Like peanut butter and chocolate

Two great tastes -- together. Summer is the season of guest blogging and Bint of My Private Casbah is at Feministe this week. How delicious is that?

Kevorkian's Big Lie

This is written by Diane Coleman, president of disability rights organization Not Dead Yet, from an op-ed in the North Country Gazette:

Every time the courtroom doors opened during Jack Kevorkian’s weeklong trial in 1999, security guards allowed two wheelchair users to enter and sit in designated spaces, as well as three disabled but walking advocates, all representatives of the group Not Dead Yet. We rotated the opportunity to be in the courtroom among about 40 disability activists who came from several states to represent the majority of Kevorkian’s body count, people with non-terminal disabilities.

Kevorkian had been quoted in Time Magazine to say he would love to debate the critics who charge that he is too hasty in deciding who may die. “I will argue with them if they will allow themselves to be strapped to a wheelchair for 72 hours so they can’t move, and they are catheterized and they are placed on the toilet and fed and bathed. Then they can sit in a chair and debate with me.”

In response, our leaflets simply stated, “We’re here, and we demand the equal protection of the law: Jail Jack.”

Kevorkian claims involvement in over 130 deaths, and it’s been irrefutably documented in such respected publications as the New England Journal of Medicine that over 70% were not terminally ill, and 70% were women. Many disability rights advocates view him as a serial killer of people with disabilities.

Read the rest here.

Why is this important now? Because Kevorkian was recently released from jail and the misinformation about his actions and motives continues.

I do believe reasonable people can disagree about the issue of assisted suicide, provided they understand fully the inequality of providing the "freedom to die" for a class of people routinely denied basic freedoms to live. But Kevorkian has no place being named a hero for his actions.

Cross-posted at Echidne of the Snakes

Poetry Monday: Eli Clare

Eli Clare has a book of poetry coming out through Homofactus Press. The Marrow's Telling: Words in Motion. Here's testimonials on the new book from some other talented people, plus info on ordering and an excerpt from a poem in the collection.

Back in April, I linked to a speech Clare gave about disability rights and transgender issues. This is one of the amazing poems included in that speech to illustrate the points made:

HOW TO TALK TO A NEW LOVER ABOUT CEREBRAL PALSY
by Eli Clare

Tell her: Complete strangers
have patted my head, kissed
my cheek, called me courageous.

Tell this story more than once, ask
her to hold you, rock you
against her body, breast to back,

her arms curving round, only
you flinch unchosen, right arm trembles.
Don’t use the word spastic.

In Europe after centuries
of death by exposure
and drowning,
they banished us
to the streets.

Let her feel the tension burn down your arms,
tremors jump. Take it slow: when she asks
about the difference between CP and MS,

refrain from handing her an encyclopedia.
If you leave, know that you will ache.
Resist the urge to ignore your body. Tell her:

They taunted me retard, monkey,
defect. The words sank into my body.
The rocks and fists left bruises.

Gimps and crips, caps
in hand, we still
wander the streets but now
the options abound: telethons,
nursing homes, welfare lines.

Slumgullion #39 -- The Jack's Back Edition

Yes, some coverage of Kevorkian's release and the assisted suicide debate:

Colleen Carol Campbell at the Ethics and Public Policy Center -- "Disturbing Lessons from the Case of Dr. Death":

In America, the "futile care theory" that says resources should not be wasted on patients with poor prognoses is gaining traction; the theory's applications can be deadly. In 2005, 11-year-old Haleigh Poutre had been hospitalized for only eight days when her Massachusetts state custodians began fighting to remove her ventilator and feeding tube. Doctors had diagnosed her condition as a persistent vegetative state, but Poutre recovered before they could euthanize her.

Most Americans believe that the terminally ill should be free to reject excessively burdensome treatments with dubious benefits or unreasonable costs relative to benefits. But laws that propose suicide as a solution to human suffering reinforce the message that the disabled, depressed and severely ill are burdens who can find dignity only in death.

