Part D hilarity

I've started thinking of any mail I receive from the government as a form of comedy. Farce, mostly. I don't take phone calls yet, since I haven't mastered speaking with the trach, so luckily I've had help with the live comedy routine.

Medicare People (whoever they are) called in April and early May insisting I join Medicare Part D, the prescription drug coverage plan. Their calls were really pushy solicitation urging me to commit before the May 15 deadline. My father, who took those calls, informed them that my private insurance has better coverage and I wasn't interested. Basically, they didn't accept no and after repeated calls they said I was automatically signed up, which it seems is the policy for those individuals meeting certain criteria of which I'm not quite clear.

Upon hearing I was automatically enrolled, my father again told the Medicare Person (rarely the same Person twice, of course) I didn't want Part D and especially didn't want enrollment in the program to jeopardize my private coverage. This is when they suddenly claimed I had signed some document last October for joining Part D. Now, honestly, I've had a lot going on since then so I don't remember signing or not signing anything particular, but knowing myself and the fact that I wasn't using any prescription drugs in October it's unlikely I decided to sign (and mail back?) some official document about it.

It's kind of creepy that this document was mentioned so late in their hard sell project though, right? Right as the May 15 deadline was to come.

That call ended with my father again insisting I didn't want Part D and that we would appreciate seeing this document I can't remember. It was on May 15 that I received the notice from Medicare that I wasn't enrolled (or had chosen to disenroll), so that last Medicare Person had apparently given up on coercion and let me opt out as I wished. Meanwhile, the news was filled with seniors who couldn't get the assistance they needed from these People in choosing a plan. Some were busy with me.

On May 18, I received two letters from a private group about my Part D plan with them. The first was to congratulate and welcome me to the plan. The second was to acknowledge I was no longer on their plan because I decided to leave.

On May 25, I got my laminated membership card for the private group plan I was officially disenrolled from.

So, I really have no idea. I haven't called to pursue because it didn't seem urgent to me. Whichever status is mine, it turns out no one can really tell what will save me money and what will cost more. The prescriptions I currently need are not all covered by the plan, of course. Besides, calculating several (OK, many) hundred dollars in prescriptions is small potatoes compared to the circling bills for four months in three different hospitals under rather intensive care, separated by an ambulance and a helicopter ride. (Just for fun, guess how much that latter trip cost.)

It's unlikely this will remain pure comedy, I suppose. And I'll pursue it responsibly in time. We'll see if I'm still laughing then.

Update on 6/17/06: I received a huge packet in the mail today from the company Medicare chose for me, but it's dated May 5.

Katie McCarron and her Grandpa

For details of three-year-old Katherine McCarron's murder, go here, but for the real story of who Katie was, read the words of her paternal grandfather below:
From Mike McCarron:
I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”.
She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

Children's art with disability

Disability World has art from second graders in Capetown, South Africa.

The second graders had been asked to concentrate their wits and paintbrushes on depiction of disability, encouraged to be creative and draw upon their experiences, observations and imagination. The ceremony was addressed by a deaf member of South Africa's parliament, broadcast live on a community radio station and attracted a great deal of media coverage an discusion about attitudes towards people who have disabilities.

Various little announcements

Just some housekeeping and fine linkages here:

• Apparently some comments left here recently have not come through and I've gotten no email notice that they were even made. If you tried, please feel free to try and comment again, and let me know at kay.fine at gmail.com if it fails again. Thanks.
  
• Recently I guest blogged for Echidne of the Snakes, cross-posting my entries on The Da Vinci Code and Voting while Disabled. No comments here at my site, but check out those links to her site where there was some discussion about what I wrote.
• I've been cleaning up my blogroll and adding quite a few new links. I'll continue to do so when I find the time, so if that interests you, keep an eye out for new linkies.
• Finally, The XVI Carnival of Feminists is up at Welcome to the Nut House and the theme is feminism and disability. She kindly included one of my posts, but there are some other great ones you should check out. The next carnival is June 17th at Bitch | Lab.
  

Just the one sash and tiara

Feminists hate beauty pageants. Well, sometimes we (okay, me) watch them with fascination and disgust, but we'd happily trade them for a competition involving actual female rolemodels rather than just models. Yet in the latest issue of Bitch magazine Anna Clark writes (in "Miss Interpreted: Beauty pageants meet their new ideal") that the pageant form adopted in recent years by various groups to highlight social issues just may be a "savvy political strategy."

