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.)

London

Although I live in such an amazingly quiet and peaceful little patch of the American Midwest that the chaos of terrorism seems almost unreal, my deepest hopes are for an end to violence everywhere. Belatedly, I want to say my thoughts are with the people of London.

Why U.S. didn't deserve the 2012 Olympics

I expect there are numerous reasons that New York didn't win the bid for the 2012 Olympics and wasn't even really in the running. Failure to build a stadium that could house many of the primary events surely helped sour the proposal. International joy over American foreign policy no doubt also helped.

But the absolute and total failure of any United States media to provide real coverage of the Paralympic events in Athens in 2004 should have been enough to make America ineligible to host any international Olympic party. After the Olympics, the Paralympics are the largest sporting event in the world with over 4,ooo athletes from 120 countries competing in the Summer Olympics of 2004. Although the Paralympics began in 1960, they have been part of hosting the Olympics themselves since 1988 and accommodations for the Paralympics are now well-integrated into the bid process of any credible host city candidate.

Yet, while Britain's BBC provided about 1.5 hours live coverage each day of the Athens Paralympics (twice the coverage time it gave in Sydney), there was no live coverage of any event on any day from any American network. Corporate sponsorship was eventually found for a two-hour recap of the 11-day event, which was broadcast two months after everyone competing in Greece had gone home. Even that coverage was incredibly obscure:

With only days to go before the highlight show aired, the Outdoor Life Network’s Web site listed only “TBD” (to be determined) next to “Paralympics.” And that could be found only after considerable searching; nothing on the network’s home page indicated that the Paralympic recap would be airing.

If only more U.S. media had been available in Athens to cover the continuing competition. Hmmm? But of course: NBC broadcast 1,200 hours across 17 days of the Olympics. The corporation sent 3,500 employees to cover nondisabled events, including dramatic feature stories of some athletes who competed despite physical trauma and impairment -- car accidents, battles with cancer, old injuries or even current ones. These features on nondisabled athletes are used to define the competing spirit of the Olympian and create compelling narrative.

But when U.S. networks turned down the rights to air the Athens Paralympics, they cited lack of viewer interest as a primary reason. As for print media, USA Today sent one reporter with six specific story ideas and a firm resolve to ignore any other interesting story leads.

In New York's bid for the 2012 Olympics (this on page 38), the best hope for a commitment to future Paralympic coverage the city could offer was that NBC stay for the competition beginning in 2010. Apparently, NBC scheduling (and it's associated platforms of MSNBC, CNBC, Bravo, USA, Telemundo and NBC HD) is filled up with Queer Eye reruns until then. Comparatively, London needed only to mention they'd do more of the same coverage (in 2006, 2008, 2010 and 2012) to completely put us to shame. Actually, 40 other countries -- including China -- wouldn't have needed to promise anything better than their last effort to make the U.S. look bad.

All of this was noted in Greece by the rest of the world last year. If you didn't hear about it here in the United States, that's no big surprise.

MIT survey

The excuse of architecture

With the 15-year anniversary of the ADA rolling around next month, reflection will naturally focus on the tangible changes the law has or has not achieved -- employment of disabled people and the public and private physical landscape of society. Undoubtedly, the mainstream press will also editorialize extensively on the "nuisance" suits businesses fall victim to when they fail to comply with the law, and we'll hear another round of outcries to further weaken the ADA by requiring a waiting period before suing under Title III. It's such a shame American businesses have had no warning about the ADA and that it might just apply to them. Why, who wants to discriminate against disabled people? If we just had a little notice we'd fix everything up to code right away!

But in the current print edition of New Mobility (other portions of that issue viewable at the link), Mark E. Smith of wheelchairjunkie.com describes a situation the law was designed to stop, where lack of wheelchair access fueled the rationale of exclusion and exclusion fueled the bigotry that belies the patronizing belief that all people just want to help the disabled if only given the chance.

Only a few months before the ADA's 1990 passage, Smith, his future wife, and three other couples went for dinner at a restaurant in the San Francisco Bay Area. Smith's friends easily carried his wheelchair in the inaccessible front entrance, but the hostess refused to give Smith a menu or even speak directly to him:

"If he wants to eat here, you'll have to order for him -- we don't serve people like him."

The restaurant manager had some handy logic for this policy when he backed up the hostess' words:

"You're not even supposed to be in here," the manager said, raising his voice. "We don't have a ramp, so we don't have to serve you."

Instead of treating Smith like any other patron as he and his friends insisted, the manager called the police. And how did the police respond?

"I understand that you're upset," one officer said, "but there's no ramp, so you shouldn't be in here, and the restaurant has the right not to serve you."

Imagine getting upset about a little thing like being kicked out of a restaurant because they don't want to serve "your kind." Smith encountered an obstacle and with the help of his friends -- in what might be called a very American bootstraps attitude -- found a way around it exactly as people with disabilities are so often schooled they should. We're told we should persevere and somehow "overcome," as if that's always possible or the best way to spend our time. Except it was never really about the tangible barriers: "We don't serve people like him."

The belief that disabled people's exclusion from mainstream society is benign neglect is mostly an illusion. Ask any architect if he considers who will use his building when he designs it. Consider that disabled folk have been a part of the human experience since time began. Modern science has altered the number of people surviving health crises and age, and it's given us elevators and TTY machines, but ramps existed before steps were invented and yet we lack them everywhere.