David Kessler at The Huffington Post -- "Paging Dr. Kevorkian":

So I do understand the argument of why not regulate it and make it safe; but, I also remember whenever we haven't been able to achieve something such as when we couldn't go to the moon, we didn't say -- well, we can't do it so let's just blow it up. Or, before we could successfully do heart or kidney transplants we never said not let's keep trying; let's just let them slip away quietly. Our answer should never be, if we can't improve care -- let's find a way to help them die quicker.

At F.R.I.D.A. (Feminist Response In Disability Activism)-- "FRIDA members on Jack Kevorkian":

I've just seen a list of Jack Kevorkian's assisted suicides, and the vast majority of them are women - at least 70% of them. Many of them were not terminally ill. One of the women that he helped to die is Judith Curren - she was 42 and suffered from chronic fatigue syndrome. During the weeks before her suicide, she was assaulted by her husband. Perhaps this experience and her despair may help to explain why she wanted to end her life.

I am surprised that the gender element is missing from analyses and commentaries in the press.... Why is it that more disabled and ill women want to die than men? Gender doesn't seem to part of the analysis in the press at all.

Apparently, the National Organization of Women, amongst other feminist organizations, support the availability of assisted suicide. But there are also feminist arguments against it.

Mitch Albom in the Detroit Free Press -- "A face-to-face with a defiant Dr. Death":

He likened what he had done to a doctor who had to cut off a patient's leg to get rid of cancer. "Unfortunately, the patient must lose a life to end the suffering."

As we spoke, I heard intelligence, self-assurance, even arrogance. What I didn't hear was humanity. He didn't seem to think much of the human race. He likened life to "a tragedy." He quoted famous people saying they wouldn't bring babies into this world. When I said that would wipe out mankind, he said, "What's wrong with that?"

I began to sense a man who was more interested in death than life. Death was his academic passion, and sick patients were part of that academic pursuit, like lab rats.

Australian academics suspended over criticism of thesis on laughing at the disabled

A short summary of the story from The Courier Mail:

TWO academics have been suspended without pay for six months for criticising a thesis which they said poked fun at disabled people.

John Hookham and Gary MacLennan, both senior lecturers in creative industries at Queensland University of Technology (QUT), criticised the PhD work in an April article in The Australian newspaper.

The thesis is a film starring two intellectually impaired men and is entitled Laughing at the Disabled.

The academics said the men were put in cruel situations they did not understand - one in which they were sent to a rural pub to tell locals they were looking for romance, provoking advances from a drunk woman.

They said the scenes provoked raucous laughter at a university screening.

"The purpose of humour is not just cruelty ... we don't think it's funny to mock and ridicule two intellectually disabled boys," the pair wrote in the article.

An excellent detailed report from The Australian:

The project had been developed in conjunction with the disability group Spectrum and the two men depicted in it as well as their parents were comfortable with the idea, having had experience with Noonan in the making of Unlikely Travellers [a film about a group of disabled people who had gone to the Sahara Desert, which has been purchased by the ABC and will be screened later this year].

In addition, the university's ethics committee had cleared the project.

But after seeing the rushes, MacLennan, a lecturer at the university, said: "I have a handicapped child and I pray to God that my child never comes into contact with someone like you." Also present was Hookham, who questioned the use of disabled people.

That night, Noonan emailed MacLennan and Hookham, asking them to expand on their responses.

MacLennan emailed back, saying: "It's quite simple, Michael, I was brought up by my mother - one of the uneducated Irish peasantry. She was the best human being I have ever met. She taught me not to mock the afflicted. I had to go to a university to see the mocking of the afflicted being celebrated under the spurious rubric of 'post-structuralism'."

A few weeks later, Noonan gave a lecture that involved scenes from Unlikely Travellers, and at the end of his lecture he explained that the two disabled men involved in the film were present. Indeed they were, and they answered questions from the class. What happened next depends on who you listen to.

According to various blog entries written by students, some of them found the experience positively challenged their view of the disabled, as here were two men quite open about their disabilities and prepared to speak openly and honestly.

But others claimed the experience shocked and embarrassed them.

Here's a round-up of some bloggers on the events.

Here's a link to some videos on the academics' position, an excerpt from Noonan's previous work Unlikely Travellers, and some disability advocates on the controversy.

