My very own Nurse Ratched

It's funny what sticks in your mind about a person and becomes either a lovable quirk or a trait you will never be able to stand wherever you find it again. I've recently developed a strong aversion to the phrase "just a titch," which was always a bit dubious but now makes me want very badly to slap the person who says it.

There was this nurse -- I suppose there was bound to be one, since 12-hour shifts for four months equals 240 nursing opportunities to meet someone not even a mother could love. Here's what she liked to do: Knowing I couldn't speak because of the ventilator* and couldn't escape her for the duration of her shift, she liked to put her face down close in front of mine and loudly ask personal questions that were none of her business.

"ARE YOU SAD?!"

It takes a special talent to violate someone's personal and emotional space with such a simple quetion. Yet she had the knack.

When I didn't answer (I was busy contemplating what the correct "fuck-off" response is to someone whom I might have to ask to wipe my ass within the hour,) she began to lecture me about "bucking up" and "this too shall pass" and all that. "Sad" really wasn't an issue so much by this point as, perhaps, "livid."

She stirred up my mild-mannered Minnesotan parents too. They came to visit that Sunday hoping we'd immerse ourselves in the benign weekend hospital limbo you get if nothing too urgently worrisome develops. It's a sort of boredom you feel lucky about.

Instead, this woman began asking questions about my future, and then stating that what we (the doctors, my parents and I) had decided was all wrong. She challenged my parents to come up with a new plan immediately. Right now. What's it going to be? Huh? Tell me.

And then there was the ventilator weaning. That's where the settings are changed so you have to begin doing the work of breathing instead of the machine. Over days (or weeks or months) you wean for longer times with less and less assistance. On that Sunday, when I became exhausted sooner than Nurse Ratched felt was appropriate, she exclaimed, "I cannot in good conscience allow you to quit yet!"

It was one of these comments -- I forget which -- that made my mom the angriest I've ever seen her. Since Mom is an only child, I don't think she's smacked anyone in her entire life, but I really expected her to lay down the smake that day. Well, I was hoping she would.

That didn't happen. The end held little drama at all. My dad tried to have a calm discussion that might relieve the tension. Mom left the room. Nurse Ratched went to write something about me in her charts. And I tried to be satisfied with just giving her the bird or sticking out my tongue every time she turned her back. Childish, I know. Did that make me feel any better? Oh, just a titch.

__________________________________________________

* A person can speak while using a ventilator, but it requires pratice. Speaking usually involves either a special type of trach or valve, or lowering the cuff that routes air from the vent downward into the lungs and allowing air to escape out past the vocal cords as you exhale (so the lungs can use the air first). The latter usually compromises the set amount of air the person gets, so it can be tiring.

New links added

I've put several new links in the sidebar list of disability blogs:

• Diary of a Goldfish
  

• The Perorations of Lady Bracknell -- on the fact that we're everywhere

• Where the Cornflakes Are -- with her own example of how doctors can be twits with disabled people

Blogging Against Disablism Day - 1st May 2006

Diary of a Goldfish started this. Anyone can join.

Been down so long it looks like up to me

When I began my recent three-month stay at a rehab hospital I came from a month in an ICU. I arrived by ambulance on a gurney, attached to a ventilator, with both a feeding tube and PIC line. I'd spent very little time out of bed and hadn't so much as had a drink of water by mouth in four weeks. It was all pretty grim, but the point of my transfer to rehab was that there was plenty of room for improvement, even for a gimp like me.

My assigned primary doctor at rehab was bubbly and optimistic. At our first meeting she suggested I consult the in-house psychiatrist and be prescribed an anti-depressant.

"Show me someone who can't walk," she said, "and I'll show you someone who's depressed."

That's what I get for consulting an expert -- I had no idea that I've been clinically depressed since 1983. I thought my current anxiety was because, you know, I'd been in a month-long medical crisis and still wasn't breathing or eating on my own and all this was new and alarming to me. Or, perhaps, the experience of near-constant discomfort and pain had unnerved me just a little bit. Nope -- the inability to walk has apparently been the emotional ruin of me since I was fifteen. (Gimpy Mumpy writes here about the aggressive tendency of the medical establishment to prescribe psychiatric pharmaceuticals to disabled people on the grounds that we can't possible be stable or content.)

