May 01, 2008

Somewhere between pride and prejudice

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.

14 comments:

The Goldfish said...

Thanks for contributing to BADD. :-)

See, I see disability pride as the absence of shame. It would be ludicrous to be proud of something we have no control over, but as with queer pride, we refuse to be ashamed.

I don't think this is inconsistent with not wanting your condition; I have pain, fatigue and cognitive symptoms which, like yourself, I would happily be released from. Yet well, obviously, I consider myself to be pretty free from internalised disableism.

The way I see it, and this is something called "The Social Model of Disability"; there's all our conditions, which are hugely various as are our individual reactions to them. But whilst you and I might have some cognitive issues in common, we don't compare to someone with Cerebral Palsy, or Deafness as you mention, or Autism - in fact, none of these things have anything in common.

Except that we share a particular status within a society that says, "These people are different, these people are inferior." And that's what I'd describe as disability - just as queerness has far less to do with the mechanics of sexual practice so much as being marked out as deviant in some way.

Forgive the lengthy comment, but I found your post very moving and I don't think you have any reason to feel awkward about your attitude toward disability - except the fact you have to live with nasty symptoms, and I'm sorry for that.

Anonymous said...

I posted a (long) comment this morning that seems not to have appeared :-(

maudite entendante said...

Anon - argh! I hate when that happens! The comment you just posted seems to have gone through, so if you feel like giving it another shot, I'd love to hear what you have to say. (Or you could send it to me - entendante@gmail - and I'll post it.)

Goldfish - I do think d/a pride, to the extent that I have it, is the absence of shame. And I think that, for a lot of people, that's the way they (we) experience our pride: the stubborn refusal to be less-than.

But for a lot of people, both in the queer and disability communities, I think it goes beyond that to an explicitly positive feeling about the queerness or disability itself. Frankly, for example, I wouldn't trade being queer for a second (even though I won't go that step further into queer supremacy and say that something about my queerness makes me better than all those unenlightened straightfolk). I don't feel like Elizabeth over at Screw Bronze, that I'm a better M.E. as a result of my particular constellation of neurochemical nuttery. I can't identify with her commenter, who said:

I don't want to be normal again. If I could roll back the clock two (or more like five) years to the person I was physically that would mean going back to who I was emotionally and spiritually as well, going back to how I defined myself and what I thought was important, and how I handled the relationships in my life. It would mean losing a huge chunk of my soul.

I don't have the firm conviction that my Deaf friends and colleagues do, that if there were a pill they could take that would make them hearing, not only wouldn't they take it, they'd be pissed at you for offering it in the first place. I'm taking my pills, and if you've got a better one, I want it! ;c) (I mention Deaf people here only because, a. as an ASL linguist, that's a big part of my life, and b. because there are a fair number of Deaf people who are involved in d/a advocacy despite their ambivalence about the term "disabled.")

And I do believe, as you point out, that a lot of this has a lot to do with the difficulty of drawing comparisons across the whole disability community. For a lot of people - and here I include my Deaf friends, folks like Elizabeth and Lailah, and a lot of the other BADD bloggers - disability is a better-than-neutral part of their identity, like queerness and geekiness are better-than-neutral parts of mine. I may not have chosen them, but I like the effects they've had on me, and I revel in them and celebrate them. That's the kind of pride that's about more than not-shame.

And that's the kind of pride I don't have (and which a lot of people whose disabilities are more about chronic or mental illness seem not to have). I've definitely got the refusal-to-be-less-than; but I think that to revel in mental illness ... well ... I'd have to be crazy. ;)

maudite entendante said...

By the way, Goldfish, waking up to a comment from you was like having a celebrity sighting. So cool. :)

Thanks for organizing BADD - this was my first time participating, but I followed it last year, and I really appreciate the work you (and all the bloggers!) put into it.

Anonymous said...

The difference between queerness and disability, though, is that while both obviously have elements of social construction, without them one group would still be in some sort of mental or physical pain/frustration/etc. Even if everyone accepted my depression and didn't find me inferior, I'd still have to suffer through it, no matter how much it's helped me grow (if it has). You could argue against it saying that society should just mold itself to not only tolerate but facilitate my being as a depressed person - further research, time off, free healthcare, etc. - but the depression would still hurt. I don't identify as queer so people can obviously disagree with me and enlighten me, but I can imagine that if all the social and internalized prejudice and other constructions against queerness were to go away, there's no concrete thing that's painful/frustrating.

