Projecting fears

An old post on a nursing blog honestly expresses some thoughts about severe disability. Geena, at Code Blog: Tales of the CCU, talks about her difficulty connecting to patients who are quads:

I have a small problem taking care of quadriplegics. Nurses, I think, enjoy caring for certain types of patients and dread caring for other types. I personally find it of the utmost difficulty to take care of people that cannot move.

Which isn't to say that I don't try my best and do a good job. I can attend to the physical aspect perfectly, but I find that I'm completely closed off emotionally. I always try to keep some emotional distance from every patient (although sometimes get sucked in when I least expect it), but with quads I find myself not only keeping distance, but building a big huge wall.

and

I find it difficult to even look a quad in the eye. I feel as though they are in a place that I can't even imagine, that I can't even begin with empathize with. Whenever I look someone who is a quadriplegic in the eye, whatever is staring back at me is simply too much to take on, and so I don't try.

and

But not being able to move yet being fully conscious... that's too tough. It's almost as if they're telling me with their entire being that I will never be able to understand, so don't bother trying.

To her credit, she also says she has educated herself about other situations in order to relate better to patients and she asks for suggestions of writings about quadriplegia. But the comments to her post include a couple by people trying to help her more directly:

I'm not a book about quads, but I'm the real deal. I broke my neck in a car wreck on April 6th 1975. I just passed my 30th aniversary as a quad.

At 46 I'm still very active and alive. I find it very sad that you can't look a quad in the eyes. Do you think we want your sympathy? We are human just like you, with have feelings just like you. I managed to except the life I faced very early on in my disability. Some never do except it, and thus live a very short misarable life. I have been very fortunate to have my family around me. I was lucky enough to also have found love we a beautiful lady. We hade several great years together. We had different ideas about what I should do career wise, so we went our different ways. She married another quad and they were very happy for the 20 years they were together, until he died.

Also:

Good Afternoon, I am a quad of 22 years who after injury earned bachelors and masters degrees, got married, have a child, and work full-time...

If you seek to tackle the issue, you do not have to identify with a quad as a peer-quad, but rather as a peer in life. I suspect that all peoples’ losses, including quads’, combine to frustrate many, including the quads you have met at an arguable low point. My “losses” and thoughts on them include the objective (walking, self-feeding, orgasm from intercourse), subjective (missed personal goal-setting and those losses outsiders think are important), and the reasons why there are losses, real or perceived, such financial or community resource shortfalls or individual internal motivational factors....

Next, if any person acts like they have lost so badly that they fail to be motivated, I’d have trouble identifying, too. If you fear quadriplegia as if it were a slow death of depravity, perhaps you have not experienced an acquaintance with a fairly “normal” quad (who, by the way, might end up in a hospital with pneumonia BUT with pictures and a story of his/her family), which is understandable in your field.

Geena's perspective is likely the dominant one, and I think it's pretty clear from her description of what she sees quadriplegic bodies are communicating to her (as opposed to the individuals with quadriplegia) that she's projecting her fears of paralysis onto her patients. Though it's surely hard in the setting where she meets quads (in a CCU they are probably often newly injured, trached, and cannot speak), the solution to her problem seems so obvious. Get to know actual people.

Photo source

On ridiculous strangers

Much has been said on various feminist blogs about Nubian's experience with a white woman's curiosity. This encounter, from awake : to : dream, is strikingly similar, I think.

Today my friend Jessica and I were wheeling along the residence walkway towards the main campus when we encountered a middle-aged “mom-type” lady who I often encounter on my way to school. She lives in one of the residence buildings, and I know from experience she is a little inappropriately effusive with me given that I don’t actually know her. [Given the cloud of oblivion, I have usually given her the benefit of the doubt and had not yet marked her for idiocy.]

Jess and I continue on, not truly noticing her until the point when her face completely lights up and she looks straight at us, pulling a camera out of her pocket.

Her: “Oh, wow! Can I just take a picture of you both? It’s so rare to see two people in wheelchairs together and you two look so good together!” She smiles broadly, beaming, clearly enamoured with her own brilliance.

Us: “…”

Like Nubian, I have most often not been able to express my true feelings when surprised with an encounter like these, but awake:dreamer manages remarkably well:

Me: (in my serious-but-deadly voice) “I don’t think that’s appropriate.”