Yes, it's better now. There are more ramps then there were pre-ADA. But these ramps weren't installed because people miraculously realized that folks with mobility impairments were being excluded from the fabric of society with each building that denied them access. The need to help the disabled because, "well, everyone just wants to don't they?" didn't suddenly kick in one day, and I doubt it ever will. The ramps that have been built in America since 1990 exist because architectural means of excluding disabled people was named for what it is in a legally enforcable document -- though enforcement has been spotty at best. It was named bigotry.

Ramps are perhaps the most tangible evidence of the changes the ADA has wrought in our culture these past 15 years, and they are hardly unimportant. When I went to college in 1987, I was forced to choose my banking institution not by the features of their checking account or available ATMs, but by the accessibility of the building's entrance. I did not have the luxury of opening my account at the bank I found to be the best place to do business. That much has improved for me and others in wheelchairs. (I am less certain what improvements the law has brought for people with other disabilities.)

But as Smith's pre-ADA encounter shows, ramps and other tangible means of access for the disabled are not just important for their daily practical use. They are also very real symbols that disabled people belong in society too. When the tired tale is told again and again that businesses would happily comply if they only had a little time, what they are really saying is that they don't want to bother with making inclusion a priority. If it was a priority, it would have happened long ago.

Cultural events roundup

• Commenting on an earlier entry here, artist Riva Lehrer announces an art show on disability that will show at the Chicago Cultural Center in April 2006. She's accepting artist recommendations and inquiries through the end of July 2005 and will be at the SDS (Society for Disability Studies) conference in San Francisco this June. Check here for her contact info and further details.
• Time is short: The Inglis House Poetry Contest deadline is June 1, 2005. One entry category is for poetry specifically about the disability experience, and a second category is for poetry by disabled folk about any topic. Courtesy of DisPoet.
• Superfest, the International Disability Film Festival, is next weekend in Berkeley, California: Film screenings are June 4 and 5, 12:30-5 p.m., at La Pena Cultural Center, 3105 Shattuck Ave. Tickets are $5-$20/day sliding scale and will be sold at the door. A "Meet the Makers" Reception will take place on June 5, 6-7 p.m., followed by an awards ceremony from 7-9 p.m. The reception and awards ceremony are free and open to the public. (One film features the art of Riva Lehrer, btw.)
• On a less-culturally interesting note, my email address has changed.

Redux: Beyond Affliction

Seven years ago, NPR did a week-long Talk of the Nation series on disability called "Beyond Affliction." The first 50-minute discussion explains how disability is a cultural experience. The most noteworthy thing here is perhaps that a national radio program offers a discussion between a reporter, a professor, the [then] Assistant Secretary for Special Education and Rehabilitation Services, a cartoonist and a businessman -- all individuals with disabilities. Well, and the nondisabled call-in rabble. It's still a relevant discussion all these years later, and the dynamic between the panel of experts and the general public is interesting.

For my Dad

Happy Syttende Mai!


And an amusing disability related story from Norway, even though it's not recent news.

Euthanasia debate in the UK

Guardian article, via Sam at Disability Law.

Note that the "Useful Links" at the bottom of the Guardian article are all pro-euthanasia sites.

Wheelchair DUIs

There's a lot I'd like to say about this if I didn't feel sick today. The links and some excerpts will have to tell the story on their own.

Man in wheelchair ticketed for DUI, wheelchair confiscated (courtesy of Kalahara at No Pity)

A Hampshire man trying to drive his motorized wheelchair to a grocery store spent a night in jail this week after police charged him with drunken driving. But Huntley police voided the ticket the next morning after realizing that drunken-driving laws do not apply to people in wheelchairs.

While the man was tranferred to another jail for an unrelated warrant, his wheelchair did not make the trip with him:

Huntley police still have Newman's wheelchair, and they say they will keep it until either Newman or someone he knows picks it up. Newman can walk, with difficulty, without the wheelchair, [Police Chief] Ciombor said.

A Florida case in 2004: Woman fights wheelchair DUI charge

Under Florida law, a motor vehicle is defined as any self-propelled vehicle, including a bicycle, motorized scooter and an assistive mobility device.

Some brief blog commentary on her case provides this quote from a newspaper:

Judge Peyton Hyslop, in one of his last rulings from the bench, said the wheelchair essentially was the woman's legs and that charging her in this case would be tantamount to bringing DUI charges against anyone who was drunk and standing up.....Hyslop said under those terms, an able-bodied totally intoxicated person sitting next to the impaired disabled person "would not be subject to such arrest, and only to arrest if disorderly".

Another look at Harriet McBryde Johnson

Okay, not a look at her, though I love the picture at the top of this January 2004 article where she was named New Mobility magazine's Person of the Year. She does gimpy with class. It means a lot to have media that present real images of real disabled people and their bodies. If Hollywood put more actual disabled people on film maybe we wouldn't look so scary to the average nondisabled person, just like average-sized women wouldn't look so overweight compared to stick-thin models (with breast implants) who supposedly represent natural womanhood.

Anyway. I meant another look at "Unspeakable Conversations," the amazing article McBryde Johnson wrote in 2003 for The New York Times Magazine. That article and the response to it were the stepping stone to McBryde Johnson's new book, Too Late to Die Young: Nearly True Tales from a Life, recently reviewed by Ragged Edge. I plan to review it too, once I get my copy and have some time with it.

ICF photo contest winners of the past

Some fascinating and haunting photos on health and disability found here and here.

Blind folks and child care

In Colorado, this story (via Sam):

Christine and Thomas Hutchinson can open their day-care center after all, if the state doesn't appeal a judge's ruling that their blindness can't prevent them from obtaining a state license.... The state Department of Human Services had denied the couple a license to operate a day-care center in March 2004, solely because both of them are blind, administrative law Judge Matthew E. Norwood said in an opinion signed May 4.