Thoughts?

Things that crack me up, #30

Versus. . . .

Squirrel goes on rampage, injures 3

Thu Jun 14, 10:42 AM ET

BERLIN (Reuters) - An aggressive squirrel attacked and injured three people in a German town before a 72-year-old pensioner dispatched the rampaging animal with his crutch.

The squirrel first ran into a house in the southern town of Passau, leapt from behind on a 70-year-old woman, and sank its teeth into her hand, a local police spokesman said Thursday.

With the squirrel still hanging from her hand, the woman ran onto the street in panic, where she managed to shake it off.

The animal then entered a building site and jumped on a construction worker, injuring him on the hand and arm, before he managed to fight it off with a measuring pole.

"After that, the squirrel went into the 72-year-old man's garden and massively attacked him on the arms, hand and thigh," the spokesman said. "Then he killed it with his crutch."

The spokesman said experts thought the attack may have been linked to the mating season or because the squirrel was ill.

h/t Pandagon

Photo description: These two pictures did not come with the story and are not actual photos of man or squirrel in question. The first is of a thin old man with a white beard using two wooden sticks as canes as he walks across a broad city square. The second is a picture of an actual squirrel photo-shopped with a zipper down his chest so that he appears to be wearing a squirrel suit. He's got a skull t-shirt on underneath his fur.

Wheelie hockey

Picture credit to omni1 at Flickr

Visual description: This is a colorful drawing of wheelchair street or floor hockey. A central court has four players in wheelchairs with hockey sticks and a ball being batted around. The goalie is a nondisabled girl. Players are smiling and a half dozen people around the perimeter of the court have banners and are cheering with arms in the air. Lots of drawn textures: a gray stone wall, the goal net in mesh blue, a stripey carpet to one side of the court and a green stone floor on the other side. At bottom, the caption written on the drawing "Going for Gold. Gold Medal".

Things that crack me up, #29

"This is a job for Blindness Girl!"

And, her resume explained by Steve Kuusisto at (where else?) Planet of the Blind.

Pedro Guzman

This is a story that's been floating around for the past week. Penny covered it, and Belledame at Fetch Me My Axe has too. From the ACLU press release:

U.S. Citizen Illegally Deported From Jail Is Missing in Mexico

ACLU and Law Firm Seek Federal Help to Find Developmentally Disabled Man

Monday, June 11, 2007

LOS ANGELES — Federal immigration officers and the L.A. County Sheriff's Department illegally deported a U.S. citizen last month, the ACLU/SC has learned. He is missing in Mexico, and today the ACLU/SC and the law firm of Van Der Hout, Brigagliano & Nightingale file a lawsuit in U.S. District Court seeking his safe return.

Pedro Guzman, 29, was born in Los Angeles and raised in Lancaster, California. He was serving time at Men’s Central Jail for trespassing, a misdemeanor offense, when he was deported to Tijuana May 10 or 11. Mr. Guzman is developmentally disabled, does not read or write English well, and knows no one in Tijuana. He declared at his booking that he was born in California.

He spoke to his sister-in-law by telephone from a shelter in Tijuana within a day of his deportation, but the call was interrupted. Family members traveled to the city in an attempt to find him and have remained there, searching shelters, jails, churches, hospitals, and morgues.

There are no circumstances under which government officials may deport a U.S. citizen. Federal officials have refused requests by family members and a private lawyer to assist in the search for Mr. Guzman.

"This is a recurring nightmare for every person of color of immigrant roots," said ACLU/SC legal director Mark Rosenbaum. "Local jail officials and federal immigration officers deported the undeportable, a United States citizen, based on appearance, prejudice, and reckless failure to apply fair legal procedures."

"What has happened to Pedro Guzman is a tragedy," said Stacy Tolchin of Van Der Hout, Brigagliano & Nightingale. "His life may be in danger, and the government must act immediately to locate him and return him to the United States."

Jail and Department of Homeland Security officials failed to identify Mr. Guzman’s disability and improperly obtained his signature for deportation from the United States. "The procedures for determination of legal status implemented by Los Angeles County deputy sheriffs … fail even minimal criteria for constitutional due process," the lawsuit states.