Her: dimming now like a Kosovar power plant: “Oh, of course… yes, I’m sorry…”

Us: (expressions of shock and disbelief)

Her: (apologetically) “I was in a wheelchair for two weeks once when I was at Langara because I [insert irrelevant injury here], and it’s just that I would have loved to have had some company.”

Us: “…”

Her: (mumbling irrelevantly)

Us: (dripping with sarcasm) “Okay. Bye now.” (Wheeling away determinedly)

I wish I had the poise in the moment to tell someone they were being inappropriate. It's a pretty gentle way of telling them off without having to invest too much time in impromptu education.

Saturday slumgullion #4

Lots o' links here:

• Sam at Disability Law reports on an Eleventh Circuit ADA case where standing was denied on a suit about access to a greyhound race track because the plaintiff could not be specific about when he might return to the track. The desire to go (and find it accessible) the next time he wants to wasn't good enough. As if life wasn't unspontaneous enough for many disabled folks, now we have to schedule when we might like to use our civil rights.

• Professor Leonard at Leonard Link reports on a federal court decision in Wisconsin that denies ADA standing because of a bizarre distinction between being HIV+ and having AIDS.

• Shh...Mum is Thinking weighs in on prenatal testing for autism and why she's totally against it. She relates a poignant personal experience well worth the time to read.

• Ragged Edge reports that the move to end electric shock behavioral conditioning for children at Massachusett's Judge Rotenberg Educational Center has died in committee.

• Amy at Diabetes Mine relates what happened on a recent flight when she found herself "diabetically unprepared and forced to 'rely on the kindness of strangers' -- which was not forthcoming."

• Stuart Hughes of Beyond Northern Iraq writes for the BBC about "outsider art" at the Creative Growth center in Oakland, California.

• The Patient Consumer held it's first carnival (or parade, actually) last week. I contributed to that, but there's a new parade -- edition 2 -- coming up for anyone who wants to participate.

• John Kelly at NAG continues to chronicle the fight for freedom from brick sidewalks in Boston by meeting with the local WCBV Channel 5 to show the bumpity-bump pleasure of all that brick from a wheeler's point of view. Good photos.

• Scott at Rolling Rains has been covering the accessibility of his personal travels recently, including the surprise of an inaccesible bed at an otherwise lovely hotel. Look also for the photos of his encounter with some bears near Mt. Baker, Washington.

• Finally, the latest Carnival of Feminists can be found at Ink & Incapability. The next one will be at Figure: Demystifying the Feminist Mystique where the theme will be feminism and career. I think this begs for a disability take on employment from someone -- I don't know the deadline, but the carnival will post July 18.

Concern over new Medicaid proof-of-citizenship law leads White House to talk of exemptions

Rivka at Respectful of Otters is blogging again, which I learned via Feministe.

Last Sunday, she analyzed the new law requiring future and current Medicaid recipients to provide proof of American citizenship to get (or continue getting) benefits. It went into effect July 1 and causes concern because many of the 55 million current recipients will find it difficult or impossible to provide the paperwork state governments now need in order to keep their federal funding. All to avoid the problem of illegal immigrants ciphoning off tax payers money for medical care although, according to The Washington Post, a "federal inspector general's report conclud(ed) that there was little fraud by noncitizens." Rivka says:

This rule affects homeless people who have only a garbage bag full of posessions to their names, and no idea where any of their relatives might be. People institutionalized because of mental illness or mental retardation. Elderly people born before all births were recorded - particularly elderly black Southerners, who were likely to be born at home due to Jim Crow hospital policies, and the rural elderly poor. People who are no longer able to communicate clearly due to disability. They don't have passports. They may not know where they were born, or be able to communicate it to their caregivers.

The trouble of administrating all this falls upon already over-burdened state agencies. Can you say "Republican unfunded mandate," three times fast? Rivka again:

We all know that the Bush Administration and their allies in Congress have never signed on to the maxim, "better that ten guilty men go free than one innocent man be punished" - their Guantanamo policies make it clear that they believe the reverse, many times over. On the domestic side, it's clear that they also believe that it's better for ten deserving people to go unhelped than for one "undeserving" person to receive benefits to which they are not entitled. And yet they, the majority of them, call themselves Christians.