The department denied the application, despite a list of nine conditions proposed by the Hutchinsons to accommodate their disabilities, including limiting their center to four children, modifying their home so children couldn't leave without permission, preparing with parents instructions in Braille for dispensing children's medications, having cell phone contact with parents available, and having sighted people attend field trips and help with paperwork.

This case of blind people being considered incapable of caring for children isn't unique. In December of 2004, California Child Protective Services attempted to take custody of the newborn boy of Marco and Adeline Zepeda after the couple had made inquiries at the hospital about home health care services. The full account of their ordeal and the 2004 case of Alabama's Tyrone and Pianne Jordan were covered by the National Federation of the Blind as a worrisome new trend in state agencies. Along with the apparent unwillingness to consider blind adults as capable and responsible parents, these two previous accounts reek of classism and racism as well.

As for the Hutchinsons, the state of Colorado has not yet said whether they will appeal the judge's ruling.

Something of a book review: The DaVinci Code

Spoilers in this entry if you are among the six people left who have not read this book.

The DaVinci Code by Dan Brown is one of those books that is a pop culture phenomenon and you feel like you need to read it just to keep up. Before I read the copy someone had passed along to me, I chanced upon a review of the book from a disability perspective by Carolyn Anne Anderson. Only skimming the first half of her review at the time, I saw that the fourth paragraph began like this:

It may just be habit to some writers as they begin to formulate a villain's character, to give them some form of disability.

I didn't finish the review then, but my interest in The DaVinci Code was truly piqued. I wanted to witness Brown's use of disability stereotype for myself. At the same time, I no longer needed to read the book -- this one sentence of Anderson's revealed such a disability cliché that the final plot twist was known to me before I even cracked the book. Not only was the primary villain disabled (polio), his evil nature is the "dramatic secret" of the novel's final moments. Yay.

Well, actually, the villain isn't disabled so much as "crippled." Crippled. Crippled. Did I mention he is crippled? Well, Brown does. Over and over and over as Mr. Crippled Secret Villain limps around and other characters comment on the fact that he is crippled. This is to make sure that the densest reader understands that twisted on the outside means twisted on the inside. Why is he a villain? Because he's crippled and that can drive a person to be not nice.

It turns out that Mr. Limpy also has a henchman who is albino. Physically different means evil, remember. As so often happens, disability is used as metaphor for something else and not left to exist as a natural part of a character on it's own.

There are plenty of other problems with originality in Brown's novel. And disabled people can join the Catholic church in finding something in the book that's offensive. I knew I wasn't diving into fine literature when I read The DaVinci Code, but you know a stereotype is really tired when it gives away the ending of a thriller to use it at all.

Blogrolling on with Audacity

There's some noise in the blogosphere recently about deleting blogrolls because they contribute toward a meritless kind of popularity contest. I'm adding to the blogroll here every chance I get, especially to the list of disabled folks who write about how the personal is political for them. It's no popularity contest here, but an urgent need to find each other and share. Here's a great online disability magazine I came across yesterday in someone else's blogroll. I can't believe I've never heard of it before. Now it lives on my blogroll too.

Disability organizations file amicus brief in Gonzales v. Oregon

From today's press release by Not Dead Yet:

Eleven prominent disability organizations and one university-based policy center filed a friend of the court brief today with the U.S. Supreme Court in the Oregon assisted suicide case. Not Dead Yet, the leading national disability rights organization opposing legalization of assisted suicide, filed the brief, which supports the U.S. Department of Justice (DOJ) appeal of the decision in the lower court, which upheld Oregon's assisted suicide law.

A summary of the argument (found in the brief) includes this statement:

When applied only to people with significant or even "terminal" health impairments, Oregon's assisted suicide law encourages the disabled to end their lives - and guarantees such efforts will be successful - while other state laws concurrently discourage non-disabled persons from doing so. Assisted suicide laws deny people with disabilities the benefit of programs and laws that prevent suicide and are the ultimate legal judgment that the life of a person with a disability is not as worthwhile as that of a non-disabled person.

Assisted suicide also raises serious ethical concerns regarding the medical profession's treatment of the disabled. It requires doctors to make difficult, if not impossible, determinations of a person's competency and life expectancy, the consequences of which are both ultimate and irreversible. The availability of assisted suicide also distracts from the determination whether a person's desire to die might be lifted with improved treatment, community-based health care or other measures that improve a person's independence and dignity.

Diane Coleman, president and founder of NDY, explains succinctly:

If assisted suicide were really about personal autonomy, it would be available to all suicidal people. But really, assisted suicide statutes are the ultimate societal judgment that the life of a person with a disability is not as worthwhile as that of a non-disabled person.

Love of imperfection

A couple old posts from Real Live Preacher don't quite find a tone of disability acceptance and pride, but are nonetheless lovely to me even if the author doesn't realize he's ruminating on issues of bodily normality, self-image and disability. In the first essay, RLP writes about his young daughter's vision impairment and how the unique gestures of accommodation she makes for her bifocals are simply part of the child he loves.

Her glasses make her eyes look bigger than they really are, giving her a “Hummel” kind of cuteness. If you stand close to her, there is a little magic zone where she isn’t sure which lens will best render your face. She will cock her head back to try the bottom lens, then drop her face down and try the top.

I’ve been known to find this zone and stay there until someone drags me away.