I wanted to ask the doc if she'd read my medical records and knew I'd begun this current medical crisis from a permanently seated position or if she was actually that bubbly and optimistic that she planned to cure me of uncurable pre-existing conditions too. I've little interest in any form of that myth and certainly not from any doctor caring for me.

Maybe her image of a rehab patient didn't allow for already-disabled people getting sick. Maybe her physician God-complex was running amuck. Maybe she was just a loon. But maybe the cultural default image of a person being bodily "normal" didn't allow her to register the facts plainly in my medical files. Files she finally told me she had read. And certainly she didn't understand at all how her statement denied a lifetime of who I am.

John Hockenberry, in his autobiogaphy Moving Violations, tells of a mishap with a city bus that cut too close to a street corner and caught his manual wheelchair where he sat on the sidewalk. He dove clear of disaster, but his chair was mangled under the bus. As people ran to help and he calmly told them he was fine but wasn't getting up because he couldn't walk, they were unable to piece together what he said. Being already disabled wasn't a logical possibility to them, even with the wheelchair in evidence.

That's just how invisible disabled people are: we can't possibly, really exist. (Unless, of course, you poke us in public with rude questions to assure yourself we're real.)

Back to Dr. Perky. What pep talk does she give to her patients seeking rehab because of permanent paralysis? Does she tell them they will never be happy again because of their new injuries? And is their dosage higher than mine?

Self portrait for some 3rd grade friends

On this long hiatus

I haven't written a word here since August, but my recent distractions have been compelling. I've been in hospital since early November -- ICU for one month and a rehab hospital for the other three months. I got home yesterday.

Although I've used a wheelchair or electric scooter since 1983, my life has utterly changed from this recent illness. What began as a horrific stomach ailment and turned into pneumonia has also left me with a feeding tube in my stomach and full-time ventilator use through a trach. I've arrived home to round-the-clock nursing care and much hope that this will get easier either through further recovery or habit and acceptance.

I've also got a lot I could -- and do hope -- to say here about my experiences in hospital and with insurance companies. And there's that Part 3 of Losing my religion to write, the point of which has significantly changed due to my recent adventures. I do hope to get back to it now. Thanks again to everyone who has given their support, even those who just wondered what was up with my blog being silent.

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

Blogroll update

I've added quite a few new links to my blogroll lately. The bottom half is mostly nondisabled online feminist friends I like to keep tabs on: Who can resist the culinary wonder that is Knife-Wielding Feminists? Or information all about lizard shit from my friend Zoe?

But back to the crip stuff:

• Edge-Centric, the new blog by Mary Johnson, editor of Ragged Edge, already has several must-read musings about the disability experience. I'm particularly happy to see her ranting a bit about the failure of popular culture and the general public (and the Supreme Court) to see disability bigotry and discrimination as a parallel experience to racism. It's a nail I've thought lately needs to be hammered at long and hard.

• The Adventures of Gimpy Girl hasn't been updated in a couple months, but perhaps that's because the intrepid traveler who writes there is off to parts unknown. Behold beautiful pictures and commentary that make me greedy for more.

• Blind Chance is an audio blog. There's some fascinating stuff in the archives that I plan to spend some time with, partly in hopes of keeping this blog as accessible as it can be.

• Disability is an Art... is a new endeavor by Scott Laurent based on some crip culture statements by Neil Marcus. Marcus has said that disability is "an ingenious way to live."

Tennessee sit-in reaches day 38

I don't know why I haven't written about this here before. This started back in June. They've been there for the last five weeks. They spent the Fourth of July weekend locked in the Tennessee Capitol building, accompanied by a vigil outside. The governor has denied further food or water be brought in for the protestors. Still they persevere because they're fighting for their lives.

Read about it here. See the pictures. Email Governor Bredesen of Tennessee and tell him not to cut TennCare.

I can't imagine how weary and disheartened I'd be after over a month sleeping on a marble floor. Never mind -- I couldn't do it. It would endanger my health, as it no doubt does many of these determined people who fight to save their health care services, and for some, their right to live freely in their own homes.

Have you heard about this in your newspaper or on your local tv news? How about the national news? If not, why not? They've been living in the state capitol of Tennessee for 38 days.

Happy 15th Birthday, ADA!