Clark's key example of the new political potential for crowned queens and their communities is the Ms. Wheelchair America contest, which is open to women who use wheelchairs, aged 21 to 60, and trades in the talent and wardrobe competitions for the ability to speak and lobby for disability-related issues. The reigning queen, Kristen Connors, acknowledges it's not really a "beauty pageant" but that the format itself is part of the point since disabled women are not considered typical beauty pageant material.

The salient question, posited by Clark:

While Ms. Wheelchair America is no doubt a noble untertaking for a notoriously underserved population, is building on the superficiality of mainstream pageants a justification for using the format at all?

(I don't like "noble" in there, but maybe that's just me.) Clark goes on to note that Miss America doesn't represent the average nondisabled woman either and that crowning the most "relatable" and likely traditionally beautiful person of a community is perhaps "the cost of saddling a single individual with all the ideals and virtues of a community, rather than allowing enough room in the spotlight for multiple individuals."

Aside from the fact that I didn't know that Ms. Wheelchair America uses up the one spotlight alloted to disabled people, crowning a queen gimp is hardly why the contest has come to mainstream media attention. Last spring Ms. Wheelchair Wisconsin, Janeal Lee, was replaced by a runner-up after much ado about her not using her wheelchair often enough to qualify for the title. The fascinating real story the mainstream media never mentioned is that the dethroned woman had confronted the state pageant coordinator (who was also the previous year's winner) for her role as a plaintiff in a number of ADA access suits. While cast as the victim of silly pageant rules, Lee's real conflict with the pageant officials was that she prefers a more genteel approach to access than forcing the courts to address the law.

Let me recap: A finalist for the disability spotlight for 2005 made mainstream media news as an unfairly treated (non-litigious) woman, and disabled people are squabbling over who is disabled enough. The subtext: If they can't agree on who qualifies as disabled then why should we be expected to understand and accommodate them?

Just how is this noble trek into mainstream media attention politically useful to disabled people? The "relatable" spokeswoman the media wrote about is the one rejected by the pageant, the one who doesn't want to start any lawsuits, the one who is cast as bewildered and hurt by the rules of the pageant -- and the pageant is cast as a symbol of the disability community. The radically active disability rolemodels end up Othered again in favor of a disability spokesperson that suits the media and culture as it is. (If Lee counts as disabled, that is. If she doesn't, well, problem solved anyway.)

But suppose it is possible to remake the beauty pageant format into an actual political tool that serves disabled people. Is it good enough that the "relatable" queen will likely be physically impaired and never low enough on the subculture's hierarchy to be someone with a mental or developmental impairment? Isn't the whole exercise of choosing an ideal representative the problem with beauty pageants? If feminism's critique of beauty pageants teaches us anything, it's that using our own objectification or idealization as a political tool is a Faustian bargain. We still remain on the outside fighting to get access in.

Disability and LGBT Families

As an ally of LGBT people, I wanted to participate in this blogathon sponsored by Mombian. And as a single-issue blogger, I wanted to incorporate disability issues into my contribution. But here's the thing: You can't be both. LGBT and disabled, that is. If there's much information out there, academic, anecdotal or otherwise about parents who are both LGBT and disabled I have missed it completely.

It's not surprising, really. Google gay parents and you get mostly debates about whether or not LGBT people are fit to parent. Google disabled parents and you may find some support groups for disabled parents, but you'll also find that mostly "disabled" refers to the children being parented. This is especially true for disabled foster children who do not top the list of wanted adoptees, but then usually the gay foster parents are allowed to foster but not adopt.

Interesting, that, eh? The unwanted and the unmarriageable. They are good for each other unless they want to make it official.

As for disabled parents, some have their parental rights challenged because of their impairments. And historically, disabled people have been involuntarily sterilized.

There's been a discussion recently on an online feminist bulletin board I frequent about how women in our culture are expected to have children. I'm unable to relate to this, since I don't have children, don't want any, and our culture doesn't want me to have any either. Once when I was about 20, an absurd misunderstanding between a professor and I led him to believe I had a child. The appalled look on his face was replaced by relief the moment I set him straight. Meanwhile, my nondisabled female peers who go to the gynecologist and inquire about getting their tubes tied because they don't want children either are sometimes referred to psychiatrists because this is abnormal behavior.