Sheriff's deputies trained by U.S. Immigration and Customs Enforcement conduct immigration checks at L.A. County jails. The ACLU and immigrant-rights groups warned that involving local law enforcement in immigration policing would lead to mistaken deportations and violate the due-process rights of inmates.

Anyone with information about Mr. Guzman can call the ACLU/SC at (213) 977-9500.

As noted at And We Shall March:

Guzman, a Southern California native, was abandoned in a place where he knows absolutely no one, with no money and without cognitive ability to get himself back to his home. As of right now our government won't even formally ask Mexican officials to search the morgues. That's how little care is extended for someone who is not a missing white girl.

There are no circumstances in which government officials may deport a U.S. citizen.

One in Seven

I just added to my sidebar the above icon and link to Lady Bracknell's most excellent "One in Seven" post from the 2006 BADD (Blogging Against Disablism Day). I hear that Trinity made the icon, which is lovely. For all the easy info to add it to your own site, go here.

Visual description of the icon: It's about an inch-and-a-half square. A sans-serif number seven fills the square in a forest green shade over a much deeper blackish-green background that flares to bright kelly green closest to the number. In white text over the number are the words "one in seven".

Disability Blog Carnival #16 at PilgrimGirl

I'm really, really excited about Jana's presentation of the carnival, up today at PilgrimGirl. The theme is "Borders" and there is so much rich material linked to there, as well as an excerpt from a piece of Jana's writing on Gloria Anzaldua's Borderlands. Check it out.

The next carnival was scheduled for David's, but since he's off on an exciting, unexpected trip to Costa Rica (!), the Kuusisto's are hosting #17 at Planet of the Blind on Thursday, June 28. I hear that the theme will be "Laughter, The Best Medicine." Deadline is Monday, June 25, and further info on submitting is available at the carnival site here.

Visual description of the carnival icon above: Penny made this several carnivals ago and being a thorough historian she describes it herself: "The image is from an 1803 etching by Robert Dighton, depicting Brook Watson (1735-1807), an English merchant and politician who lost his lower right leg to a shark attack in his youth (while swimming off the coast of Havana, Cuba, in 1749)." It's a color drawing of an old man in profile, wearing a brown coat and knicker pants. His right leg is amputated below the knee, and replaced with a wooden peg. The other leg has a bandage on it and he is using a cane. The words "Disability Blog Carnival" are superimposed over his middle section.

Movie review: Notes on a Scandal

Along with Testament, Penny mentioned in comments of an earlier review of mine that Notes on a Scandal, the 2006 psychological drama that scored four Oscar nominations, has a child actor with Down syndrome in the cast. Penny said:

Child actors with Down syndrome occasionally have small roles in films where their visible difference is not much commented upon, nor does it become a major plot point. I'm thinking of Testament (1983), for example, and last year's Notes on a Scandal. Both smaller, serious dramas, with women in the leading roles--maybe that's no coincidence?

I got a chance to see and write about Testament last weekend, and now I've seen Notes on a Scandal too. Unlike in Testament, where the child with Down does not seem to be used as a signifier of anything else within the plot, I do think Ben, the 12-year-old son of Cate Blanchett's character, Sheba Hart, carries more symbolic meaning than the average nondisabled child in an adult drama. But the story is emotionally and psychologically dense, so he doesn't simply stand for unspoiled innocence, or parental sacrifice, or unruliness, as developmentally disabled folks frequently do in fictional stories. I think Ben, played by Max Lewis, does symbolize all those things, but there are also some great family scenes where I think his presence is fully integrated and normalized in ways rarely seen in film.

Based on the novel by Zoe Heller, which was on the short list for the Man Booker Prize back in 2003, Notes is about two women: the aging, bitterly lonely lesbian history teacher, Barbara Covett, played by the fabulous Judi Dench, and Sheba Hart, the straight, married art teacher who has an affair with a 15-year-old student. The events of the story are narrated as Barbara keeps a journal of her obsessive relationship with Sheba, and she's a captivating and disturbing "unreliable narrator" in the tradition of Holden Caufield or Humbert Humbert. (For full coverage of the movie's complex psychodrama -- complete with spoilers -- check out this review at Blogcritics.)