In a second, later entry, RLP expresses poignantly his regret (mixed with understandable happiness) that her vision improves until his little girl no longer needs her bifocals. He's wistful about her better eyesight and how it changes things for himself and for her, and he expresses guilt about this wistfullness even as he recognizes his love for his daughter's imperfections is something precious and important.

A very good part of me loved her bifocals. It’s one of the best parts of me, in fact. I loved the way she tilted her head with bifocals, like an old woman. So cute in a six-year-old. She would tilt back to read and forward when looking at me across the table.

I’m stunned to find the seed of Munchausen in me. I’d like to keep the bifocals for my own sake. I would. This kind of evil is always lurking very close to the best in us. It’s okay. I see it. I’ve named it. It has no power over me.

The ambiguity of his feelings is not evil to me, but it is very powerful. It's part of disability pride and the lack of interest in a cure that so many disabled folks hold and which nondisabled folks find unbelievable. It's because impairments are a natural part of life. It's the sheer (perhaps even divine?) ordinariness of human imperfection and how it paradoxically renders each person memorable and unique, creating individual perception, creativity, gesture, and connection to the ones we love.

As his daughter experiences vision without the bifocal magnification she was used to, RLP does not name her new vision as superior to her previous way of seeing. He recognizes it is only different.

My little girl lost her worldview, her way of seeing things, and that always hurts. This is good pain, leading to new ways of seeing, so I put my hand on her leg and kept driving. I let her cry. And I was proud of her. Proud that she is so little and bravely shedding her old way of looking at the world. Bravely she takes up this new way of seeing.

Both essays in their entirety are worth reading for their thoughtfulness and sensitivity.

The art of Riva Lehrer

These portraits of disabled people by an artist with a disability aren't new, but I enjoy them.

The Chunky Bastard Monster Step and other good times

One of the difficulties with having a mobility impairment is that even inquiring about accessibility from nondisabled people who truly wish to be helpful often fails to provide any useful information. Or it results in misleading information that further complicates a journey, short or long. A direct inquiry as to whether there are steps, for example, proves to be a meaningless exercise if an unobservant nondisabled person is never bothered enough by their existence to note they are there. I've called ahead to businesses where the person on the phone swears the place is completely wheelchair-friendly, only to arrive and find three steps leading into the ballroom or restaurant and no alternate way inside.

The helpful phone person, when informed, will say something promising like, "Oh. Hmmm."

Or possibly, "Well, we don't get many handicapped people in here."

Agent Fang's excellent blog, Fangworld, describes some recent travel adventures armed only with her wheelchair and wit. It all begins promisingly enough, as it often does:

I started looking at the really big hotels. Got one with a car park attached. Good start. Rang up, had a little chat about access. This is the time to judge whether you are really welcome, or will terrify the staff, who have likely never seen human/wheel combinations before (or will at least act like it). Staff were nice. Asked for suite with handrails and wheelchair access. There was a pause before she explained they only have one suite with access... the mini suite. Didn't sound bad, so I booked it at the standard double price -- she did explain it was a little more usually but for disabled people who couldn't choose the standard room they would put me and Mr F (who's had a two day week this week, v. smug) in the mini suite.

Their arrival, of course, proves to be something of a disappointment:

As we rolled up to the hotel, the first thing immediately apparent was the Small Harmless Step in the website photograph was actually a Chunky Bastard Monster Step. Deep breath. Second was their prestigious 30 space car park was actually a tarmacked area rented from the hotel next door. We looked on in innocent surprise at the tiny narrow spaces, and a faint warning bell sounded in my head as we realised they'd forgotton to reserve us the two I'd been allocated for wide door access. In the end Mr F dropped me off outside the hotel and went to park, whilst I sat in full view of the reception desk, glaring at the monster step and a little sticker on the door saying "We Are Access Friendly".

I am never sure if such proud claims are cluelessness or some sort of legal ass-covering bluff. Maybe just wishful thinking. Anyway, Agent Fang is on yet another little journey, so stay tuned to her blog to hear how that goes.

Happy Birthday Nellie Bly!

Elizabeth Jane Cochrane, born on this day in 1864, was a feminist before the word existed. She was a disability rights advocate too. Her journalism career began at age 23 after her sharp reply to a Pittsburgh, Pennsylvania, newspaper article that criticized working women. Under the name "Nellie Bly" she became known as the "best reporter in America" at the end of the 19th century. She is known for her journalistic courage in committing herself to a mental asylum for ten days to uncover the practices there. Her reports -- available online in full text as Ten Days in a Mad-House -- led to a state investigation of New York City's Blackwell Island asylum and eventually to better funding and reforms in patient care.

She was a researcher, an investigative reporter, an industrialist and a reformer. In 1873, she set out to best French author Jules Verne's fictional character who traveled Around the World in 80 Days. She did it in less than 73. Later, she was the first female to cover the front lines in World War I.

(Via Penny Richards at Disability Studies, Temple U.)

Daughter denied Colorado driver's permit because of blind mother

This story via Sam at Disability Law. Here's an excerpt:

Julie Barber is 15, with a learner's permit and a burning desire to get behind the wheel of a car. But due to a combination of a recent change in state law and her mother's severe vision problems, she won't be driving anytime soon.

In a lawsuit filed Monday in U.S. District Court in Denver, Barber and her mother contend they are victims of discrimination. That's because the state requires a parent or guardian with a Colorado driver's license to be in the car with Julie. But her mother doesn't have a license, and state authorities are refusing to allow the Barbers to substitute another adult.

