Disability advocates embarrass me. There. I said it. I know they shouldn't; I have learned well the societal notions of helpless, bitter gratitude, but I am also not so dead that I don't wish ninety percent of them would spontaneously combust or dissolve into primeval goop.
I know their hearts are in the right place, but frankly, most able-bodied disability advocates repel me on a fundamental, atavistic level. Their eye-level presence in my waist-level world is jarring and often threatening, and to be blunt and likely ungrateful, I question their motives and sincerity. When I look at an able-bodied advocate, elbow-deep in political gladhanding and purporting to speak on my behalf, I seldom see their good intentions. Instead, I see earnest condescension and a desperate, selfish desire to "fix" me and my kind rather than address the uglier underlying social issues at work.
To be sure, this jaundiced assessment is not always fair. I'm sure that there are countless able disability advocates who truly want to speak for me, but too often, those who claim to speak for the disabled--doctors, parents, social workers, etc.--end up advocating on behalf of everyone else. My wishes, desires, and needs are sublimated by and for the convenience of everyone else. Support groups focus on helping caregivers "cope" with us, as though we were a terrible plague to be borne with saintly, Christian patience and not a collection of individuals with wills, ideas, and dreams of our own. By contrast, there are very few groups dedicated to helping us, those who "suffer" most from disability and its accompanying ignominy, confront and overcome the countless obstacles we face each day--the prejudice, overt and implicit, the simple ignorance, and the blunt, rage-inducing despair of a clogged toilet in the handicapped stall, a broken elevator, a curb, or the simple stark knowledge that while everyone else has a fighting chance for survival if a fire breaks out on the second floor of a building, my survival depends on whether or not the firemen find me before the smoke does. Because the elevators turn off when the fire alarm is triggered. For safety. And for me, there is no fire ramp, designed to send me plunging from the window to bumped and bruised safety below. There is only one way, and for those of us with wheels under our asses, that's no way at all when the alarms blare.
I am confronted by the possibility of my mortality every minute of every day, am keenly and unrelentingly aware of my precarious position on this mortal coil in a way the able are not. Sure, everyone has moments when they glimpse the ephemeral nature of life. Existential angst is a universal pang. Even the most slack-jawed dullard realizes that sometimes things and people go away and never come back. For most folks, though, that realization is fleeting, goosebumps or a shiver down the spine. Few worry every time they enter an elevator that it might be a fatal mistake.
Of course they don't. They don't have to.
Such fears are beyond the scope of abled understanding, and so, when I turn on the TV or log on to the Internet and see righteous crusaders protesting the use of the term "retard" in Tropic Thunder and couching that protest in the guise of "increasing awareness" or "making things better for the disabled community", I become squinty-eyed, suspicious, and angry.
Ironically, I'm not angry at the use of the term "retard". I'm angry at the so-called arbiters of the disabled voice who thought this cause was worthy of indignation, censure, and the expenditure of energy above all others. Rather than roar in mighty wrath at ineffective, indifferent health care, slim job opportunities, and even slimmer housing opportunities, they've chosen to wave signs and placards denouncing the use of a word so enmeshed in the American lexicon that its meaning has changed three times, from "to impede" to vicious slang for "mental retardation" to "wow, aren't you a fucking idiot?"
Go fuck yourselves, the smarmy, self-satisfied lot of you. You aren't doing the disabled community any favors; in fact, you're doing us a huge disservice by portraying us as shrill, hypersensitive fools with too much time on our hands. You aren't helping, and you certainly aren't enlightening anyone.
You want to know why? Because you can print all the brochures and produce all the educational filmstrips you want, and you could leave them all over the city like Chick tracts...
And it would make no difference. Unless it directly affects them, people won't care. And even if you could get them to read it, it wouldn't tell them a tenth of the truth, because unless you've been there, unless you've rolled into an elevator and wondered if you'd be coming back down, unless you've listened to your doctor and your mother decide what to do with your body even though you were above the age of medical consent, you can never know what it's like to be one of us.
Shut up. Stop talking. Start listening. The disabled community isn't angry because some boner-headed scriptwriter used "retard" in his script. We're angry that we can't find homes, jobs, or decent medical care, and we're angry that the care we can find is doled out by a miserly, ignorant public who derides us as freeloaders on the one hand and vigorously opposes programs to foster greater social inclusion and economic opportunity on the other. We're tired of being told we should be ashamed of our audacity to live, of being told we should do more for ourselves, and then being denied the chance to do just that by getting a job that doesn't involve rolling quarters while matrons from Easter Seals look benevolently on. We're tired of being denied a job because of the $2.72 it would cost a business to put a handrail in the bathroom. We're tired of being told we're too expensive to employ, too expensive to live, of being shamed when we accept the government check because there is nothing else but a guilty face and a closing door.
Frothing at Ben Stiller because he said "retard" won't change a goddamn thing. Even if you do-gooders manage to eradicate the word from the unwritten Miss Manners' Guide to Words You Can't Say in Public, there will be another. And another. If you got rid of all known pejoratives for the Waist-Level People, it wouldn't take long for new ones to be invented. You've changed the word, but you haven't changed the ugliness and ignorance that spawned it in the first place. Whether society calls me a "retard" or a "high-needs individual", it still considers me lesser. Less than valid. Invalid. Less than human. If it didn't, the U.N. wouldn't have felt a burning need to unveil a Disabled Bill of Rights in 2005. As though the Bill of Rights of the Constitution and the Equal Rights Amendment that guaranteed(redundantly, goddammit)women more of the same were rendered null and void by dint of my disability.