Well, lawsuits have been filed, of course. And yesterday the White House announced it would exempt about 8 million people, mostly developmentally disabled citizens who have never worked and some nursing home residents. It's been noted, however, that homeless people and many foster children will still be among those likely to fall through the cracks and lose health care because they lack documentaion.

I'm always fascinated by the comments when blogs write about policies affecting disabled people and Rivka's post doesn't disappoint, though I don't believe anyone has yet thrown out the always ironic "you'd have to be blind to not see..." as part of their argument. Rivka and others do a fine job covering the interests of those most affected by this policy, but here's a sampling of comments:

Here (in the UK), somebody not getting adequate medical care is headline news, and it provokes embarassing questions for the politicians.

and

I also wonder whether this could be a defensible form of triage. By which I mean: You will always make some sacrifices in treatment. You might deny people lifesaving surgery at age 95, to save money for immunizing 6 year old kids. We do this because the OVERALL benefit is positive, and public health is generally concerned with the overall benefit.

So if this plan is implemented, even if some folks slip through the cracks, if we do a fairly good job of catching most of them, you might attain an overall benefit.

and

As someone who has worked in a public hospital for over a decade, all I can say is "ha!" We're lucky when the private hospitals stabilize properly before sending the patient. Actually, no, we're lucky when they send the patient via ambulance instead of dumping them in a cab and sending them unmonitered and unannounced.

and

We spend quite a bit of money doing expensive procedures on people who have fairly limited life expectancy. As an example, we spend an extraordinary amount of money on trying to keep old, sick, people alive; we also spend an extraordinary amount of money on each ultrapreemie. But I don't want to even discuss good/bad specifics until is is excruciatingly clear that we're talking only on theoretical grounds. And I'm not yet comfortable in that respect: this isn't a theoretical healthcare blog, and I have no desire to be misrepresented as a babykiller.

While I can respect the desire to debate the extremes to see where it will lead you, the theory of sacrificing the old, sick and disabled for the public's greater good (Singer? Anyone? Anyone?) doesn't have to be theoretical. It's been done before. (At that last link, note the second link on righthand sidebar estimating money saved in foodstuffs when those marked as "useless mouths" no longer need to be fed.)

Online Disability 101, part 3

Last fall's New Mobility article on South Park examines why Timmy was voted the greatest disabled TV character over at Ouch!

Why would disabled voters choose an animated, learning-disabled, wheelchair-using fourth grader as "The Greatest Disabled TV Character," a misfit kid whose vocabulary is almost exclusively limited to garbled repetitions of his own name and who scored instant popularity as lead vocalist for a heavy-metal garage band called the Lords of the Underworld?

Read the article. And behold my South Park portrait, using this website. It's fun, but there's no wheelchair option, so I'm animatedly gimpless.

Children's picture used as worst-case scenario

Suppose you posed with your son and two other happy children at poolside for what you thought was supposed to be a local magazine's "Summer" issue. Then this portrait appeared on the cover of a "Maternity" issue with the following headline near the children's smiling faces: "Understanding the Results is Key for Prenatal Screening Tests."

The accompanying cover story details the battery of tests one woman goes through because an early blood test indicated she might be carrying a fetus with Down Syndrome. Nowhere in the story or in the entire issue is there any discussion about raising children with Down Syndrome. The children are apparently on the cover only to underscore the drama of testing for birth defects. Of course, this is devastating and appalling to the parents. Jan (adult in photo, with her son, Nash, up front) includes the address of the magazine, Indy's Child, in her description of these events, in case you want to help her express the inappropriateness of a magazine about children using a picture of children as a worse-case scenario.

Thanks to Penny Richards at Disability Studies, Temple U. for posting about this.

Disabled homeless man set afire after being turned away from shelter

Douglas Dawson, a homeless man, was set afire while sleeping in his wheelchair in downtown Spokane, Washington, and died from his burn injuries last week. Many believed he was a disabled veteran who lost his leg in combat. While that's apparently not true, there is a detail of this tragedy that no one is talking about. Here are two articles remembering the man. But here is a press release from the campaign of the Congressional candidate whose headquarters he was sleeping near. (I've bolded the pertinent information halfway down.):

Homeless Veteran Attacked Outside Campaign Office
Had Been Fed by Campaign Staff
For Immediate >Release:
Contact: Jeremiah Levine (323) 842-1099
June 23, 2006, Spokane, WA
Jeremiah@Votepetergoldmark.com

One legged, homeless veteran Douglas Dawson was lighted aflame by two delinquents this afternoon. Dawson had been sleeping near the campaign headquarters of Peter Goldmark, candidate for Congress from the Fifth District, which includes Spokane. Dawson was sleeping outside the headquarters because the previous evening he was given food, water, and blankets by Goldmark Campaign Manager Jeremiah Levine.