Marcia Barber, 50, contends Colorado Attorney General John Suthers suggested she assign legal guardianship of her daughter to someone else so the girl could drive, according to the lawsuit.

Buffalo firefighter suddenly improves after ten years without memories

Donald Herbert, a firefighter from Buffalo, New York, has lived in a nursing home for the past seven years, mostly silent, nearly blind and with severe memory impairment since injuries leading to oxygen deprivation occured at an apartment fire in 1995. Over this past weekend, he suddenly became animated and asked for his family, believing he had lost only about three months time and not the ten years that have changed his youngest son -- a toddler -- into a 13-year-old boy who answered the phone when Herbert had a nurse call home.

By all accounts, this change seems miraculous and how permanent or complete Herbert's recovery will be is unknown yet, but there are some salient points to his story with regard to disability. From the NYT:

In 1999, a year after he was moved to the nursing home, Linda Herbert [his wife] prevailed in a brief legal fight with Mr. Herbert's parents, Geraldine and Donald P. Herbert, over who should have control over decisions in a medical emergency, like pneumonia or a serious infection. All agreed that extraordinary resuscitative measures should not be taken in the event of a stroke or a heart attack.

No one has asked any of the Herberts if they would have signed a DNR ("Do Not Resuscitate" order) had they known the firefighter would wake up in a decade and recognize family and friends (and to be fair, it's not the sort of thing to be routinely expected), but it's quite possible the verdict wouldn't have been unanimous. And so little is really understood about the human brain that experts cannot predict or explain when a "miraculous" recovery of this sort might happen. From Newsday.com:

Dr. Rose Lynn Sherr of New York University Medical Center said when patients recover from brain injuries, they usually do so within two or three years.

"It's almost unheard of after 10 years," she said, "but sometimes things do happen and people suddenly improve and we don't understand why."

And while nondisabled observers might ponder what life "trapped inside" a nonresponsive body or brain might be like, even imagining it to be hellish and a living death, as many said about Terri Schiavo, Herbert's experience of the past decade doesn't seem to be a hell of any kind. He thought he'd been recovering for about three months. And, of course, as people are wont to do, he seems happy to be alive and visit with family and friends. Good thing that DNR didn't get put to use. Good thing he didn't have a feeding tube.

Autism is a World on CNN May 22

The Academy Award nominated documentary Autism is a World makes its television premiere Sunday, May 22, at 8 p.m. (ET) on CNN. Narrated by actress Julianna Margulies but written in her own words, the film tells the story of 26-year-old Sue Rubin of Los Angeles. From the press release:

Rubin has been on an extraordinary journey for 26 years. When she was four, her unusual behavior led to a diagnosis of autism and contributed to the belief that she was mentally retarded. But at age 13, a new communication technique gave Rubin the ability to connect with the world and exhibit her considerable intelligence. Now, she is a junior in college, a tireless disabilities-rights activist and an articulate guide into autism.

Rubin wrote the documentary, and is the viewer’s guide into autism. By typing into a handheld communication device, Rubin explains her feelings and her actions, such as her need to clutch spoons or why she finds comfort in falling water; her relationships with other people; and how she copes with the tasks of daily living and the challenges of college.

Rubin also describes some of her unusual behavior. She does not make eye contact when greeting strangers and instead may fixate on their shirt buttons. She cannot verbalize a person’s name but may frequently repeat the same word or phrase. By discussing some of her behaviors, Rubin provides insight into this complex part of autism.

Rubin guides the audience through all that is special and usual about her life. From the racetrack where she goes to unwind to the classroom where her intellect shines and from a presentation at an autism conference to the challenges of paying bills or shopping, Rubin takes an unflinching look at the world of autism and the challenges she must face daily.

Disability bloggers everywhere

I haven't been able to write here for a while, but lots of traffic here at the moment from Ragged Edge. Do yourself a favor and check out these other bloggers who write about disability that the Edge didn't have a chance to mention:

Disability in the Brazilian Context

Iron Jawed Angel

Nightengale of Samarkand

Nodakwheeler

The 19th Floor

Also -- Yeah, But Houdini Didn't Have These Hips -- an online friend of mine, Sarahlynn, is one of many parents who blog about life with a child who has Down Syndrome. Her perspective often teaches me to think harder about the whole realm of disability experience, and her thoughtful blog includes links to many other parents like herself. Plus, behold adorable pictures!

On Terri Schiavo

As Harriet McBryde Johnson says, "The Terri Schiavo case is hard to write about, hard to think about." I've had an emotional deer-in-the-headlights response about it for quite some time now. Months. And while the legal options for saving Terri Schiavo from starvation may have been exhausted, I'll offer here some writings by others that provide the disability perspective so lacking in the mainstream debate.

Harriet McBryde Johnson on Slate, via Disability Law:

In addition to the rights all people enjoy, Ms. Schiavo has a statutory right under the Americans With Disabilities Act not to be treated differently because of her disability. Obviously, Florida law would not allow a husband to kill a nondisabled wife by starvation and dehydration; killing is not ordinarily considered a private family concern or a matter of choice. It is Ms. Schiavo's disability that makes her killing different in the eyes of the Florida courts. Because the state is overtly drawing lines based on disability, it has the burden under the ADA of justifying those lines.

Steven Drake, research analyst for Not Dead Yet:

Given the current research regarding brain activity and misdiagnosis, it's a virtual certainty that countless people have been helpless to prevent their own deaths through starvation and dehydration. There's an analogy to DNA evidence and the death penalty. Here in Illinois, the staggering numbers of innocent and wrongly convicted people on Death Row resulted in a moratorium on the death penalty. Whether you agreed with the death penalty or not, everyone was forced to find ways to make sure no innocent person ended up on Death Row again. The same amount of concern should apply to medically induced deaths, in which the numbers far exceed the number of convicted people executed each year.