Upon meeting Sheba's family -- her much older husband, teenage daughter and Ben -- Barbara caustically refers to the children as "a pocket princess" and "a somewhat tiresome court jester." Barbara's desire for Sheba and jealousy of her family life leads her to manipulate events to break Sheba from her family. Her last name isn't "Covett" for nothing.

Two of the film's most dramatic scenes hinge on the role Ben plays in his mother's life. After a tryst with her underage lover, Steven, in her art studio behind the family's London flat, Sheba first waxes nostalgic about a Siouxie and the Banshees' album Steven sees. When he then picks up a wizard's hat Sheba is making for Ben's upcoming school play and jokes about such a childish thing being for a 12-year-old, Sheba tells him her son has Down syndrome. It's a sobering moment for the characters, filled with complex subtext: she hadn't told Steven about her son's disability, Steven is the picture of boyish youthful perfection, she's long past her carefree punk rocker days, Ben represents her life's realities.

In another scene, a grief-stricken Barbara has just left her beloved cat at the local vet to be euthanized when she flags down a car loaded with the Hart family on their way to Ben's school play. On the sidewalk, Barbara demands Sheba stay with her and abandon her family plans, suggesting she will reveal Sheba's illegal and adulterous behavior if she doesn't get her way. The choice would be wrenching without it involving a developmentally disabled child, but Ben is used specifically to ratchet up that effect (very similar to the blackmailing of the father of a very ill daughter in Derailed, by the way).

I mentioned that developmental disability in fiction often symbolizes an unruliness in life. A classic example is Lennie in Steinbeck's novella Of Mice and Men, where the developmentally disabled man accidentally kills animals and a woman with uncontrolled physical strength. In Notes, I think the unruliness Ben represents is equal parts adult disenchantment with life's realities and joyous familial free-spiritedness. Sheba, describing to Barbara how she fell into the affair with Steven, says:

This is going to sound silly, but something in me felt... entitled. You know, I've been up to my head all my life, a decent wife, a dutiful mother coping with Ben. This voice inside me kept saying "why shouldn't you be bad, why shouldn't you transgress? I mean, you've earned the right."

And on disenchantment more generally:

My father always used to say... you know, on the tube...? "Mind the gap." ....It's just the distance between life as you... dream it and... life as it is.

Again, any family with all it's adult obligations would serve to illustrate this, but Ben is used to intensify the effect. This may not be an inaccurate portrayal, but it does seem to be the main or sole dynamic signified by children with developmental disabilities (physical ones, too) in fiction.

Yet I think Ben offers more complexity than that, even on the theme of unruliness. Barbara is attracted to Sheba's bohemian artsy-ness and describes her as "different" from her other colleagues at school. They first meet when Barbara steps in to help Sheba with an altercation between two students -- an unruliness Sheba cannot manage on her own. In thanks, Sheba invites Barbara to lunch with her family, where Barbara finds herself observing casual family intimacy that includes a ritual after-lunch family dance. Young Ben is a key part of this free-spirited unruliness, the happy abandon of family togetherness that best reveals the loving connections Sheba endangers with her affair and Barbara threatens with her jealousy.

Penny wondered, in her comment quoted above, if "both smaller, serious dramas, with women in the leading roles--maybe that's no coincidence?" I don't think it is a coincidence that films centered on women's stories seem to portray parenting of children with Down syndrome more realistically than we've historically seen. (Take that observation for what it's worth -- I'm a student of disability in fiction but I'm not a parent and don't currently spend any time with children with developmental disabilities.) But I also think that the portrayal of these children, in Testament and Notes, by children who actually have disabilities is a function of the roles being small and not competitive roles for established actors. Adult developmentally disabled characters are typically played by nondisabled actors because some well-known star gains prestige from the role.