"My staff did the right thing," said Goldmark, "Jeremiah acted selflessly."

After finding Dawson across the street from campaign headquarters, Levine pushed Dawson's wheelchair to the headquarters building, fed him, and gave him blankets. Levine called six shelters in Spokane, and none would help Dawson: five were closed, and the Union Gospel Mission refused. The Mission argued that a disabled person would not be able to perform the chores required of all who sleep at the Mission. The Spokane Veterans Hospital was also not available to treat Dawson.

"This points out that there is not enough care for veterans. We must take better care of our veterans, and better care of our homeless community," said Goldmark.

Levine first met Dawson at 9:45 PM Thursday night. Goldmark had just driven Levine to campaign headquarters when Levine noticed Dawson looking distressed in his wheelchair. When Levine asked Mr. Dawson if he was okay, Dawson explained that he was a homeless veteran who had just been discharged from Deaconess Hospital. Dawson complained that he was out of money, was hungry, and had no place to sleep. Levine provided a meal of baked beans and barbecued beef, as well as blankets from the campaign office.

Once fed, Dawson again complained that he had nowhere to sleep. Levine telephoned the six homeless shelters and was unable to find Dawson a bed. At that point, formerly homeless Goldmark volunteer Dave Bilsland helped Dawson from the sidewalk to grassy area on the north side of the campaign office. Dawson slept there until this afternoon. Goldmark staff continued feeding him. At approximately
12:30 this afternoon, volunteer Ed Meadows charged into the campaign office shouting that a man lying next to the building had been terribly burned, and that the lawn was aflame. One staffer called 911 while volunteers Bilsland and Meadows used a garden hose to put out the fire.

According to MSNBC, police have apprehended two young men who confessed to having set Dawson on fire. In honor of Douglas Dawson, Dr. Goldmark will host a free dinner for homeless people at Goldmark Campaign headquarters this Tuesday evening at 6 PM. The office is at 151 South Washington.

This happens at domestic violence shelters too. Frequently, they're not accessible, but even when they are, staff can be reluctant to admit disabled women because of the house rules that everyone do certain chores. (Nevermind that it's an assumption that a person with impairments can't find some way to contribute.)

My point: If you are disabled, social services designed to aid the homeless or domestic violence victims may very likely turn you away because you are disabled. Other than the above press release, no other news source I can find has mentioned this aspect of the story. Not local news stations, not The Associated Press, not Daily Kos. Why? Because even when the disabled themselves are talked about, disability is invisible.

Thanks to my friend at Gray Goose Watch for giving me the heads up to Dawson's story.

Things that crack me up, #5

This is not remotely disability related. It's just a heap o' fun, discovered via Jill at Feministe. A face recognition program tells you what celebrities you look like.

I'm hoping it's just the glasses that threw the program off:

Me. And Chester Bennington, lead singer of Linkin Park.

Runner-up matches: Jeff Goldblum. Chava Alberstein, Israeli singer and peace activist. Annette Benning. Rose McGowan. Umm, Wayne Knight, Neuman from Seinfeld. Nana Mouskouri. And Jacqueline Kennedy Onassis.

When I lose the glasses, it says I look like Meg Ryan and Larry Flint.

Things that crack me up, #4

Like the auto industry, there seems to be a recent trend in mobility aids that are big, scary-looking, and will be able to four-wheel it almost anywhere. This is the aptly named tank chair.

While it may not look as though it fits my delicate sensitivities, here are ten reasons I need this chair:

1) My cat is not yet afraid enough of all my mysterious equipment.

2) I want to really be noticed the next time I am a bride's maid.

3) Sometimes little children who stare are annoying.

4) I'd like to change the focus of stranger questions from "How fast can that thing go?" to "What's the biggest thing you've ever run over?"

5) Nothing says feminist like driving your own personal tank.

6) With enough horsepower, the width of bathroom doors is irrelevant.

7) I need something to go with my new Doc Martens.