More by Stephen Drake:

People on the right are killing us slowly with cuts to the budget and Medicaid while the people on the left kill us quickly and call it "compassion" -- either way we end up dead -- AND WE OBJECT.

Ragged Edge Editor Mary Johnson's outstanding comments at Common Dreams:

There isn't a single disability rights activist I've heard from who is happy that things ended up at such a sorry pass, and who isn't afraid that this will make liberals hate them even more than they now do. Yet it cannot help being noticed that it generally depends on whose ox is being gored as to what side of the states' rights debate one comes down on. We're all for federal laws when it comes to things like civil rights -- and gay marriage. We're not, though, when it comes to things we've labeled as "right to die" -- which we say are "privacy issues."

We might want to take another look at the cost of such privacy.

Further links to follow here.

Pioneer plans town for sign language users

Marvin T. Miller plans to start a town in South Dakota for users of American Sign Language. Deaf since birth and the co-founder of the first national deaf newspaper, he has dreamed of a community based on sign language communication since his youth. Laurent, named after Laurent Clerc, a French educator from the 1800's who founded the first school for the deaf in the United States, would be the first town started in the region in well over 100 years.

As I've noted before, Martha's Vineyard was a deaf community in the 1800s. The Minneapolis Star Tribune mentions this from a slightly different perspective:

Laurent would not be the nation's first deaf community. More than 200 years ago off the Massachusetts coast, a group of European settlers on the island of Martha's Vineyard carried a gene for deafness and produced generations of children who could not hear.

By the 19th century, one village on Martha's Vineyard had so many deaf residents that even those who could hear had to learn sign language to succeed there.

What I've read previously indicated that sign language usage was so well-integrated that residents were not so much obligated to learn (read: burdened with the chore of communicating with the Other) but enjoyed all the benefits of bilingualism that anyone in a foreign country would.

While the culture on Martha's Vineyard resulted from heredity and geographical isolation of the time, there have been concentrations of deaf residents in many regions since then. But nothing quite so deliberately planned has been achieved before. From the NYT:

The difference in Laurent, say some among the 92 families who have reserved spaces in the town from as far as London and Australia, is that every element of it would be designed with them in mind. The homes and businesses, they said, would incorporate glass and open space for easy visibility across wide distances. Fire and police services would be designed with more lights and fewer sirens. High-speed Internet connections would be available all over town, since the Internet and Video Relay Service have become vital modes of communication for deaf people. And any shops, businesses or restaurants would be required to be sign-language friendly.

Not everyone interested in living in Laurent is deaf, though Miller, his wife and four children all are. Most deaf children are born to hearing adults, and education of deaf children -- with the frustrating tension between public school language barriers and special school seclusion -- is a primary motivation for Miller. Not surprisingly, fierce debate centers around whether deaf people should integrate more fully into society or exclude themselves with enclaves like Laurent hopes to be. Often, this argument depends on whether deafness is seen as a medical condition of the individual ("curable" for some through cochlear implants) or as a culture to be celebrated. Laurent is obviously a cultural project and as planning continues, progress can be followed on Marvin's Laurent, SD, blog, added to my sidebar at right.

NPR features artist Sunny Taylor

A wonderful interview on NPR introduces Sunny Taylor and discusses her realistic oil paintings and disability rights philosophy. View her portfolio on her personal site and read what she says about disability, work and power in a capitalist society, as well.

French ad offers fresh perspective

A French energy company has produced a video advertisement about access for the disabled that is quite interesting. The link leads to a page in French (naturally) where you can choose high (haut) speed or low (bas) speed video. Here's a quick description of the ad:

"One is the Loneliest Number" is sung by Aimee Mann in the background. On a noisy city sidewalk a nondisabled woman is jostled slightly by the busy activity of numerous people in manual wheelchairs hurrying about their business. She appears to be wanting help with something but no one stops to talk to her. A different woman in a bank informs a teller she would like to open an account, but he responds in sign language she clearly cannot understand. On a street in
the heavy rain, a nondisabled man slips and slides to keep his footing while people in wheelchairs easily roll by. At a public phone, a nondisabled man stoops over awkwardly because the phone is adjusted for a seated person's height. Across the street, a person in a wheelchair points at him because he looks so strange. A "pedestrian" traffic signal that would usually show a symbol of a person walking has a symbol of a person wheeling instead. It turns green and a happy young man and woman in wheelchairs cross together. In a library, a nondisabled man steps around a woman using a white cane, but when he looks at a book he sees that it is all in braille and he cannot read it or any of the books around him in the library. At the bottom of the screen: Le monde est plus dur quand il n'est past conçu pour vous. Translation, is, I believe: The world is harder when it is
not conceived for you. Then a voice says: Desormais, les espaces EDF sont accessibles à tous. From now on, the spaces of EDF are accessible to all.

I'd be curious to know how nondisabled viewers of this ad interpret it. Would their description include everything mine does above or would they not have noticed some things that were obvious to me? For example, would they notice that the first nondisabled woman is not only the lone person without a chair but seems to need some help and no one stops? Would they notice that the disabled person pointing to the man at the phone is staring because he is not "normal?" These observations of the content of the advertisement involve inversions of everyday encounters to me, but does a nondisabled person viewing the ad even register that this is what is happening? I'd be interested to know.