From Tivka at No Pity:

I am not going to try to tell you that the ADA is perfect, that it meets all of our needs, or that it is as strong now as it was 15 years ago. I believe earnestly that unless this country fights for this law, it will die. For those of you who do not have a disability, this is also your law. If you are ever perceived as having a disability, and treated badly as a result, this law covers you. If you intend to get old before you die, this law is your protection, because anyone who lives long enough WILL develop a disability. One in six people in this country has a disability, and that number is rising. This is a good thing; this means we're living and not dying. You may feel that I am being melodramatic, but without this law, people will die. This law provides for access to health care, groceries, and basic communication. This law means that a deaf person can reach 911. It means that a woman using a wheelchair has a hope in hell of having breast or cervical cancer diagnosed in time to save her life. (We're working on that, but we at least have the legal basis for it). It means that when you're 70, you won't be confined to your house. At least ideally, that's what it means. The movement is, as always, a work in progress.

A review of a book about the ADA at Ragged Edge:

Yes, activists cheer the law -- but what they're cheering is the law that passed in 1990, and as reflected in a rich legislative history. That's not the ADA as interpreted by the courts and media, which is quite a different thing.

ADA legal scholar Ruth Colker, in her new book The Disability Pendulum: the First Decade of the Americans with Disabilities Act, gives two cheers for the ADA as written, but none for the law as interpreted by the media and the courts. Both of them, in her analysis, have given a very good law a thoroughly unfair drubbing.

Also, for more ADA coverage, Sam at Disability Law has the links.

Disability activists blast PBS for ADA anniversary promotion of 'better dead than disabled' film

This press release from Not Dead Yet:

Forest Park, IL, July 25, 2005 -- In an all-too-common feat of cultural insensitivity, PBS has chosen July 26th, the anniversary of the signing of the Americans with Disabilities Act (ADA) to air POV: The Self-Made Man. The documentary features the videotaped statements of Bob Stern, an elderly man deciding to commit suicide rather than face possible disability, medical uncertainly or complications.

"The choice of this particular air date is an affront to people with disabilities in this country," says Diane Coleman, president of Not Dead Yet, a national disability rights group based in Forest Park, IL. "It's the 15th anniversary of the signing of the ADA, a law that is, for people with disabilities, the nation's largest minority, what the Civil Rights Act of 1964 is for people of color. Not only is this being ignored by PBS, but the network is featuring and promoting a program about a person so terrified of aging and disability that he commits suicide. In terms of sensitivity to diversity issues, this puts PBS in the same league as the Fox News Channel. And, no, that is not a compliment."

Stephen Drake, research analyst for Not Dead Yet, notes that the film is a slanted portrayal of the broader issues. "Normally, we don't comment when a rich, privileged guy decides to take his own life. We didn't comment when Hunter Thompson shot himself. After all, Thompson wasn't asking for a change in the law, a permission slip, or help from anyone."

Drake says the situation is different with The Self-Made Man. "It's being promoted as a tool for adding to the public discourse in regard to assisted suicide, an issue confronting the U.S. Supreme Court and legislators in California. Whether society will treat some suicidal people differently than others is a public policy issue. The film, however, frames the issue as a dispute between religious conservatives and those who 'believe in autonomy'. "

Coleman and Drake say this ignores the fact that secular disability rights groups have been at the forefront of opposing legalization of assisted suicide. Twelve national disability groups filed an amicus brief supporting the Attorney General in the Gonzalez v. Oregon case currently before the Supreme Court.

Moreover, disability opposition is well known to the official "advisors" to the documentary. Three out of the four credited advisors to the program are long-time assisted suicide/euthanasia advocates: Paul Spiers, former board Chair of "Compassion and Choices;" Margaret Battin, advisory board member of the Death with Dignity National Center; and Dennis Kuby, former regional director (California) of the Hemlock Society. These "advisors" could have advised a truthful portrayal of the policy debate, including disability opposition. "Obviously, balance is one thing producer Susan Stern wasn't looking for," says Drake.

Housing discrimination on the rise

This news story about a Cape Cod woman trying for the past two years to find affordable accessible housing for her family reveals numerous obstacles to avoiding utter homelessness. A dearth of accessible residences despite growing demand, fair housing accessibility exemptions for single family housing, and the complete inadequacy of Section 8 vouchers to cover actual rental costs in a competitive market create a crisis situation for disabled people in need of housing. Current attempts by political conservatives to scale back the already insufficient federal assistance of Section 8 vouchers promises this will only get worse for the poorest citizens.