8) Being a bitter disabled person, I find I need a more efficient way to run over people's toes.

9) I want to finally fulfill my lifelong fantasy of being a Transformer.

10) I do not yet stand out in a crowd enough for my narcissistic liking.

Freedom Tower design not so freeing

From MSNBC: "The reworked 1,776-foot centerpiece of the World Trade Center site will be surrounded by groups of steps leading to the entrance, serving as a public plaza and security buffer zone."

Number one stupid architectural idea: Requiring people with mobility impairments to ride an elevator to arrive at the entrance of a building.

My university rebuilt the main library during the years I attended and the new design featured a lowered courtyard leading to the entrance, with the inside foyer's skylight part of a small monument in the main grassy quad, above. The elevator to get to the lowered courtyard was set to the side of the broad, well-lighted stairs and you emerged in a spooky little alcove that always made me wish I had a security escort.

Once in a while someone would pee in the elevator -- a problem which wheelchair users of urban public transportation know is common. Once in a while the sole elevator broke down. If you weren't inside the elevator when it broke down, you could either go home and forget that research paper, or find a library administrator with the rare key for the old ground level doors (which required riding a different elevator inside, to reach). All books in the library required at least this one elevator ride, though about 90 percent of the stacks required an additional elevator inside. And unless you happened to be sitting by the old ground floor exits when a power outage or fire alarm occurred, you had to find a team of volunteers to carry you out -- possibly up and out.

Of course, there are serious security concerns building this new symbol of freedom on the old site of the twin towers. But the architectural experts designing an observation deck on the 102 floor can surely think up an attractive, safe and accessible entrance to the site too.

Things that crack me up, #3

Woman ticketed after disabled bay painted around her parked car.

Via Diary of a Goldfish

Disability and porn

Wheelchair Dancer writes about disability and porn because of a new Spanish porn film called Breaking Barriers that is making some news. Most of WCD's post goes on to discuss "pretenders" and "devotees" (a subject about which, specifically, I have no well-formed opinion), but she does say this about disability and porn:

I'm conflicted.

On the one hand, I think it is important for PWD to be recognised as fully sexual beings. Ellen Stohl accomplished some of this work when she appeared in Playboy in 1987. And wasn't there a fuss! From the disability community -- everything from exploitation to not enough wheelchair -- and from those who oppose porn on principle. On the other hand, while I usually maintain a fairly sex positive attitude and I can understand, even sympathize with the arguments that interpret sex work as a positive choice for some women, I know that sex work is not always positive, that the viewer cannot tell from looking at the image, and that in every day life not every sex worker's rights are protected. This limits my ability to go for porn without many, many reservations.

Except for the understatement of that last sentence, I agree completely with WCD -- I'm conflicted. As for Encarna Conde, the 45-year-old disabled woman who stars in the Spanish film, she appears to have had a positive experience:

"It was very pleasant, though I was somewhat cowardly," says Encarna. Unusually for a porn film, however, Breaking Barriers ends with a serious conversation between Encarna and her producer. "Disabled women have to take steps forward and one should always be happy if one breaks a barrier," she says.

As an undergraduate, I took an elective course called "Human Sexuality" taught by an old guy who had about fifty years experience as a couples' counselor. This was the late 1980s and much of the course was on AIDS and safe sex, but the main focus of all topics was good communication between sexual partners. We listened to a panel which included transsexuals that was very informative. And we saw a film of a man and woman having sex in order to provide, the professor said, a visual so that everyone was absolutely clear on what penis-in-vagina sexual intercourse actually involves. I've since learned from a couple social worker friends that there are, in fact, married people out there who think they have been having PIV sex but have been doing it wrong.

In that same educational vein, especially since strangers and acquaintances have sometimes bothered with questions about disability and sex (and pregnancy and orgasms, etc.), I'm conflicted. Does mainstreaming disabled people into pornography help disabled people? Does it help disabled women be seen as less asexual? Does it educate nondisabled people at all or does it just create a bigger fetish market?

I remember being conflicted about Ellen Stohl 20 years ago too. Of course, porn is an extreme example but I'm skeptical when disabled women stoop to objectifying themselves anywhere in order to participate fully in society as females, which I think is what happens in the Ms. Wheelchair pageants. It can happen in photography too, whether in Playboy or some other forum, if the expression of feminine beauty follows cultural expectations of what is beautiful. The Raw Beauty Project, as a whole exhibit, manages to express individuality without catering too much to mainstream beauty expectations, though I think they downplayed disability to walk that line. I'd love to see the whole exhibit.