The ad isn't a perfect translation of the disability experience, of course, but it is much more sophisticated than most cultural statements about accessibility. It reaches beyond the idea of ramps and physical adjustments of the environment to include social relations and the conceptual privilege nondisabled people enjoy by sustaining an environment that is not "conceived" as being for everyone.

Often, the argument against compliance to the ADA is that disabled people are demanding something "extra" and their quest for equality oppresses business owners or employers who must suddenly provide something additional to the disabled person that no one else is asking for. The implied belief is that the nondisabled person never asks for anything "extra," though this is not really true. Rather, the built world is "conceived" to include the extras they might need. Lights, for example, which none of us who can see consider an extra at all, but a blind person surely doesn't need. Another "extra," as seen from a traditional male perspective is on-site daycare at work. Of course, that view involves both the conception of a world where women take care of all the children AND stay at home to do it. "Extra" is in the eye of the beholder in many instances of disability access too.

Yet the idea that accommodating disability is an extra is so firmly implanted in our culture's conception of the world that we don't even see our nondiscrimination policies toward the disabled for the proof of and continuation of marginalization that they are. Look at the simple example of "disabled person access" signage. We have designated signs for where disabled people can find inclusion in our society. Can I get in this building? Look for the sign. Can I ride this bus? Look for the sign that allows for my existence on board. (Of course, even the universal symbol for disability is marginalizing in that a stick figure in a wheelchair hardly illustrates access for someone who is deaf.)

The signs ARE useful when used to designate actual wheelchair accessibility (which often has no relationship to compliance with the legal standard), but this is because the rest of the world continues to be conceived of without a thought for inclusion of everyone. And the ways the signs tend to separate us out is a form of segregation, however benign the intention. Having a place to put disabled folks in is as dangerous to us and our ability to be a part of society as having no place for us at all. We want to be everywhere. We want signs to be redundant. We want all of society conceived to include us.

There's a short story that further illustrates this need for a paradigm shift. In a fictional utopia of disability inclusion in the year 2050, a historian tells the awakened Crip Van Winkle how things have changed:

All conveyances, public or private, for transportation by land, air, sea and cyberspace, for individual or collective travel are naturally covered by the Universal Design principle. You don't seem to understand, van Winkle, the United States of Europe officially abolished Apartheid in the year 2024 -- 30 years after South Africa but better late than never. Since then, Universal Design has been the law of the land and the international sign of access that you guys were so proud of, is forbidden. It singles out and stigmatizes a particular group of citizens. Besides, it is not necessary anymore -- I guess it never really was necessary. Already in your day and age it would have been better to mark the places that were inaccessible in order to point out the full extent of the injustice. By using the symbol of access you did yourself a disservice, because the symbol served as an alibi for the accepted norm of inaccessibility emphasizing the exception rather than the rule.

Like the short story, the French ad attempts to reveal the ableist paradigm we all live under by inverting it. While a clever advertisement doesn't indicate how well the company achieves inclusion in the real world, the awareness it shows is refreshing. It suggests that lack of inclusiveness is a failure of creativity that should not be explained with any alibi.

(Ad via Aleja.)

Jarek Molski and me

Sam at the Disability Law blog (the first one listed on my sidebar) reports on several important new stories, including a new NEJM essay by doctors in the Netherlands on killing disabled newborns and a judicial opinion issued on the Molski case in California. It's the Molski case I want to focus on here now.

Jarek Molski, a 34-year-old resident of Woodland Hills, California, has filed more than 400 lawsuits against businesses all over California charging noncompliance of Title III of the ADA as well as state laws preventing disability discrimination. While Molski sued for damages (and personal injury in many instances) under the California statutes, the ADA has received the brunt of the complaints from business owners and media reports. Often, publicity over Molski's actions fails to make the distinction that Title III of the ADA does not allow suit for damages. (Clint Eastwood failed to make this distinction as well, when he testified before Congress supporting weakening of the ADA.) Ironically, this limit to the federal law contributes to the problem of continued noncompliance of businesses nationwide -- and encourages serial plaintiffs like Molski. Sam explains:

The public accommodations title of the ADA does not authorize an award of money damages. Without that financial incentive, it's hard to find plaintiffs or lawyers who believe it worth their time to file ADA public accommodations suits. Even people who really were excluded from stores or restaurants that were really in violation of the ADA often will not want to go through the stress and hassle of an ADA suit if the best they can do at the end of the day is get a court to tell the defendant to go and sin no more. So the plaintiffs in ADA public accommodations suits are likely to be disproportionately ideological plaintiffs -- people who see it as in some ways their mission to make their communities accessible. Ditto for the lawyers. Such people are likely to file lots and lots of suits. There's nothing inherently suspect about that.

To go even further, I could see a serial plaintiff using damages from the state statute rulings to "fund" further noncompliance complaints. After all, 15 years on the books hasn't been enough to encourage thousands upon thousands of businesses nationwide to install even simple ramps. Like any law, the ADA and other disability nondiscrimination statutes can surely be abused, but I have a difficult time finding sympathy for inaccessible businesses I could never patronize that gripe about complying with a law passed in 1990.

In my hometown, both the local post office and the renovated screening rooms of the movie theater are inaccessible to me. To be clear, the only post office for miles around has no way for me to enter and no current plans to change because of the age and historic nature of the building. Dozens of other local businesses are inaccessible too, and this is not unique to this current residence of mine. Like other mobility-impaired individuals, when I consider going somewhere new -- when friends or family discuss a social outing with me -- the first consideration we must have is whether or not the place we wish to go is accessible. If it complies with the law. As often as not, we must alter our plans. If I decided to sue every business I came across that was truly violating the law just by failing to give me entrance into their front door (never mind restroom accessibility, which is equally important, really), I would not have to exert myself to become a serial plaintiff too. Noncompliance is everywhere.

