On Blogging Against Disablism Day.
I. I do not have disability pride. I realize this makes me something of a political anomaly, especially among the folks who are posting today, but I see nothing positive in the train-wreck that is my neurochemistry, and if the Cure we all like to hypothesize about were found, I'd be first in line to try it. For those of you who are new here, by the way, I'm talking about major depression and basilar migraine with aura. And luckily, although they're not cures, there are treatments that at the moment are working pretty well - meaning that, although I still have to pretty much micromanage my life around avoiding triggers, my migraines are becoming rarer and it's been a while since the last time I seriously believed the world would be better if I weren't in it. If I'm proud of anything, I'm proud of that.
II. This isn't a perspective I'm particularly comfortable with. Isn't it a sign of internalized ablism, after all, to hate one's disability, to want it cured, to view it as a source of weakness rather than a rallying point? I'm the first one in line, in my personal and my professional life, to point out that Deafness isn't inherently worse than being hearing, and that there is definitely some logic to the idea that cochlear implants can be considered offensive. I play devil's advocate in conversation, pointing out that nobody is entirely self-reliant, and that the difference between someone who can't grow their own food and someone who can't lift food to their mouth is only a difference of degree. I read along with glee or fury (depending on the tone of the piece) as activists every year describe their protests of the Jerry Lewis telethon, arguing that focusing on the Cure devalues the lives they have lived and takes resources away from efforts to support them as disabled adults. In short, it seems I'm very pro-disability - except when it comes to my own.
III. So, if I'm not proud of having disabilities, I must be ashamed. Once I work through that shame, I can take up the banner and see myself for the unique badass depressed migraineur that I was always meant to be. Right?
Well, no. I'm not ashamed, per se. I don't believe that having a doubly-dysfunctional brain has anything to do with my worth as a person (except insofar as doubting my worth as a person is actually a symptom), and although I'm cautious about how and when I disclose, it has more to do with stigma management than any sense that I'm actually in the wrong. No, I'm not ashamed so much as pissed off. I don't like fighting against my own mind for the right to get out of bed in the morning. I don't like suddenly being hit with so much pain that I'd claw my own eye out were it not for the fact that I have to remain completely motionless or the pain will get worse. And I don't really care that Poe, van Gogh, and Kierkegaard had depression, or that Hildegard von Bingen's miraculous visions were actually the result of migraine auras: I look at them and I don't think, Wow, look how creative depression made them, but rather, Wow, I wonder how much more we could have seen of their brilliance if it hadn't been hidden in the fog of so many bad days.
And that's the thing. So many people I know say that their disability has made them who they are in ways that they wouldn't want to change. Mine have made me who I am in ways that I would trade in a heartbeat. There has been no advantage to the loss of clarity they have caused me, the loss of forward momentum, the long-term and nearly permanent loss of hope. The fact that I have recovered, for the time being, from these things is not a testament to the character-building power of adversity. It's a testament to the power of good psychopharmaceuticals - nothing more mystical than that. Depression and migraine aren't part of me, like some disabilities are part of the people who experience them. They're malignant little houseguests who have long outstayed their welcome.
IV. That's not to say that I don't feel the need for disability advocacy. I've been on the receiving end of ablism even worse than the mere thought that maybe I'd be better off not disabled. In academia, where the mind is everything, anything that interferes with the life of the mind is a threat; and so it is that my advisor (a wonderful woman who watches my back) warned me that the faculty considered me "intelligent but unstable," and that it was not my smarts but my sanity I needed to prove. So it is that my graduate-studies director told me, in front of the dean of the division, that "academia isn't the place for everyone, and if you're too emotional to survive here, there's no shame in getting out now." When I responded by asking the dean for the contact information of the university's disability services office, he said, "Well, there's really no need to be adversarial, I think. I believe we can all just keep our wits about us and be rational about this rather than resorting to any formal proceedings."
Yeah. In other words, don't be crazy. If you'll just do things my way - the sane way - we'll see about letting you stay here.
I insisted on getting her contact information. I've never used it, though. Just knowing that I had it made a big difference in the administration's attitudes. The fact that I could call myself what I was - a student with a disability, not just some overwrought weepy little girl who shouldn't be in grad school - gave me some power in their eyes. Not enough to make them believe that I belonged there, but enough to make them believe that I'd dig in my heels and insist on staying.
What I have done since then is formed a network of sorts - an underground information railroad of female grad students with mental illnesses. We trade reports on who the most punctual psychiatrists on campus are, what new meds each of us are trying, how we're coping with the stress of grad school and the tightrope walk of depression, which administrators are sympathetic and which to avoid. We're not particularly proud, but we're not going be shamed, either. We're savvy, we're in control, and we're fighting the ablism that hits us the hardest, with the tools we have. And, you know what? It works, more or less.
V. My life is worth living. Most days, I believe that. But I don't believe that my disabilities have any effect on the equation one way or another - except that, if I had never had them, I would probably have a longer time in which to lead a worthwhile life. In my case (and I don't want to generalize to other disabilities, or even to other people with my exact same diagnoses), disability is not a crucial part of my identity, except by accident, so the prospect of removing it from my life isn't a judgment on who I am. But the fact is, it's here - and accident or not, it's a part of the person other people see as me. You can offer me help on my terms, but don't you ever offer to "help" me by shutting me out of opportunity on the grounds that I "might not survive it." I may fail the Internalized Ablism Litmus Test, but I'm still activist enough to protect myself.