Anonymous said...

I see some of what you are saying as part of what Eli Clare calls the difference between "impairment" and "disability." If you use the word disability to mean only the socially constructed aspects (which is just one way to use the term), then it's a little different.

So for my partner, the part where he's in pain a lot of the time sucks and he would trade that. But disability is more the part where the medications, drugs, flexible schedule, boss who is already at least minimally knowledgeable or willing to self-educate on the topic, etc. are unavailable. Oh, and the aspects about people assuming his life sucks or that having more kids like him born is a tragedy.

Pride that you hurt doesn't make a lot of sense, but pride about being a part of a community and culture that stands up for itself makes more sense.

Also, even as a queer person I find that pride is something that I both have and strive for. I have it most of the time but it's fragile and it's people with power who are able to deflate it and I feel these moments or pangs of shame. It will always be a process to fight those back and minimize them. And I think part of pride is commitment to fight that way other people organize to shame you. The aspect to which identity is in response to the way one is categorized by others is very problematic but very real.

I am glad you shared. Thank you.

WTTO

PS. You wrote, "My life is worth living. Most days, I believe that." Your powerful writing and ability to really know stuff like that is part of why I am proud to know you.

imfunnytoo said...

ME,

As I've grouched and ***tched at my own place, there are days I'm an activist and days I'm not. Days when I've been able to tell all the physical stuff "Go. Sit over here for awhile. I'm busy living." and days I absolutely can't. Even the absence of shame is incomplete because I've got one particular impairment out of five that *everyone's ashamed of." (I won't gross up the comment by mentioning it.)

I intermmittently accept the Social Model of Disability, and there are days, where I generally want to take that interpretation and stuff it down an incinerator. I honestly think it's the right one, I just can't hit it some days...

cripchick said...

for me disability pride is about so much more than my circumstance or self. it's about celebrating the values of the disability community, loving the body most think wretched, and it's about cherishing the bond and understanding i share with other disabled people. for me personally, i cannot come to a place in my life of queer pride without having disability pride.

maudite entendante said...

Cripchick - I actually had you very much in mind when I was replying to Goldfish, but I didn't want to put words in your mouth and Beth's and Lailah's were so ready to hand. But from what I've read of yours, I definitely had you in the "better-than-neutral" camp, and I'm glad I seem not to have misread you.

I understand - and share - the pride beyond myself, the pride in a community that doesn't take shit and makes things happen. I agree that, as far as I'm concerned, both the queer and disability communities are my people, for precisely the same reason - precisely that reason. But I've been thinking a lot over these past few days, trying to theorize my gut instinct that your love of your body isn't the same as any love I could feel for my depressed mind or my midst-of-migraine head, and that there really is no analogy that makes sense.

And what I've got, so far, is this. Your body is yours. Deceptively simple, but the crux of the whole thing. You love, as far as I can tell, its shape, the way it moves, the way it feels, the way it is in the world - and that is at least partly because it is yours, and you can feel that it is right, and good, and the way your body is supposed to be. (I'm extrapolating here from my feelings about my own body, which only partly match up to external feedback about what women's bodies Should Be, and I'm hoping that I've hit close enough to the mark to make this thought experiment accurate. If I'm off, I'll scrap it and start over.) In any event, that internal sense of rightness and ownership seem to play a big part in body love, perhaps especially when it comes in the face of messages that a body is unlovable.

But my mind, when it's depressed, isn't mine. Well, part of it is: the part that says, as I'm sobbing over a stack of laundry I'm too inert to wash, "I don't know why I'm this upset, it's really not that big a deal." But the depression itself is something external that's found it's way in - the leaden hand on my shoulder that's kept me from standing up to do the laundry, the voice that tells me the dirty laundry is just a reflection of how disgusting and careless and sloppy and irredeemable I am. And I'm still there, underneath, almost aware and just barely holding on. For me to love the depression feels, to me, like loving the people who tell me my body is unacceptable. Loving myself, on the other hand, is a matter of loving and protecting my own mind underneath the depression - arming the resistance, not loving the occupier. (And I bet that last phrase just got me on some watchlist somewhere. *grin*)

Does that make sense? I think that's the closest I've ever come to being able to explain why I can feel the external, community pride that you so rightly point out - as well as the refusal-to-be-less-than sense of personal pride - but just can't muster up any sort of actual positive feeling about depression the way so many people can about their disabilities.

