Losing my religion, part 2

The doorbell rang early in the evening and my mom went to answer it. It was shortly before Christmas. I was 17. We were making cookies and within minutes I planned to drive to a friend's house and pick her up for an evening of knocking about in search of random fun. Like teenagers do.

But my mom returned to the kitchen and said to me with dismay, "It's for you."

Outside the front door stood Christmas carolers from our church youth group waiting to sing for me. Not for my family (all members of the church), nor for my sister and me, but specifically for me.

I'd chosen not to carol with them that year (likewise my sister), but I'd gone the year before and recalled how we'd begun with a list of elderly church members, most who didn't leave home anymore during icy winter days. I remembered we'd been asked if there were others we wished to carol, with invalids getting special preference. The theory, I suppose, is that "shut-ins" need extra holiday cheer.

Unaccountably, I'd now made the list.

They sang three songs -- the last was my favorite Christmas hymn. My youth group peers had known it was my favorite from the thoughtful personal discussions we'd shared in confirmation class, and I guess they thought that would be a special treat for me. But we'd talked as equals in class and here I was cast as the subject of their benevolent generosity.

As I watched them sing I wished their visit was somehow a silly joke, a tease to a good friend who failed to join them in their caroling fun. But none of these people were my close friends and their visit was utterly sincere. When they'd made the list of who to go sing songs for, my name had obviously been raised as a person in serious need of holiday cheer -- as an invalid, I guess -- despite my presence with them every weekday in school and long hours most days at after-school activities.

At the end of the third song, the carolers presented me with a little plate of Christmas cookies which were really quite similar to the cookies we'd been baking when the doorbell rang. My mother and sister -- in an act of family solidarity -- returned the gesture by giving them a plate of ours. I smiled grimly wishing I was already driving across town in my mother's sportscar. Would they have sung to the rest of my family if they'd arrived fifteen minutes later? Would cookies have exchanged hands? I honestly don't know.

I'm thinking this out as I go. Part 3 to come.

Losing my religion, part 1

When I was in tenth grade I was confirmed at a United Methodist church in suburban Chicago. My family had lived in Illinois for about three years at that point, I'd had two years of confirmation preparatory classes, and I'd been using a wheelchair for less than two years. A few weeks before confirmation, there was a weekend canoe trip to northern Wisconsin that, in retrospect, it is pretty impressive that I participated fully in.

I don't really recall details of the camping in tents or the complications of peeing in the woods, though I'm sure that felt adventurous at the time. It was completely inaccessible terrain and I needed help to function out there. I expect my very helpful twin sister remembers those details all too well.

What I do remember vividly is my canoe getting lodged atop a big rock in the midst of a daunting set of rapids. Neither I and my paddle-mate nor the more experienced canoeists who tried with successive float-bys could knock us off our perch, so the decision was made to help me abandon the canoe and use two good swimmers flanking me to insure I got safely to shore. We all had life-vests, of course.

"Don't let my face get in the water," I told my pastor and the other man just before I was dragged into the river and we headed for shore. The water was fast and icy cold, and there was undoubtedly considerable pressure to, you know, not let me drown while under their care. But all of this went very well, the men swam me to shore, and after lunch we continued down the river. The trip ended happily.

So I was surprised that Sunday while the confirmation rituals were afoot that my pastor retold this tale. He repeated for the congregation what I'd said and it became a little parable of faith how in a life-and-death moment I had only asked that my face not get wet. It was an example of how ready I was to commit myself to the church. It was a touching moment for everyone but me. I had been completely misunderstood.

My directions had been utterly practical. I couldn't swim and couldn't be certain I would be able to hold my head out of the water unless they carried me in a particular way. If I sucked in too much water they would have a crisis on their hands, so in the simplest terms possible I told them what I needed from them. Faith never entered into it. I considered it my responsibility to help them assist me. If I had chosen to say nothing and it had caused them to not help insure I could breathe, that would not have been called a lack of faith. It would have been called a tragic lack of information. ("I had no idea she couldn't hold her own head up. And who knew you could get pneumonia so easily?")

Yet my pastor interpreted my words as proof of a childlike faith worthy of praise and appreciation. And I believe my status as the "girl in the wheelchair" fed this perspective, and it certainly was the reason I was singled out as the teen to relate a story about to the congregation. That sort of attention goes with being disabled and it's the sort I learned early had little to do with seeing who I really am as a person. Frustratingly, an event that should have been about spiritual and community affirmation left me feeling invisible and misunderstood.

There was another similar event later on that same year. But I'll get to that another day.

Saturday slumgullion

• Marta Russell on the Medicaid kill-off: "The cut is clearly an attack on poor people, and it may wind up killing disabled and chronically ill persons before all is done. It is also a strike from those segments in our society who wish to dismantle the entire Medicaid system. Worse, it will force a rollback of disabled people's civil rights."