Admin notes

I've added some new blogs to the sidebar:

Andrea's Buzzing About
Big Noise
Bums & Bellybuttons
Rolling Around Life
The Seated View
Witticisms

Also, I've changed my name under my Blogger profile. It has read "Blue/Kay Olson" and now reads simply "Kay Olson." I'll answer to either still, or Blue Lily, which is the longer version of my feminist bulletin board name over the years. I was also Blue Girl at the Ms. Boards before they were deleted.

Finally, summer is here and the weather is mostly quite fine. I smell increasingly intermittent posting coming on, but that's a good thing. It means I'm out enjoying life.

Because

Penny tells me it's Peter Dinklage's birthday today:






















































Photo descriptions: There are five photos of Dinklage (My Imaginary Boyfriend). The first is a publicity shot for the sci-fi series Threshold where Dinklage wears a leather jacket over a dark red shirt. The second and third photos are from The Station Agent. In the second, he's standing on some railroad tracks with a suitcase next to his feet and the train tracks disappearing into the distance behind him. In the third, he's sitting in a doorway at the top of a few stairs with a woman and they're leaning toward each other to kiss. In the fourth photo, he wears a tan three-piece suit and stands at a podium in a courtroom. I think the photo is from Find Me Guilty. In the fifth photo, Dinklage sits at the edge of a table wearing blue jeans, a white undershirt and an unbuttoned dress shirt. His hands are in his pockets and his hair is tousled. Mmmm. The last pic is in black and white, as is the photo on the railroad tracks.

Happy Birthday Peter!

Movie review: Testament

In the comments to my review of the movie Tiptoes, Penny mentions a 1983 movie called Testament for it's portrayal of a child with Down Syndrome:

Child actors with Down syndrome occasionally have small roles in films where their visible difference is not much commented upon, nor does it become a major plot point. I'm thinking of Testament (1983), for example, and last year's Notes on a Scandal. Both smaller, serious dramas, with women in the leading roles--maybe that's no coincidence?

I ask:

Do you think the kids in them are just kids or does their Down Syndrome symbolize something about the mothers' lives?

And Penny answers:

Well, in Testament the boy's mother isn't in the story--he and his father are among the secondary characters, neighbors to Jane Alexander's lead character. I haven't seen it in years, but my memory is that his Down syndrome isn't "symbolic" of anything--they're presented as another ordinary, decent family, father and son, in the aftermath of a nuclear disaster. The film's tagline was "Imagine a day like any other. The children are fighting, the refrigerator is humming. Highways are jammed, playgrounds are filled. Everything is perfectly normal... For the very last time."

But as I'm reading now, the boy's name is Hiroshi--probably a reference to Hiroshima. Oh, hmm, now I feel like I have to track it down and watch it again. No hardship, it's a good film.

I saw Testament on dvd this weekend and I'd agree with Penny's characterization of the boy in the film. Hiroshi's father runs a gas station and Hiroshi is one of a couple orphaned children the main character, Carol Wetherly, takes in to care for -- along with her own three kids -- after nuclear bombs dropped across the U.S. leave her small northern California city intact but vulnerable to radioactive fallout from nearby San Fransisco. It's a grim story despite the fact that the tragedy is sparely shown. There are no bombed-out buildings and very few grisly details of radiation poisoning rendered. The politics of the attack is beyond the intimate scope of the story. This is about the slow quiet death of a community and it's people.

Hiroshi is well-loved by his father and treated with kindness and friendship by the other characters in the film. His Down Syndrome is noted at the beginning, briefly, when one father assures Hiroshi's father that it is basically unimportant and the child is always welcome in the Wetherly home. Hiroshi's part is small in the film, but he's not ever treated as unimportant, expendable or unloved as famine and illness strike the community. And from what I can tell through Googling the name "Hiroshi" it seems that it is a perfectly ordinary and perhaps common Asian (Japanese?) name not meant as any reference to the bombing of Hiroshima in WWII.

Jane Alexander was nominated for an Academy Award for her portrayal of Carol Wetherly. Lukas Haas, who plays her youngest, appeared in his first film here, and Kevin Costner and Rebecca De Mornay also have small but poignant roles.