Update, March, 2007: Last time I checked, the local post office says they will lay down an extremely steep (not-up-to-code) ramp at the back entrance if you call ahead for it. I've never tried this and don't know if it actually provides useability of any kind.

And the local multi-screen movie theater has installed stadium seating that requires wheelchair users to sit very close to the screen. I haven't been there since starting to use the ventilator, but before that I could not use the designated spaces without causing some serious neck pain from craning my neck. Installed seating close to the screen compensates for this problem by letting the customer recline a bit, but wheelchair users don't have that choice and cannot sit farther from the screen because of the stadium-seating stairs. This is an example of innovation for nondisabled people that makes the venue inaccessible for those in wheelchairs.

Rapists target disabled women in Zimbabwe

This brief news report states that disabled women in Zimbabwe are being raped because of a widespread myth that -- like virgins -- sex with them will cure a man of HIV/AIDS.

Cure 'em or kill 'em on ABC soaps

This past week two different ABC soap operas had storylines culminating in the typical cure 'em or kill 'em scenario mainstream entertainment uses to illustrate it's angst about disability. Both situations involved long-time male characters whose lives have been intricately woven into the shows over more than a dozen years. Both characters have held typical male hero status in the past for their actions, physical attractiveness and morality, and both have been very popular with fans of each show.

On All My Children, Edmund Grey had been a paraplegic for many months now following some sort of tragic accident, and though the show's seemingly positive commitment to not miraculously curing him was a chance to explore the reality of life with a wheelchair, they did not take that opportunity. Instead, Edmund grew bitter, bemoaned the loss of his sexuality and distanced himself from his beautiful wife.

Edmund did return to his job post-injury, though how he managed to get there isn't clear, especially because of the ornamental nature of the ramp in the family mansion's sunken living room. The ramp -- long, lovely and not too steep -- was blocked by a door swinging inward into the living room. No wheelchair would have been able to get around that door. If the ramp had been moved over six inches or built wider, it would have been functional and a true example of making an awkward inaccessible room user-friendly. But actually living with a disability was never the point of Edmund's injury and living disabled was never meant to be Edmund's fate. Bitter disappointment and death apparently were.

Edmund was murdered last week -- some typical whodunit mystery -- and his tortured soul and twisted body are finally at peace. Oh, there had been risky surgeries to try and heal him, talk of marriage counseling and giving post-injury life a chance. Everyone but Edmund saw hope and alternatives to his angry impotence. But since a cure was impossible (as it should be, at this point in time, if spinal cord injury is the impairment), so it was death -- the other option for disability, once again. And yes, Edmund's dead body lay on a hosptial gurney, assuring the viewer he would not reappear years later without some supernatural intervention. He is well and truly dead.

And on General Hospital, Lucky Spencer was shot and lapsed into a "persistant vegetative state." On a ventilator, the doctors all believed him a hopeless case. In a clear adaptation of the Terri Schiavo legal battle, his father wasted no time and rushed to court in a fight against his son's aunt, brother and many friends who wished to keep Lucky alive. Perhaps three days had elapsed since his injury, but Lucky's father believed he must "pull the plug." His theory, tearfully pleaded in court, was that his son understood danger and needed the threat to his life. When the ventilator is turned off, if Lucky is "still in there somewhere" he will react on instinct and wake up, his father said. If not, it was useless all along. But Lucky's father felt this was the cure.

And of course it was the classic "cure." One way or another, the problem would be solved. The judge ruled for the father unplugging life support and miraculously Lucky began to breathe on his own. In a clear example of cure 'em or kill 'em dramatics, the cure was to either wake up instantly or die. Either way disability and the real issues of injury and impairment -- along with the social judgments making a story like this acceptable -- were disappeared. Lucky was almost immediately restored to perfect health and the ethical decisions made in court reinforced that dead is better than disabled.

Spector v. Norwegian Cruise Line

On Monday, the U.S. Supreme Court heard arguments as to whether or not the ADA should be enforced on foreign-flagged cruise ships which dock at U.S. ports. Emerging Horizons offers a summary of the oral arguments and NPR provides some good overall coverage of the legal conflict involved. Spector v. Norwegian Cruise Line stands to be the next test for the ADA, which the court has repeatedly weakened, mostly in decisions over what constitutes a disability and who then qualifies for protection under the act.

This case will likely hinge more on the value the court places on U.S. civil rights, generally, versus the interests of the international community, as the oral arguments suggested. As the ADA is applicable -- or not -- so will be any other U.S. anti-discrimination laws, it was pointed out. This seemed to add a new light to the cause, as discrimination on the basis of race was mentioned as a practice that could not reasonably be barred using the Civil Rights Act of 1964 if the anti-discrimination law for Americans with disabilities is found inapplicable to a foreign-flag ship. If this civil rights law does not apply to these ships, no other one will.

Ah, let me help you with a way to get around that pesky problem, Justice Scalia indicated to the lawyers for the cruise line. "Why don't you draw that line?" he said, suggesting that because the ADA requires physical changes to the structure of vessels for compliance, there might be some neat way to not discriminate for everything but that which requires actual change. Sell everyone a ticket, and let them sort out who can get up the stairs to where the lifeboats are on their own.

A decision is expected from the court by July.