request for double deception and an agreement to pretense.
I understand that we wear multiple identities throughout our lives. I understand that we all want to be seen and respected for who we are. But that can never happen if we don't respect who we are, if we need social coddling and a giant social agreement that what is, isn't. Words that describe are words damned as labels.
We become the unspeakables.
We become the willing invisibles.
A long while ago I decided that I am done with pretense. I am what I am and I can speak and hear about myself as I am.
But I get shushed ...
Two days ago someone told me not to call myself disabled because I'm more than that.
Three days ago someone told me not to refer to myself as fat, even in context, because I shouldn't be mean to myself.
Shushed.
For speaking openly about who I am.
Silenced.
For being okay about my body, it's shape and the mechanisms by which it moves.
In both situations, I took exception. I will speak of myself freely. At 65 it's finally noon and my weight and my chair cast no shadow.
No.
Shadow.
I think one of the reasons I keep going to choir - in the crypt of the Princeton U. chapel, an hour before Mass - is that I stubbornly want the students (all young and healthy) to SEE me using a walker to get there, leg braces sometimes which need adjusting, and that I will be slower getting back upstairs than they are - but that all that doesn't mean I can't sing.
ReplyDeleteI hope, subliminally, it will stick in their heads. These are students who will really do things in the world, with their connections, their access to venture capital, their training and expectations. I've spent time singing with them for over five years. I'm THERE. And it's no big deal (except I keep having to wave them past me on the stairs and the communion line because I'm slow).
I'm also far older than they are. And more regular than most. I've been married twice as long as some of the younger ones have been ALIVE. So I'm still there anyway, and do the same thing they do. They take me for granted - as they take each other. But I hope I have left a tiny mark.
My feelings on this are really complicated. Everything you say is right. But also. There are other things people can mean when we say these things. And not all of us have the words to say everything, all at once. So we say what we can. And sometimes the only way I can say things is a way that looks similar to the stuff you're reacting to. But means something entirely different. Many words work like that: They can mean both a thing, and its opposite. "I'm a person first, disability second" can be a plea for denial, it can also be the only words someone has to explain what it's like to be dehumanized. And I sure as hell can't describe both situations at once. So sometimes I say things that sound exactly like you say. And other times I talk about being utterly stifled by emphasizing labels. And I don't think we actually disagree. Nor do I think I agree with everyone who talks about labels being bad -- some people just use that as an excuse to wave away valid descriptions and actual human differences. (And nor would I agree with everyone who says what you're saying. But I do agree with what you're saying, to the best of my knowledge to know what you mean by it. But there are other things other people could say that sound the same and mean the opposite, too.)
ReplyDeleteAnyway, if I waited to be able to type about all of these things at once, to put words around all of it, I'd never write anything. So I sometimes have to say things partially. I think honestly we all do. Just please understand when I say things that sound like the things you're reacting to, I'm not saying the things you're reacting to. I hate those things just as much. I just don't have infinite words.
An additional comment to my last one:
ReplyDeleteSometimes I encounter a problem where I'm dealing with someone where, in that moment, the only two options are for them to see that I'm disabled and not see me as a full human being, or for them to see that I'm (what they think makes) a full human being by ignoring that I'm disabled.
Ideally, I'd be able to say "I'm disabled AND human, both," and insist on them seeing both. Ideally, I'd be able to get them to see that pretending I'm not disabled to make me human can have devastating consequences, and so can pretending I'm not human because I'm disabled.
Sometimes, that's not possible.
Sometimes, I have to make a choice, in that moment, to emphasize one or the other.
Sometimes, the stakes are survival.
Sometimes, it's gonna suck for me no matter which I choose, but I have to choose one. Or have it chosen for me.
In the broader sense, with time, I do all I can to teach people that disability and humanity are not just not mutually exclusive, but go hand in hand for pretty much all of us, currently disabled or not. That recognizing both at once in their proper context is the only way you can see a whole person instead of cutting vital parts of them off in your mind and them suffering the consequences.
In the immediate present, faced with situations that can be pretty serious, though, sometimes I have to make a choice. And I don't always make the same choice. It depends on situation.
I used to want to be 'just like a normal person'-to be able to hide all the effects of chronic PTSD, to be 'thin, blonde, and stupid" - as that was the opposite of me and it seemed to be an easier way to be in the world. In both cases I was 'disowning' my self - my body, my brain, my psyche, my spirit, my unique way of seeing and being human. it's that othering - I wanted to be who I was not, because I hated who I was.
ReplyDeleteStill working on caring for and honoring who I am, and not focusing of faults/failures/regrets.
I'm now far from home, living in Silicon Valley. External appearance and status symbols are so important. I am proud to be a 'fat broad' with gray hair, well-insulated body, and an affinity for a wardrobe that my 80+ year old clients think is attractive. What makes me unique makes me different, in ways that makes others puzzled or uncomfortable.
Yes, it is lonely. And far harder for most with disabilities than it is for me. My skin crawls when I hear attractive women and men talk about how fat they are, etc. I can only imagine it how it grates on you, Dave, in your personal and professional worlds.
Honesty is hard. Truth is like a sword.
Kudos to you and Alicia for being who you are, right out loud. It does matter.
There would be nothing wrong with seeing somebody as disabled if there wasn't a stigma against disability. At the same time, we are all humans, and our disabilities don't define everything about us - depending on our individual situations, they affect us all in individual ways. And then we all have other individual differences on top of that - cultural, religious, etc. Diversity doesn't revolve around one thing that makes somebody different from your basic white male Protestant, after all. I'm a woman. I'm Jewish on my dad's side. I'm a dwarf, the cause of said being a virtually unheard-of it's so rare type. I'm politically liberal (scarily so probably by most American standards), and live in a very conservative state aside from the bit of it I'm in. I'm basically straight, though I am occasionally attracted to other women.
ReplyDeleteI'm lots of things. As are we all. See my dwarfism all you want as long as you aren't insulting me (honest inquiries are welcome) but it's not the one thing that defines me. IF you can't see past that then it's not my problem.