Hiroshi is played by a young actor named Gerry Murillo who has not acted in any film since. Murillo does have the facial characteristics of a child who could have Down Syndrome, so it appears that this is a film where a child with developmental disabilities was hired to play a child with developmental disabilities, and that he is not symbolic of anything else within the story.

How fast does that chair go?

Or: "Don't break the speed limit."

Ah, the clever things people say to you when you use a wheelchair.

In Ben Carpenter's case, the answer would be "50-mph":

Paw Paw police said the semi hit Carpenter's wheelchair as he was trying to cross from the north to south side of Red Arrow at Hazen Street at about 3:30 p.m. The driver of the truck, a 52-year-old Kalamazoo man whom police have not named, told authorities he'd been waiting at a red light and didn't see Carpenter. When the light turned green, he proceeded west on Red Arrow.

"I made a mistake," Carpenter said of his decision to cross the road. "A big mistake."

Carpenter said after the truck hit him, his wheelchair somehow turned frontward and its handles became stuck in the truck's grille. From there, police estimate, the truck reached speeds of 50 mph before pulling into a Ralph Moyle Inc. trucking facility in the 39200 block of Red Arrow.

"It's a good thing the place was only a couple of miles away," Carpenter said.

Check out the news video of Carpenter's story at MSNBC here.

This story is wild and funny, but being a wheelchair "pedestrian" is dangerous business. Unaccessible or nonexistent sidewalks (or construction without available alternative routes) often require wheelchair users to travel in the street. Even when there are ramps at street corners, they are often not placed so that they can be used without brushing the grill of a car, often a car where the driver is looking the other direction in anticipation of turning into the street. If there's one ramp per corner -- as opposed to one ramp per each side of a crosswalk -- it sometimes means that crossing the street involves flirting with the traffic zipping by on the green light. If ramps aren't maintained when streets are re-tarred, there can be such jarring bumps at the base of the ramp that staying in your seat is even tricky.

I've had my scooter clunked a few times by the bumpers of cars that move while I'm forced to use the ramp practically under their tires. I've even kissed the corner of a bus once. I had the right of way and was busy doing my damnedest not to kiss the underside of it too.

I'm glad Carpenter wasn't hurt. I wish it was safer for all of us out there.

Boys on Wheels

Funny or not so much?


Direct YouTube link here.

The lead singer of Boys on Wheels is Jesper Odelberg and he is a guy with cerebral palsy, as well as part of a Norwegian comedy show. The four-minute video linked above is a montage of rock songs with lyrics slightly altered. For example, the first song is in Norwegian, the second is a spoof on the '80s hit by Norwegian band A-Ha: "Take On Me," instead called "I'm Not Gay." Bryan Adams' '80s power ballad "Heaven" has been altered so the lyrics begin:

Baby, you're all that I want, but you're living on the fifth floor.
I'm finding it hard to get there, in my wheelchair.

Bon Jovi's "Living On A Prayer" is spoofed as "Living In A Wheelchair." The lyrics are provided in subtitles within the video.

Also at YouTube, Boys on Wheels singing "My Balls are OK" and "Making Love in a Handicap Toilet"

Setting the record straight about Jack

The following via email from Steven Drake of Not Dead Yet:

In 1993, Jack Kevorkian told Time Magazine, “If they will allow themselves to be strapped to a wheelchair for 72 hours so they can't move, and they are catheterized and they are placed on the toilet and fed and bathed. Then they can sit in a chair and debate with me."

Kevorkian is talking about us – we're some of the people who were here throughout his trial and conviction for the murder of Thomas Youk. Many of us have similar conditions to people – especially women – who make up the bulk of Kevorkian's body count. We have significant disabilities and chronic conditions.

Given the recent press coverage, this might surprise you, since Mike Wallace and Kevorkian only referenced “terminally ill” people on Sunday night. The Associated Press and the New York Times have been describing his body count this way as well.

They're wrong. In 1997, the Detroit Free Press documented the numbers of non-terminally ill people who died in his hands in the series “The Suicide Machine.” This was reaffirmed later when the results of a study were published in 2000 in the New England Journal of Medicine.