Guessing which prescribed medications you can live without

This could be part of Disability 101 also, because it's a classic example of the political issues of being disabled in America. The links cover the TennCare health cuts of last year and how they're affecting people now, but the crisis exists similarly everywhere.

NPR coverage. TennCare now allows only five prescriptions per month, and only two of them can be brand-name medications.

Jeremey Sherrod is one of the pharmacists. He says the last few months have been particularly difficult, especially for the TennCare patients who've had to cut back on their prescriptions.

"You know it's hard to tell them whether to treat their diabetes or their congestive heart failure. Which one are they going to die of the quickest if they don't take their medication? It's like we're making the decision of life and death in a sense, and we're not meant to do that," he says.

(Thanks to Mark Siegel on The 19th Floor for the link.)

TennCare documentary. Nashville journalist and filmmaker Sharon Cobbs' video shows how Governor Bredesen and his administration made the TennCare cuts knowing how much they would hurt, but planned to use the surplus created with these unnecessary cuts to manufacture the illusion of helping people by increasing TennCare enrollment just before the next election. It's a 40-minute video. Watch the first 8 minutes, if you can't watch or listen to the whole thing.

Finally, the Faces of TennCare. Joon Powell documents with photography dozens of people forced to choose which medications they can live without or, dropped from the program completely, simply forced to do without.

Things that crack me up, #2

From the look of the sign, my guess is this is somewhere in Scandinavia, maybe. Where they have a huge alligator problem, of course.

I don't recall where I found this photo, so if someone knows, I'll happily give credit.

Things that crack me up, #1

I like the second one.

Online Disability 101, part 2

A chapter from Lennard Davis' book-- Bending Over Backwards: Disability, Narcissism, and the Law. Freud, Shakespeare, Ally McBeal, the ADA and the courts. How can you resist?

Online Disability 101, part 1

It's summertime and I plan on spending less time blogging for a while. So, this is the first of a series of links to great articles online -- thoughtful pieces about disability, disability culture, disability theory, and disabled folks.

We Are Not A Metaphor: This is a roundtable discussion about the representation of disabled people in American theater, but it applies pretty well to movies too.

Saturday slumgullion #3

Linkfest again:

Canada's MADD (Mothers Against Drunk Driving) has created a 30-second public information spot illustrating how drinking and driving will not only leave you in a wheelchair, it will deprive you of your best friend and your girlfriend as they abandon you for a romantic relationship together. You'll be left to watch from the window of an institution-white room as they lead lives of romance and happiness that you can never have. Commentary at Ouch! worth reading, as well as a more detailed written description of the video, if you need it.

Remember the joy of cartwheels? Rettdevil brings it all back, along with some extra joy of accomplishment as well.

Check out the artwork of Susan Dupor, a Deaf woman who says her work often expresses her "primary visual language."

The 2006 winners at Film Your Issue include a video called "Thumbs Down to Pity" by 19-year-old Benjamin Short. His is the third video clip of the five winners, with the semi-finalists available to view below that.

Million Dollar Bigot, a 19-minute documentary response to Million Dollar Baby. I'd heard about this project quite some time ago, but only saw it recently. If you take the time to watch, see it through to the end for a fun story by John Hockenberry.

Experts call sexual attack "pleasurable" for disabled woman

I don't believe this story really needs any analysis to highlight what is wrong. Some excerpts from the Washington Post:

The parents of a severely disabled woman suing a Colorado Springs school district over a sexual assault at a high school said the district has refused to mediate a civil lawsuit as one of its experts called the attack "pleasurable" for the woman.

Kalie McArthur, now 20 and with an IQ of about 50, was assaulted in September 2004 at Rampart High School by a 15-year-old boy assigned as a peer trainer, said Jeff Weeks, an attorney for the girl and her parents.

The boy, who had been suspended 20 times in the previous year and had a 0.0 grade point average, wasn't screened or trained and spent an unknown amount of time with McArthur, her parents, Cindy Starr and James McArthur said.

and

"A professional hired by the district said the assault was pleasurable, not traumatic," said Starr. "He said it ignited her female desires."

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.

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* 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?