thoughts spurred by discovering the social model of disability

October 30, 2012 – 10:19 pm

Via Tim’s excellent post on equality (it’s long, and it’s both an intellectually and emotionally difficult read, but it’s worthwhile; read all the links from the roadmap; the original impetus was a series of discussions about homophobia in open source, so there are triggers in the text, though Tim does a good job of prefacing and explaining this in the post as well) …I came across the social model of disability today.

A good summary is as follows:

In short, that what makes a person “disabled” is not something about their bodies but how we design society. Being deaf is a disability when aural communication is an assumed societal default, for example. In this way of looking at things, disability becomes less about the person with disabilities being intrinsically ‘wrong’ and more about how their society and culture responds to them or conceptualises their bodily and/or neural configuration. Some disabilities do mean, irrespective of this, that things will be harder for you. But in this schema, they ‘disable’ far less and are not considered a stigmatising other that is only to be pitied, and about which nothing is to be done.

Ah.

When I read that, right before my dance rehearsal, a small explosion flowered out within me, slowly, with fragile petals.

But this is not a post about deafness. It’s a post about many things, and one of those things is deafness, but there are many more.

I am in the midst of a grueling academic schedule that won’t let up until Thanksgiving, so I’m too tired to explain more about what and why — in fact, I’m too tired to articulate or even think about what or why this moved me — but I wanted to note that it did. It did. As did another of the small sections in Tim’s post.

I worry that I don’t belong in a serious software project because I’m really some sort of new agey touchy-feely person who’s too emotional, has had too much therapy, and should generally go stare at crystals or something. Through my entire life, I have been taught to second-guess myself, that I’m an impostor, and that I don’t belong anywhere I would want to be. When other people second-guess me — when I’m talking about that over which I have sole authority, no less (my own feelings and reactions) — it doesn’t help. And that second-guessing inevitably crosses over into every single aspect of my life.

People deal with this sort of thing in different ways. I’m fortunate (and cursed) that I’m able to hide a lot of things — although anyone who knows me also knows I’m an open book and a thoroughly incompetent liar, I also have this great ability to whirl up hurricanes of energy, and I’ve learned to roughly harness them to cover up exhaustion, deafness, introversion, underconfidence, fear, sadness (most emotions, really) and a lot of other “inconvenient” things so I can prove myself, goddammit — and prove myself by whatever model other people will give me credit for, whether or not the metric is a fair one and whether or not it measures something worth measuring.

It works, in that… well, I can do it. I have proven myself, repeatedly, in many arenas. When I heard about Cal Newport’s new book, So Good They Can’t Ignore You, my first thought was that it wasn’t about being so good they can’t ignore you, but being so good because otherwise they would ignore you. Or rather, me. That’s how I feel; that’s how I’ve felt, that’s how I’ve always felt. When I was a little kid starting to dawn into my own consciousness, this is one of the first underlying threads I grew into — the view of life as a fight, and my choice to take on the role of warrior in that arena, has always been there in the same way that the top half of the piano has been silent since before I realized it was. And faking was one tactic I learned could help me win. (The battles, anyway. But always be on your guard! The war is never over.)

I’m fortunate to have the energy I need to do this faking, this proving. I count myself as lucky and privileged to have the ability to develop the skills I need to do it, access to the resources I needed for that energy, those skills. I’m grateful for that choice.

But is that what I want from life? I’m grateful for the choice I have to hide, and for the choice I have to work at proving myself with a high degree of confidence that I will eventually succeed, but… in a sense, those are still pretty crappy choices. Is that what I was made for, is that the best I can be? Because that’s what I want from life — to be what I can be, even if I can’t see what that is yet (perhaps I never will). I do believe in the concept of vocations, and I think I’ve found and am pursuing some aspects of mine — but certainly not all; the more I bloom, the more I find how much more fully alive I could be, and then I reach for that. But it’s always a tough call to go for things like that, not knowing how extended and exhausting (and potentially irreversible) any journey you set off on might be.

And so when I read writing like the writing in Tim’s post, I feel familiar strains of anguish and uncertainty and fear and hurt and anger and hope, all of these massive, gale-force things that become normal muted background noise when you live with them every day, the volcano (inadequte word: think more like RAGING MAGMA FIREBALLS CONSTANTLY CHURNING) behind the 10-meter-thick steel door, the great gulf beyond the safe circle of your small light that is — my god — full of stars.

I don’t ask anyone to go there with me. In fact, I constantly steel myself for the possibility that nobody might. When you decide (and you get to decide it again and again in every waking moment) to push at things like that, you’d better be prepared to go alone. So when anyone does, there is this rush of gratitude that takes me by surprise for those moments with fellow explorers in the void; they’re reminders that yes, this is worth doing. Learn what to do so that you can take off that thick steel door and still fully own yourself, so that while you’re swimming in that gulf of blackness, pushing at the edges of it, you’re not an astronaut all hazard-suited up against the universe; you are a star, exposed to it, igniting it.

I’m a long way from that. I don’t even dare to ask for the things I know I want — not even in private writing, not even talking to myself inside my head. At least I say that, though — acknowledge there are things I could say that are not being said. There’s a space where hopes could go up into — but right now I’m still too scared that they won’t be met, that I’ll be disappointed. In high school, some of my friends put on a production of Uncle Vanya, and when Sonya (played by Tori) wondered onstage whether uncertainty is better than knowledge, because then at least there is hope — my teenage self said yes! and no, it never is — at the same time.

Anyway. It is time to clean, time to pack, time to rest. Tomorrow is an early day; I have a lot of work to do before my 7:30 class.

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  1. One Response to “thoughts spurred by discovering the social model of disability”

  2. Permission to need is hard to come by, ironically enough in a consumerist society. It is unprofitable to dream of the impossible, or even desire things other people would have to provide. “Redistribution!” people yell, uncomfortable with the idea that their happiness isn’t solely under their control. I know that, personally, just imagining asking triggers an immediate shut-down in my brain. And yet, there are those willing to go out of their way for random strangers, much less for cool people that they already like. I even like being such a person, so I eventually decided I should let other people have the chance too. Doesn’t mean I’m good at it, mind ;-)

    My new approach is to try to bring a beginner’s mind to society. If something is difficult for me, instead of just trying harder I ask, “why is it this way? In a science fiction world, how would it be different? In a fantasy world, what spell would I cast? Why do I have to do this at all? How do other people get around the issue? How could I be approaching this differently?” Sometimes it seems frivolous to ask these questions about, oh, sweeping or laundry or going to conferences, but it’s also been useful.
    I believe all progress, all technology even, comes out of asking such questions. Illicit, selfish desire is the shared context where collaboration can happen, where needs can be fulfilled.
    Bringing that mind is still frightening. They are still sometime impossibly difficult questions to ask (“self sufficiency!” is my fear’s rallying cry.) But I am more and more convinced they are worth asking, and sometimes the answers aren’t about other people at all.

    When I can set aside my guilt, my fear of other people’s need, their struggles and conflicts become opportunities for collaboration instead of something to be hidden and ignored. I think about the times I’ve been most engaged, and it has always been some time when someone trusted me with their desires and happiness. In a world of transparency and sufficiency we would not need to hide. True collaboration almost requires that vulnerability, overcoming our fear of interdependence and accepting that other people want to include us as much as we wish to include them. (well, unless they are jerks. I’m still working on that part of my logic.)

    p.s. Have you ever considered attending WisCon? It’s where I’ve had the most interesting conversations about this stuff. They have an academic track that I bet would welcome something about RTR too :)

    By Beth on Oct 31, 2012

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