• Kelly Laird at Life is Full: "A few weeks ago I was at a convenient store, looking for my favorite flavored sport drink, when I noticed the reflection of a man standing behind me, getting an eyeful of me. I slowly held up my hand, keeping my back to the man, and shot the bird at the guy, then turned to look in his direction and smiled, so as not to start a fight. He smiled, too, didn't say anything, and I rolled off with the fruit punch."

• "It could be worse, you could be one of Jerry’s kids."

• In Tennessee, disabled protestors are fighting state funding cuts that will send many of them to nursing homes in order to receive the care they currently get in their own homes. In Louisiana, The Times-Picayune reminds us with a five-part special report on nursing homes how institutionalization can and does kill. Also, it's big business: "Nursing homes get 94 percent of the money [Louisiana] spends on long-term care for the elderly, compared with 70 percent nationally and less than 50 percent in states such as Oregon and Washington."

• Minnesota storyteller Kevin Kling on The Ugling Duckling and other myths: "When it turns out he's a swan like all the other swans and not a duck, what's that do for me?"

Movie review: Stevie

I rented the 2002 documentary Stevie (by the director of the acclaimed Hoop Dreams) based on the review by Flea over at One Good Thing. It's a heartbreaking, riveting trainwreck of a story that's not at all about disability, though disability is subtly present throughout the film in various ways. Here's one aspect that Flea picked out (but go, read the whole thing here):

I can't remember ever seeing a movie character as full of grace and class as Kim [actually named Trisha]. She was a total Grace Kelly, so full of poise and self-confidence, willing and able to speak her mind and vehemently disagree, but with such graciousness one could not be offended by what she presented as truth.

What really got me the most was Kim's masterful use of subtext during this entire scene. I played this scene endlessly on the dvd player, because it's not often you're in the presence of such a pro. Because here's the thing about Kim: she is very, very disabled. Can't walk, doesn't have good control of her hands and arms, speech slurred to the point of being unintelligible. All her dialogue was subtitled, or we'd have missed it. It's entirely possible Stevie missed most of it. What she didn't say was that whatever fate struck Kim that cost her the use of her body, that was a miniscule impediment to her marriage plans next to the damage done at the hands of her stepfather. Her disability wasn't even worth mentioning next to that. What she only implied was that even if she looked like Giselle, it wouldn't matter, because her ability to be intimate with a man was destroyed.

I've never seen anything put into perspective that clearly.

Stevie's life and relationships -- and the relationships of those close to him -- are intricately explored by the camera that follows them around. His girlfriend and the woman Flea describes both have disabilities, though the girlfriend's is less impairing. Rather than narrate anything about either woman's impairments, the documentary joins them in their lives and lets action and subtext provide the details. It's rare that real disabled people (women, at that!) are present on film without the content of the scene being all about their tragic disabled lives.

There is plenty of tragedy to go around though. Stevie's childhood was filled with abuse, abandonment and neglect. Even whatever special measures were taken to reach him in school left an indelible mark, which is eloquently, if violently, expressed in his vulnerability to ableist playground insults as an adult. Of his sister, the twentysomething Stevie says:

We have our differences. I was gonna knock her in the head out beside the garage because she called me "retarded." I was gonna knock her in the head with a claw hammer. You just -- some things you just don't say. And that's one of them things -- I just don't like that word.

The documentary isn't about Stevie's education or IQ -- he's obviously an intelligent, sensitive and deeply troubled man. But when most media, most films and entertaiment (Jon Stewart's The Daily Show, for example) still use "retarded" as a humorous insult without any apparent recognition of the history of oppression behind the epithet, it's noteworthy that this moment of Stevie's made it into the film. Such quiet representations of disability in the documentary make it unusual and worth a look, but the story as a whole is also haunting and powerful.

Disability studies "mucks up the dichotomy"

Frequently, I forget that disability studies and disability rights are not widely understood ideas. Ever since high school, when I vicariously found fellowship for my emerging identity as a disabled person through the study of civil rights for blacks, I have translated as if from another language the parallel experiences of other oppressed groups into something relevant for me. (That's perhaps a selfish way for a sheltered white girl to learn about race relations, but that's a topic for another day.) I forget that although the parallel is obvious and clear to me, most people have not yet seen or are resistant to accepting disability as a political and social identity.

So news articles that trumpet the new field of disability studies often irritate me even as I'm thrilled to see more recognition. Coming early to the party usually does make the evening seem long. But that's my problem, I suppose.

A recent article in the Village Voice frames disability studies' emergence within the framework of 2005 politics:

Lest America divide too neatly into red/blue, NASCAR/latte blocs, one constituency can be counted on to muck up the dichotomy. People with disabilities defy political pigeonholing. The group considers itself an oppressed minority, and its civil rights agenda grew out of 1960s radicalism. But on issues such as euthanasia, disabled people find themselves allied with "culture of life" enthusiasts. As disability activist Simi Linton says, "A lot of disabled people justifiably feel vulnerable to ideas held by their family and the medical establishment that our lives are less valuable. . . . That is why I'm categorically opposed to physician- assisted suicide, because I think some people are more likely to be assisted than others." For secularists, this argument is a bit harder to dismiss than "because God said so."