I don't have any anecdotes at hand about how exponentially more complicated it is for disabled LGBT parents to be taken seriously. Or, for that matter, nondisabled LGBT parents of disabled children. If you're out there, leave a comment, will ya?

Thanks to Frog for alerting me to this event.

Memorial Day

War = more disabled people

CNN's list of U.S. and coalition force casualties.

Photo gallery at The Memory Hole of military personnel wounded in Iraq and Afghanistan. (Some graphic images)

Iconic image of Marine Lance Cpl. James Blake Miller in Iraq.

Now against the Iraq War, Miller's post-war struggles remain iconic of the military experience in Iraq. His PTSD leaves him currently unemployable and afraid of what he might do during blackouts and violent outbursts.

On estimates of Iraqi civilian deaths, which neither the U.S. or U.K. bother to count.

Saturday Slumgullion #2

For your browsing pleasure (and a way to catalog these posts for myself), here are a number of links to interesting topics:

Crip Chronicles - Coffee for Crips: Teri Adams answers the question of why many disabled people prefer chain restaurants and stores to funky independent businesses.

Broken Clay - Virgin Blue staff will not push wheelchairs: I wonder how people unable to push themselves will get from wherever they are required to surrender their power chairs to their airplane seats.

Ouch! - Turning the Tables: Claire Jennings describes what it's like to wait tables at the London restaurant Dans le Noir, where patrons are served by blind folks and eat in the dark.

Fangworld - Nag for Victory!: Agent Fang is on the road again and cataloging her adventures in "accessible" hotels.

Bert's Mind - My Prayers have been Answered: Bert introduces me to my new favorite word. Criptacular!

Bent -- Flippin' Out: Philip Patston writes thoughtfully about the question of whether he'll ever "flip to straight" and why being gay is a political thing for him. How does this relate to disability? Go and read already, and if you're looking for a place to write about the issues of gay disabled men, consider Bent.

Disability Law - School Board Member: Limit School to "Educable" Students: Sam links to an article about a Wisconsin school board member who I believe qualifies in the competition for Ableist Ass of the Year.

Diane Coleman is sick and tired

This is a must read for anyone (nondisabled liberals especially) with opinions about legalized assisted suicide and euthanasia. Here's an excerpt:

I’m sick and tired of our opponents on this issue, often our liberal or progressive allies on other issues, who over simplify the dangers facing disabled people who depend on others for basic needs. Court appointed and statutory guardians have potential conflicts of interest. The most common are the spouse and adult child, who are also the most common perpetrators of elder abuse. If we were talking about child abuse, everyone would admit that there is a legitimate role for government intervention, carefully balanced against privacy rights. Do people in guardianship deserve less? Nor can we trust state courts as the final word. If we were talking about death penalty cases, most would admit that the courts are far from infallible, and that a right of federal review is an important protection for the constitutional rights of the accused. Do people in guardianship deserve less?

I’m also sick and tired of our allies on this issue, often our conservative opponents on other issues, who see assisted suicide and euthanasia as violating their principles, but see no contradiction as they slash budgets for the health care we need to survive. The Republican Governor of Missouri has cut Medicaid funding for feeding tubes and ventilators, establishing a difficult procedure to get these devices, with most who try to use it reportedly failing to get what they need. Jeb Bush just cut Medicaid coverage for the food that goes in the feeding tube by adding similar burdensome procedures. The irony is not lost on us, but media exposure in Florida put this action on hold. This is nothing less than back door euthanasia. And let’s face it, much of the struggle at the state level flows from federal cuts. Back door euthanasia.

Disability rights groups have a unique perspective, informed by both our principles and our experiences. Our principles embrace non-discrimination, civil rights and self-determination. Our collective experiences include monumental struggles against the crushing oppression of a health care system that devalues us and a society that fears significant disability as a fate worse than death. We are consumers on the front lines of the health care system, facing your worst fears with grace and dignity, yet we have been pushed to the margins and even excluded outright from the debate on these issues.

Via Did I Miss Something?

Memorial for Katie McCarron

She was three years old and murdered by her mom because she was autistic. Please go here.