The press hasn't played into such blatant misinformation in such a big way since they gave the Bush Administration a “pass” on its suggestions that Saddam Hussein was responsible in some way for 9/11.

Jack evaded us at his trial – living up to his word has never been a strong point with him. We're here now – to challenge him, his allies, and the press who keep passing off their lies and misinformation.

Unlike those who found, or were taken to, Kevorkian, unlike those who got death instead of the real supports they could have used to rebuild their lives as disabled people – we’re Not Dead Yet, and we’re here to set the record straight.

Some links:
1993 Time issue with Kevorkian on cover. Table of contents here.
Detroit Free Press coverage of Kevorkian. Scroll down for "The Suicide Machine" series that documents the many people Kevorkian killed who were disabled, not terminally ill.

Poetry: Robert Pinsky

Below is a poem by Robert Pinsky, who served as U.S. Poet Laureate in the late '90s. The new Journal of Literary Disability also has an essay, "Disability Haunting in American Poetics" by Sharon L. Snyder and David T. Mitchell that explores Pinsky's writings on disability in American poetry:

Pinsky’s essay about the thematics of haunting could be found culpable for its own repressions in the midst of formulating a theory of national identity that is based upon eradicating the conflicts of the past. In many of his examples, the haunting of the American poet is identified with the sudden eruption of ‘nightmarish figures’ that disturb the language of poetic revelation. Upon close reading, many of Pinsky’s haunting figures appear marked by cognitive and physical disabilities that upset the more abstract and utopian longings of American ideals. Because haunting operates as a barely discernible phenomenon (a ghostly presence often concretizes an otherwise repressed content), disability, as a metaphor for what Toni Morrison calls “unspeakable thoughts unspoken” (1989, 1), haunts Pinsky’s poetry of haunting. Better yet, the poets of which Pinsky writes may be fully aware that disability is their topic of contemplation, meaning that only Pinsky’s essay can be said to be haunted by the specter of disability.

So, in the above essay combined with Pinsky's poetry on psychiatrists some interesting ideas emerge. Here also, a psychiatrist comments on the poem below.

An excerpt from "Essay on Psychiatrists" by Robert Pinsky:

III. Proposition

These are the first citizens of contingency.
Far from the doctrinaire past of the old ones,
They think in their prudent meditations

Not about ecstasy (the soul leaving the body)
Nor enthusiasm (the god entering one’s person)
Nor even about sanity (which means

Health, an impossible perfection)
But ponder instead relative truth and the warm
Dusk of amelioration. The cautious

Young augurs with their family-life, good books
And records and foreign cars believe
In amelioration—in that, and in suffering.


IV. A Lakeside Identification

Yes, crazy to suppose one could describe them—
And yet, there was this incident: at the local beach
Clouds of professors and the husbands of professors

Swam, dabbled, or stood to talk with arms folded
Gazing at the lake ... and one of the few townsfolk there,
With no faculty status—a matter-of-fact, competent,

Catholic woman of twenty-seven with five children
And a first-rate body—pointed her finger
At the back of one certain man and asked me,

“Is that guy a psychiatrist?” and by god he was! “Yes,”
She said, “He looks like a psychiatrist.”
Grown quiet, I looked at his pink back, and thought.


Read the whole poem here.

The Huffington Post: Disability advocates should get over it

I've got some other stuff to do tonight, but wanted to share the link.

Excerpt:

From where I sit, I don't see how compassion in dying has anything to do with disability rights. For those of us who want to offer dignity to those whose pain can no longer be nursed, the fact that our society too often treats the disabled as second-class citizens also is a powerful assault on our humane sensitivities.

Could the real issue for some disability advocates be that ongoing life experiences have convinced you that able-bodied citizens feel you are "in the way," and that right-to-die types have as the ultimate goal more tools to get you, our disabled brothers and sisters, "out of the way?"

While I don't have the life experience to see things from your perspective, I have to tell the disability advocate community that such a mind-set strikes me as a bit paranoid. I liken it to the fear in some minority communities that some forms of contraception are really efforts at medically sanctioned genocide.

Disability advocates, please understand we right-to-die types are not your enemies. We are your friends.