So, take your protest and your placards and shove them up your asses. This protest has nothing to do with us disabled folks and everything to do with salving your guilty liberal consciences and getting yourself some face time until the next MDA telethon, when you'll drag us temporarily into public view to bilk tarnished pennies out of old people trying to get right with God before His chariot swings low and mows their selfish, old bones down.
I'm not interested in being your Jiminy Cricket or your educational tool or your absolution for the brother you don't talk about or the resentment you feel because your Better Homes and Garden life was upended by a gift that got a little dented on its way from Heaven.
That's your problem, not mine, and I never claimed to speak for you, so I've no interest in solving your problem.
In case you haven't noticed, I've got more than a few of my own.
A few days later, she had this to say:
I'll post links to my eligible CSI:NY fic tomorrow so that anyone who wants to can nominate it for the [info]csifanficwards 2008. Right now, I'm too exhausted with the effort of trying to explain the realities of this gimp's life to an outsider to care. Like I said in a previous entry, you cannot presume to tell any disabled person how they should feel unless you've been there, any more than a white person can tell a person of color how it is or a straight person could dictate the Whole Truth to a gay or transperson. It's presumptuous, officious, and aggravating as hell, and even two sorties into their able-centric world is enough to sap a Rolling Warrior of their will to fight. It's like felling a redwood with your teeth. Unless you're a beaver, it won't work.
I'm not angry that this person challenged me; debate is healthy. But I am tired and frustrated because I can't seem to articulate the source of my angst effectively. Each time I try, I'm met with an organized barrage of Google Fu.
I think the miscommunication stems from the fact that my opponent in the jousting match is operating with an entirely different experience set then I am. She's been a biped from birth, and as such, she can relate to the disabled experiences only as a secondary observer. She's never experienced the First(and maybe only) Universal Truth of Crippledom: The carer/limper relationship is inherently unequal. Forever. And ever. No amount of sensitivity training and government funding will change that. You could give every limper a carer and pay that carer a million dollars a year, and the inequality would remain.
Not because carers are evil, power-mad asswads, but because the able person will always assume a dominant role over the disabled person. The disabled person needs the able one; the reverse is seldom true. If the carer doesn't like the client, they can leave, but if the client is unhappy, they're faced with the daunting proposition of finding a second(or third or fourth) person on the face of the earth willing to wipe their ass or insert their tampons. Good luck with that. As a result, many disabled folks think long and hard before raising a stink, and most don't because they're afraid The Authorities will "step in" and force them into a group home, thereby stripping them of their scant independence.
When your whole life is lived in such deeply-rooted inequality, it is nigh impossible to function as an equal in society. How can you when your toileting schedule is determined by the availability and willingness of someone else to help you? And words will never describe the depth of that humiliation, even if it is your mother.
So, while it's wonderful that there exists the British Council for Disability(and it is, even if it does me no good as a Yank), it doesn't do squat to address the deeper issues of the psychological damage inflicted by a life as a lesser being. I'm thrilled that there are councils to help me get a job rolling pennies for the food bank and groups to keep my carer from drowning me in the tub in a fit of rage, but what I and many others need is a place where we can vent our frustration and get an answer that doesn't boil down to, "Well, what's wrong with you that you can't accept being crippled and all the indignity that entails?"
What I need is a Staples SMITE button that would put this nasty shoe on the abled foot for a week. Then we'd see how much they'd just have to accept., which was followed by [snip]
So, I've always been careful about letting it all hang out when it came to both the internal and external struggles bundled with my handicap. I knew that some folks, even those who've interacted with me for years in the virtual metropolis, might flip their shit if I let slip that I was often angry, frustrated, and resentful with the world. People Who Are Different or Struggling are not supposed to be angry or express unkind, secret thoughts. They are supposed to bear up with dignity and be an Inspiration.
If they do anything else, if they stumble, they risk their every wart, pimple, and human foible coming back to bite them in the ass.
I'm tired of my every attempt to explain and examine my complicated emotions as a disabled person being dismissed as delusional railing and pointless anger, paranoia and the joy of misery. Every other oppressed and struggling group on the Internet is encouraged to speak out, to let their voices be heard. The LBGT community is encouraged to tell their stories, to unite in a supportive environment. Hell, an openly gay man in fandom might as well sit down and wait for temples to be erected in his honor. Blacks and Latinos are encouraged to form communities and discuss the [insert minority group here] Experience. Abuse and incest survivors are rightly lauded for their bravery. People with eating disorders are told they can find support here.
Disabled folks? Not so much. While we're appreciated as a quaint novelty, we're in the steerage with the cutters and the kohl-snorting emo children when it comes to expressing angst or anger. And if we persist, well, it won't be long before the cries of "Being disabled, you're doing it wrong!" ring out, along with accusations of whining, pity-whoring, and delusion.
There is no winning.
Because I'm tired of people I trusted lobbing charges of cowardice, delusion, petty spite, and gleeful cruelty at me whenever my so-called frankness and clever sarcasm suddenly become unfair and mean(which, coincidentally, happens as soon as it's no longer somebody else on the receiving end), I've got to decide whether or not it's in my best interests to discuss anything other than fannish interests and creations in this LJ.
Nothing is certain. In fact, I suspect that entries discussing my disability or my thoughts on yaoi or anything unrelated to TV, music or fandom will be filtered. That way, people who are butthurt by the notion that I'm not a virtuous invalid incapable of anger or unreasonable emotion don't have to be confronted with my naked, dirty ass if they should happen to glance into my bathroom.