Voting while disabled

Cross-posted at Echidne of the Snakes:

Today was election day in my small town. There were only three school bond proposals to decide and unfortunately they don't have a chance in hell of passing, but I went to vote just the same. Because I can. I turned down the absentee ballot option because I wanted to go vote at the poll and I was sure access here, at this time, wouldn't be a problem.

With September primaries quickly coming up, the fiasco of Florida's hanging chads still haunting election judges everywhere, and the requirements to provide fully accessible voting for all varieties of disabled people, there's a considerable amount of voting angst among public officials and private citizens who keep up on voting issues.

HAVA, the federal Help America Vote Act of 2002, requires that every polling place in the country provide a voting system that persons with disabilities can use independently and privately. Much voting for disabled people has been known to occur at a table in public, with one or two poll workers assisting with the voting procedure. This system lacks privacy and provides no way for blind citizens to know if the poll workers truly marked the ballot as instructed.

Enter the machines. Since HAVA means every voting district in the country needs some way to meet federal requirements, many business opportunities sprouted for manufacturers of electronic voting machines. But acquiring voting machines that satisfy disability access, voter trust, and accuracy has been a nightmare for voting officials around the country. Citizens are suing the states for better set-ups, states are suing the companies manufacturing the machines for failures of all kinds, and September looks closer than ever.

It seems certain that disabled voters will be the ones to bear the brunt of this problem. In New York City, there will be just five polling places where disabled people can hope to find total access this fall. That's one polling site in each borough for a population of people largely dependent on public transportation that doesn't do well accommodating them either.

One solution to this whole mess that seems to be gaining currency is voting by mail. Absentee voting is being expanded to "permanent" absentee voting and then to "no excuse" absentee balloting and voting by mail for all. Many claim it's a much better system and supposedly many disabled people would prefer to always vote by mail.

I think it's a bad idea. Oh, it might be smart in the short-term while the numerous problems with voting are minimized, but in the long-term it's maybe bad for democracy and certainly bad for the disabled. If the solution to problems of accessibility is to not require anyone to show up, then all the churches and rec centers and other polling sites that are not currently accessible will have less pressure to become so. And all the poll workers who will be trained on how to interact with disabled people to help them vote will never be trained. And all the disabled people who rarely get out of the house because of Medicare homebound laws* and lack of transportation, will have one less reason to interact with the world. All this equals less accessibility and freedom for the disabled in the long-run.

Additionally, I believe the assurance of maximizing privacy and actual casting of the votes disabled people choose themselves can only happen at polling sites. This may be true for many women as well, if they are in coercive relationships. A private vote taken at a public place ensures society's most vulnerable citizens the freedom to make their own political decisions. Should disabled persons require human assistance to vote after all, at least it is legally required that someone impartial -- or two people, one from each party -- assist. If privacy must be sacrificed in any way, as it most certainly will be for many severely disabled people if everyone votes by mail, there should be neutrality built into the assistance.

Of course, voting that discriminates against the disabled hasn't been resolved even with the ADA being 16 years old. There's no reason to expect any future public outcry about voting by mail -- if there is one -- will center on the rights of disabled persons now. But there are other reasons it remains a bad idea.

___________________________________________________

*From an article at New Mobility (italics mine): In 2002, at the 10-year anniversary of the ADA implementation... President Bush (announced), "Today Medicare recipients who are considered homebound may lose coverage if they go to a baseball game--which, of course, I encourage them to do--or meet with a friend or go to a family reunion. So today I announce we're clarifying Medicare policy. So people who are considered homebound can occasionally take part in their communities without fear of losing their benefits."

Cooking up a fallacious (and offensive) comparison

Piny over at Feministe recently discussed my post on the New Zealand murder where the convicted man received a lighter-than-typical sentence for killing a disabled man. He was generous about what I had to say, but he also follows the logic of the problem and shows how smart he is:

In “The Disability Gulag” and assorted other writings, Harriet MacBryde Johnson makes the point that terms like heroic measures and special accomodations can be extremely ableist: they start at a zero/norm of “needs no assistance,” and trend upward through “needs a lot of assistance.” This can be a problem, because it implies that lives like hers exist at an extreme of social obligation; her needs are not given parity, and her life becomes an indulgence. It also means that people most in need of recognition are least likely to receive it.

and

So when a court decides that an assistant has less of a responsibility to hurt disabled people, or decides that sustained contact with disabled people mitigates culpability for murder, the only vulnerability it creates is an “extraordinary” one. This decision poses an enormous threat to people who need caregivers. It defines reliance on caregivers as an imposition on those who provide care–so much so that disabled people may expect violent reprisal for all that “stress.” All of that is invisible, because lives in which caregivers are mundane are invisible.