What follows is an excellent brief on the challenges disability studies presents to academia and vice versa. But my favorite bit in the article is author and activist Simi Linton's description of the annual SDS (Society for Disability Studies) conferences:

Linton... describes these conferences as "quite chaotic. You've got 50 people who use wheelchairs, you've got blind people with dogs, you've got deaf people with interpreters. . . . And we all sort of move to accommodate each other. It's a powerful experience for outsiders coming in for the first time."

It is a powerful experience, indeed. I attended two conferences in the late '90s and found them life-altering events. From the moment the paratransit driver picked me up at the Oakland airport and informed me that he'd been ferrying "my people" around all day, I knew I would participate in something I'd never quite seen before. Oh, I'd met "my people" before. I'd been to gatherings of disabled students at my university. My twentieth birthday included dinner for four at a fancy restaurant, where we requested only one chair at the table. Being with other disabled people was not then new to me, though it would have been in high school when I was new to my wheelchair. But I'd never been to a gathering of educated disabled professionals discussing disability, and I'd never heard a nondisabled person refer to disabled people as "my people" before.

No doubt part of what is so startling and exciting about an SDS conference is the camaraderie. More than one or two visibly disabled people gathering in public often feels subversive; dozens gathering together to discuss disability culture and experience definitely holds some joy. Beyond that, the spirit of interdependence and determined commitment to accommodation in all its necessary forms suggest to me a model of what all of society should be. And not just in terms of disability.

Some might view a typical question/answer segment of a panel presentation at a SDS conference as a logistical nightmare. After all, the panel and the audience both likely require multiple simultaneous accommodations in real time. The audience might need to rearrange itself a bit for someone to reach a microphone and ask a question -- wheelchairs shift, service dogs resettle. The question is translated into sign, close captioned, and possibly translated into French or some other language, as well. All of this occurs for the answer, and the next question-and-answer too. The day, the whole weekend goes on like this. If you haven't been to a disability rights/studies conference this is likely something that you have never seen.

With so many variables to communication and full participation of everyone in the room, the possibilities for what might happen next -- and any point in the meeting -- become endless. It's dynamic, chaotic, and requires a basic a priori acceptance of all difference and subsequent needs. The alternative would be to spend precious time debating who deserves what kind of help and how much they're entitled to have, and really, the U.S. Supreme Court does enough of that for all of us. So, everyone's needs are valid because they say they are, which is unheard of elsewhere, when you think about it.

But the "logistical nightmare" is really an opportunity to view community in a whole new way. Like democracy, patience is required. And a sense of humor, to be sure. But mainly, there's a remarkable sense of acceptance -- not of people's odd bodies and their differences, although that is there too. (That's medical model thinking which is exactly what disability studies attempts to uncover and think beyond.) There's an acceptance that difference fuels the process, feeds it with ideas even as it challenges and complicates. If the multi-cultural global community needs models for how to get along, an SDS conference isn't a bad one. In addition to the topics discussed being about

Special ed racial imbalance spurs sanctions

From The Washington Post:

Blacks make up one-fifth of the student population in both Montgomery and Anne Arundel county public schools. But they make up two-fifths of the group labeled mentally retarded.

The two Maryland school systems are among five that face state sanctions because they steer too many struggling black students into special education with problems that, in a number of cases, could be addressed in a regular classroom, according to federal education officials. Starting this
summer, the systems must spend a combined $8 million a year on efforts to reduce the number of black students in special-ed.

Young black students with academic or behavioral problems tend to wind up in special education, educators say, based on a teacher's impulse to place such children where they will get the most help. Special-ed classes are staffed at a far lower student-to-teacher ratio than regular classes.

But some black parents and others have accused school systems across the country of using special education, a federally subsidized program tailored for children with documented disabilities, as a dumping ground for disruptive black children. The Education Department found that, in 2003, although about 15 percent of all students ages 6 to 21 were black, they made up 20 percent of all special-education students and 34 percent of those labeled mentally retarded in
that age range.

More statistics:

The five counties were cited because black students were overrepresented in three areas of special education: first, the counties had a disproportionate share of black students in special-education as a whole; second, blacks were disproportionately likely to be placed in separate special-ed classrooms rather than "mainstreamed" with the general student population; and third, blacks in special education were particularly likely to be suspended.

Eighteen of the 24 school systems in Maryland had "significantly disproportional" shares of blacks in at least one of the three areas, according to state data.

Blacks make up 22 percent of the student population in Montgomery County. But they make up 42 percent of the population considered mentally retarded and 36 percent of special-ed students taught in separate classes, and blacks account for 52 percent of suspensions among students with disabilities, according to enrollment counts taken in October.

Via Disability Law