Perhaps more worrisome is the discrimination accompanying these economic woes. Renters put-off by paperwork for Section 8 vouchers, fearing costly modifications or worrying about possible litigation may find ways to avoid taking on disabled tenants. Or landlords will simply refuse to make their property accessible to the disabled person looking to rent. From the Cape Cod story:

William Howell, New England program director for Fair Housing, an arm of HUD, said disability complaints are increasing faster than any other area of complaint about housing.

He said they now total about one-third of all the complaints his office receives, equal to those with a racial component. Most of that increase is due to landlords being unwilling to adapt housing to the needs of people with disabilities.

Complaints about refusals to rent have stayed the same. Howell and others say that may be due to people with disabilities hesitating to file a complaint if they think it will hinder their ultimate goal: housing.

"People are so very desperate to get housing," said Myra Berloff, the director of the Massachusetts Office on Disability, "that they will accept things other people wouldn't think of accepting and won't complain."

Complications in housing can, as you might imagine, contribute to the lack of employment of qualified disabled persons -- currently, only 42 percent of working-age men with disabilities are employed, and that number drops to 34 percent for women.* When the options of where to live are so restricted, the ability to relocate for a job becomes an obstacle to accepting employment. If accessible transportation is inadequate, commuting any distance becomes impossible too.

* The U.S. Census Bureau statistics for 2003 claim there are 37.5 million disabled people aged 5 and over in the country. Their numbers do not count "non-civilians" or people living in institutions.

News story via Rolling Rains.

Canadian interview with quad MP

This video clip of CBC reporter Rick Mercer interviewing Steven Fletcher -- first person to use a wheelchair elected to Canadian Parliament -- amuses and informs without being too cliché. Fletcher is a Conservative, a Federal MP from Winnipeg, and a high quad. The video is about four minutes long and I'm not the best typist, otherwise I'd make up a transcript for those unable to see or hear the clip. Anyone who can tell me some other method I could use to make a video like this more accessible, I'd be happy for that information.

Supreme Court nominee John Roberts no friend to disability rights

There's no doubt most of the debate over U.S. Supreme Court nominee John G. Roberts Jr. will center on his views of abortion and Roe v. Wade, but his record on disability rights shows that Roberts brings a seriously conservative slant in his replacement of the more moderate Sandra Day O'Connor. Roberts was instrumental in Toyota v. Williams, the 2001 ADA case where he argued for the corporate defendant before the Supreme Court and specifically convinced swing voter O'Connor to support restriction of who qualifies as disabled under the ADA.

In 2001, Slate's Dahlia Lithwick presented a clear and pithy summary of the arguments before the Court, where thanks to Roberts it was concluded that the loss of a job due to severe work-related repetitive stress injury does not qualify someone for coverage under the ADA. Despite carpal tunnel syndrome and tendonitis resulting in "lumps the size of a hen's egg in [her] wrists, and [her] hands and fingers... curled up like animal claws," the Court ruled that plaintiff Ella Williams was not disabled because of Robert's legal arguments:

"She can brush her teeth, wash, bathe, do laundry and cook breakfast. She can take care of personal chores around the house. [Her wrist injury] is only a problem at work."

Thus, Williams was too disabled to do the job which impaired her, yet not impaired enough to be deemed disabled. A fuller analysis of Roberts' contribution to this undermining of the ADA and it's intentions can be found at Ragged Edge.

For a broader look at Roberts' record, see the PDF file here. For a quick and easy way to contact your senator in protest of Robert's nomination, go to NARAL. Send them money too. They do the hard work.

Retirement community sued for denying woman right to hire personal attendant

Shortly before her 80th birthday, Blanche W. Bell, a resident of the Bishop Gadsden Retirement Community in Charleston, SC, started needing help with things like bathing and getting in and out of her wheelchair. Using her own money, she hired some personal care attendants to assist her in her apartment at Bishop Gadsden. She loves the retirement community, she says -- and wants to remain part of it.

When Bishop Gadsden officials found out about her attendants, they told Mrs. Bell that she must move into its on-campus nursing home or leave the retirement community altogether. They said their decision was based on their policies that ban long-term use of personal care attendants in their cottages and apartments. The policies, according to Charleston, SC attorney Harriet McBryde Johnson, purport to give Bishop Gadsden unilateral authority to determine where residents should be "placed."

The full story at Ragged Edge.

Update: More media coverage. (Use bugmenot.com to bypass registration.)