Then Bob over at Creative Destruction riffs off of Piny's post and things go downhill from there. Cooking up a comparison between disabled people and fetuses, he calls his post "Sauce for the Handicapped [sic], Sauce for the Unborn," and before we know it we're not only comparing the killing of a grown man and former paralympian athlete to abortion, but the resulting comments devolve into a tired debate among nondisabled people about how a person is no longer a "person" (but still "human") when their cerebral cortex shuts down. "Intrinsic value," life support and even animal rights are mentioned. It's very depressing, even more so because this is the first post categorized as "Disability Issues" at that group blog.

(Note to self: Request Feministe add a Disability category to their index so the fine recent discussions over there can be accessed more easily.)

Back to the lumpy gravy. Along with some inaccurate assumptions about what pro-choice feminists (Are there any other kind?) all believe, Bob says this:

The logic that the judge used in ameliorating the consequences of Smail's killing is orthogonal to the logic used by pro-choice advocates. The jump from "it's OK to kill a fetus" to "it's OK to kill a cripple" does not appear to be overwhelmingly large in magnitude. It seems like a fairly tricky endeavour to try to justify one as being obviously acceptable while the other remains a monstrous crime - particularly if you choose to defend abortion but condemn the killing of the disabled. After all, Keith McCormick was never going to get better - was never going to become a full human being in the Singerian ethical sense. But a fetus fairly quickly becomes an independent being with a full life ahead of him or her.

To amuse those who know me very well, I will enumerate my issues with the above paragraph.

Number one: Language, language. "Cripple." Oh, how I wish there existed truly offensive epithets uniquely designed for nondisabled white men that made them feel the burn too. They seem to be the ones who mind the least using other group's slurs to make a point. Why do you suppose that is?

Second. Umm, yeah, it is a huge jump to compare murdering a living breathing full-grown man with family and friends who have interacted with him for decades to abortion of a fetus. The former is here with the rest of us doing all the daily things anybody does and the latter might be here sometime in the future sharing the experience.

The fact that both a quadriplegic and a fetus need some help to survive does not make them equal anymore than it makes a nondisabled person and a fetus equal. A quad needs assistance with most daily activities (and maybe the technology or service animal to help do care for himself) and a fetus needs to feed off the body of another human being for many months until it can hopefully survive in the planetary environment the rest of us exist in, even then with a high level of care. I do think it's fair to compare the level of assistance a person with quadriplegia needs to that an infant needs, but that's not the same as the unborn.

And McCormick didn't have to be looking forward to a cure to value his life as it was, whatever pain it involved -- remember there was no evidence whatsoever that he thought his life should end. Perhaps it's surprising to know that many of us severely disabled people believe our lives have incredible value even if we will never "get better." Health and ability are great things, if you've got them, but they do not create the essence of what is valuable in life.

Third, a fetus does not "fairly quickly (become) an independent being with a full life ahead of him or her." I imagine many, if not most, mothers who bear the brunt of the childraising work would not say that years of assistance is "quick," except in the sentimental sense. Surely no teenager I've known believes their "independence" arrives quickly. I'd argue nondisabled "independence" is myth anyway, but that's for another day. Also, Bob presumes a fetus will be born nondisabled and remain that way when that's really not what the warranty guarantees, so the presumption of independence is pointless.

Finally, philosopher Peter Singer's ethics with regard to disabled people are creepy enough without applying them incorrectly. He doesn't claim to support involuntary euthanasia for persons who are physically impaired but remain mentally unimpaired, and I don't believe he'd support the murder of McCormick as Bob seems to imply. Singer's preference utilitarianism does suggest McCormick's life would have less "utility" than a nondisabled person's life, but a fetus wouldn't even qualify as a "person" in his ethical world so again the comparison fails.