Anyway, Miss Cripchick, thanks for pushing me to think this through more. I'm used to you making me think, but this is the first time it's happened on my own blog. ;)

(I'm curious, btw - I'm not the only Quenchista who's come out here as having a disability. Do any of the rest of you have thoughts on the topic?)

Anonymous said...

M.E. Your post was so good it brought in my favorite celebrities!

Yay!

WTTO

cripchick said...

hey M.E. : ) thanks for responding to my comment. instead of blathering on, i really want to think about what you've said and will be back in the next few days.

what you've said about my body being a part of how i've come to pride is very true, although it's only been that case as i've really become to understand reproductive justice and my queer self. will have to keep thinking on this, especially since i work within a cross-disability approach to community-building.

and just because i'm really persistent and annoying, here is a link to Mad Pride, a series of international pride events organized by people w/ mental health disabilities: http://www.mindfreedom.org/campaign/madpride

saraarts said...

Yeah, I feel like I am who I am in spite of my health issues, not because of them, and that I am only able to deal with them at all because of who I really am at core, who I have always been. I refuse to be ashamed, too, or ever to judge another person on such a silly criterion as disability. At the same time, if I could grow my leg back, rid myself of cancer, and/or restore my intellectual ability -- not knowledge or experience, you understand, just pure brain agility -- to what it was when I was 14, oh yeah, I'd totally do it!

It is interesting to me that your underground network is all women, because -- and you can call me paranoid if you like -- one of the dim little alarm bells that went off in my head when I read of the Dean urging you to be calm was the one that goes off when I think I detect institutionalized sexism. Mustn't be hysterical, you know. Must stay calm and rational. This sounds like something I've heard many times before, not just firsthand but also vicariously, rarely with any connotation of specific mental illness, always in environments largely populated and controlled by men who've been entrenched in their positions of authority for quite some time. So if you don't mind my asking, how much do you think sexism is playing into your difficulties being taken seriously?

(And for some reason this all makes me think of another post I enjoyed very much this BADD, Blogging Against Disablism Day: Sexism & Personality Disorder Diagnoses over at Smite Me! But telling you about its just the pure digression of a rambling insomniac mind.)

Thanks for a cool entry.

maudite entendante said...

Sara - oh, I absolutely think gender has something to do with it. In fact, my first thought for a BADD post was something about the evolution of "hysteria," since gender stuff is our bread and butter here in Quenchland. ;) So, actually, I'm really grateful you linked to SmiteMe - that was a post I had somehow missed, and it's definitely giving me food for thought.

When I say gender has something to do with it, I don't mean that the administrators in general view women in general as weepy hysterics unfit for grad school or the academic life. I mean, yes, institutionalized sexism is alive and well, and if there's any indication that a female grad student is not Made Of Steel, I do think the fact that she's female means she'll probably be cut less slack. Depression, of course, is a pretty good hint that one is not Made Of Steel. ;) So yes, I do think the specific way in which the dean reacted to my depression was related to my gender, but I also think that what he was primarily reacting to was the depression. (Not that I think I can ever tease it out completely, or that I need to. Intersecting oppressions and all that.)

I know that's not a satisfying answer; are you willing to consider it a place-holder until I've tried to work this out more? ;)

It's always seemed that the biggest reason why my network is made up of female grad students is that they're the ones I know and the ones whose trajectories have been closest to mine - including the same student-health-center clinicians, the same divisional deans, the same overall manifestations of depression, and roughly the same time entering the program. I have a few male friends who have also been navigating the school mental health-care system, but they're either several years ahead of me (and thus not expected to take classes or show up to campus regularly), or they tend to be insomniac rather than hypersomniac (and thus on different meds), or in different academic divisions (with different administrators), etc. It may be coincidence, but we women have just sort of clustered together.

(Shoot, now you're making me get all Agent Mulder! The word "coincidence" there is making me squirm! *grin*)


CripChick - thanks for the link. You're persistent, definitely, and I'd even go so far as to say pushy, if you'll permit me to pay you that compliment ... but annoying, never. ;) I look forward to any further thoughts you might have, and you can be sure I'll keep trying to pinpoint mine.

saraarts said...

Oh, please, I think this is a great response -- thoughtful, not glib or knee-jerk.

Your blog is new to me. (Thanks, BADD!) I will be back to see what else you have to say on this and other topics.

Cheers!