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.