None of what I've argued above -- or, in fact, any disagreement about what Bob says -- about the worth of McCormick's life is debated in the 28 comments that follow over at Creative Destruction. Instead, there's a brief exchange concluding, apparently, that the disability of McCormick has no bearing on the shortened sentence. And then animal rights is brought up, and, oh, go read the rest. The entire debate really is a good answer to the question "What would nondisabled privilege look like?"

Da Vinci Code Redux

Cross-posted at Echidne of the Snakes:

Just over a year ago, I wrote about Dan Brown's piece of literary genius that is The Da Vinci Code, and since the movie is opening this weekend to packed audiences now seems a worthwhile time to refer back to how both literature and Hollywood use disabled people for dramatic purposes. I haven't seen the film, but already know from the trailer that the book's damaging stereotypes remain intact.

Once again I warn: to understand disability stereotypes and simply apply the most likely one here is to make your own spoiler for the story.

There are two disabled characters in Brown's story and -- surprise! -- they are both the villains. One has polio:

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.

This need to establish a certain hinkiness to the character of Teabing not only makes it into the film, it's in the trailer. "What can an old cripple do for you?" Pretty much Ian McClellen's first lines. Also in the trailer, there's a moment where Teabing drops his crutches to lunge and grab an artifact/clue out of the air. While this can be seen as a show of how important the mystery is to Teabing, it's also iconic of the idea that disabled people might be faking their impairments and making fools of everyone. This able-bodied anxiety is part of the stereotypes too, and cleverly, Teabing gets to be like those of us who are actually disabled and living with impairments yet also subject to frequent suspicion about our true identities.

The second villain is an albino man played in the film by Paul Bettany. I mentioned the albinism in my review a year ago, but didn't give poor Silas fair attention. Luckily, Andrew Leibs at Ragged Edge provides the historical context of albinism's stereotypical treatment.

Readers will no doubt recall the stalking Silas, who executes four people in one night doing God's work. Most of the stereotypes common to books and films that exploit albinism are present: red eyes, loyalty that leads to self mutilation and an abusive past that spawns a born-again brutality and proficiency in killing.

It is impossible for one with albinism (most of us detest the dehumanizing word "albino") to read Brown's book and not feel diminished. Knowing that Silas is the only experience most people will ever have with albinism is deeply troubling. Such characters take root in the imagination where there are no positive human images to balance them and thereby they assume great power.

I disagree with Leibs that Silas is the "only" albino experience that most of the nondisabled public will have, but he's dead-on about the depressingly consistent characterization. For an astounding list of how characters with albinism are portrayed, look here. Evil, they are, the pale Satans of Hollywood!

In writing this I learned that albinism creates vision problems and people with this condition are considered legally blind. Isn't it interesting though, how portrayals of evil albinos (all those I can rcall) don't include any pesky vision problems that would hinder their ability to terrorize normal people? Too bad evil albino characters aren't played by actors with albinism. Even if they had to act sighted (and presumably get the same acclaim sighted actors get for acting blind), at least they could sort of represent.

But then, disabled characters aren't meant to be acted by disabled people. That would ruin the Oscar race for all the able-bodied actors. It's no accident that Ian McClellan doesn't have any actual need for crutches and Paul Bettany has real no pigmentation issues. Not that this film is Oscar material if most reviews are accurate descriptions. But really, why take a chance?

New Zealand murderer gets lighter sentence because victim was disabled

In New Zealand last week, a man who stabbed his roommate six times in the neck before slitting his throat has escaped the typical life sentence for murder, receiving instead a maximum of 12 years with possible parole in seven. The judge awarded the defendant the shorter sentence because he suffered from "accumulated stress" and because the victim was disabled.

Keith McCormick, who had won several medals in the Paralympics, was watching TV when his roommate Eric Neil Smail came home drunk and decided to kill him. The fact that Smeal was a part-time caregiver for McCormick helped guide the judge toward leniency despite there being absolutely no evidence McCormick wished to die.

Christchurch Justice John Fogarty told Eric Neil Smail:

"The evidence is that you thought you were doing an act of mercy in a way that minimised any awareness that he was about to die and was being killed."

What a relief to know that if a friend murders you and you remain oblivious to his intentions until it's too late, his life won't be completed ruined.

Judge Fogarty also acknowledged, "It wasn't a suicide pact. The right to life is the most fundamental of our rights and you took that away." Yet because Smail reportedly could not distinguish between his own needs and those of his victim's, Fogarty determined a life sentence was cruel and unusual punishment.

Interestingly, Judge Fogarty, who was appointed to the high court in 2003, has been "an advisor to the Deaf Sports Federation of New Zealand (formerly NZ Deaf Sports Association) for many years and was part of the organising committee for the XVth World Games for the Deaf held in Christchurch in 1989." One wonders if he knew how to sign and communicate with the people he served. Evidently, advising and organizing sporting events for deaf people doesn't involve believing disabled people deserve the same level of fundamental rights as everyone else.

Philip Patston, disabled comedian and managing director of Diversityworks in New Zealand, says:

It won't matter if your victim is successful and enjoying life - if you believe they're in pain and feel bad about it, just "take it on board" and kill them mercifully. You'll feel better.

Representing some popular beliefs, a longtime friend of Smeal has stated that "Being a caregiver, and probably not having the formal training that a person should really have ... it's a lot of stress to put on a person." Which, of course, justifies murder. And in New Zealand apparently provides an interesting method of stress relief.

Oh, to be cool

Nothing too deep today. Here's an article at PhysOrg.com about a federal grant to help Florida State University create greater student diversity in their computer science and information technology program. Notice the subhead, bolded italics mine:

You don't have to be a nerdy white guy to be a computer geek. In fact, you can be a woman, a minority, a person with a disability or someone who is downright cool.

Crip wrestling in Japan

Via Lady Bracknell, here's something I've never quite seen before. Warning: site has lots of crude and offensive language.

The comments at that link are as fascinating as the event itself. Everyone seems captivated and offers a strong opinion. So. Is it just another freak show designed to exploit disabled people or is it something more positive than that, and if so what?

There's no place like home

Today is BADD (Blogging Against Disablism Day), engineered by Diary of a Goldfish. Check out her site for links to the more than 100 bloggers who signed up to contribute to the discussion today.



Everyone knows about the on-going "health care crisis." But what everyone may not know is that for many disabled people this increases the threat of institutionalization because of the structure of private medical insurance and Medicare/Medicaid assistance today. In fact, despite the 1999 Olmstead ruling that unnecessary institutionalization violates their rights under Title II of the ADA, it's estimated that over 250,000 disabled people wish to move out of nursing homes but remain trapped.

In February of this year, the Money Follows the Person initiative was part of an Omnibus Budget bill signed into federal law. Though it's designed to allow people to take their Medicaid funding with them when they move out of nursing homes and other institutions, it's a five-year plan to begin implementation next year and will only cover 40 states. It's a victory against the powerful nursing home lobby, but the big win would be passage of MiCASSA.

Next year is too late for many disabled people confronted by a loss of their freedom now. In West Virginia, long-term vent users are shipped to Ohio as part of a sneaky state policy to save money.

In Florida, the state program for funding home-based health care (a way to comply with the Olmstead decision) has a waiting list years -- perhaps decades -- long. With rising healthcare costs far outpacing funding for the Florida program, over 3,000 people are literally waiting for the 828 people enrolled in the program to die before they have hope of receiving care in their homes. Or they're dying while they wait.

In North Dakota, Nodakwheeler Mark Boatman is about to move 850 miles from family and friends because Montana will free him from the nursing home by covering home-based care if he resides there.

Harriet McBryde Johnson calls the institutions where disabled people are housed the "disability gulag" (better yet, read her book):

The nursing home is the gulag's face for people like Dave, me and Grandmother. That is where the imperatives of Medicaid financing drive us, sometimes facilitated by hospital discharge planners, ''continuum of care'' contracts or social-service workers whose job is to ''protect vulnerable adults.'' Pushed by other financing mechanisms, people with cognitive disabilities land in ''state schools,'' and the psychiatrically uncured and chronic are Ping-Ponged in and out of hospitals or mired in board-and-care homes. For all these groups, the disability rights critique identified a common structure that needlessly steals away liberty as the price of care.

My own story of narrowly avoiding involuntary shipment from the rehab hospital to a nursing home of my private insurance company's choice can't be considered a total victory under the circumstances presented above. I'm not locked away yet. That's the most honest way to explain how it's all resolved.

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.)

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.