Yeeeeaay!

This makes me happier than I can possibly say.

Planning health care in a disaster

From the Sacramento Bee:

Older, sicker patients could be allowed to die in order to save the lives of patients more likely to survive a massive disaster, bioterror attack or influenza pandemic in California.

It's not how nurses and doctors are accustomed to doing things, nor how Californians expect to be treated. But it is part of a sweeping statewide plan being praised for its breadth, even as it rankles providers who will have to carry it out.

The new "surge capacity guidelines" released by the state Department of Public Health, depict a post-disaster health care environment that looks and feels nothing like the system most Californians depend on.

It provides for scenarios in which patients could be herded into school gymnasiums for life-saving care or animal doctors could stitch up the human wounded and set their broken bones.

The 1,900-page document lays the practical – and ethical – groundwork for local and county health departments, hospitals, emergency responders and any able-bodied health care worker likely to be called upon in a catastrophe.

Striking in its specificity and its frank focus on the need to suspend or flex established laws and to ration health care, the plan is being hailed as a model for the rest of the nation.

You really need to read the whole thing to get a sense of how the plan would simultaneously limit patient protections and provide freer access to care.

Cross-posted at Alas, A Blog

Praying with Lior

I've heard good things about a new documentary film, Praying with Lior, only opening now in a few cities and playing primarily at Jewish film festivals. From the film's website:

An engrossing, wrenching and tender documentary film, Praying with Lior introduces Lior Liebling, also called "the little rebbe." Lior has Down syndrome, and has spent his entire life praying with utter abandon. Is he a "spiritual genius" as many around him say? Or simply the vessel that contains everyone’s unfulfilled wishes and expectations? Lior – whose name means "my light" — lost his mother at age six, and her words and spirit hover over the film. While everyone agrees Lior is closer to God, he’s also a burden, a best friend, an inspiration, and an embarrassment, depending on which family member is speaking. As Lior approaches Bar Mitzvah, the Jewish coming-of-age ceremony different characters provides a window into life spent "praying with Lior." The movie poses difficult questions such as what is "disability" and who really talks to God? Told with intimacy and humor, Praying with Lior is a family story, a triumph story, a grief story, a divinely-inspired story.

It sounds like this could go either way, right? The stereotyping of a child with Down syndrome as closer to God than the rest of us, an inspiration or a burden are themes on developmental disability we've heard many times before.

But filmmaker Ilana Trachtman's motivations as reported by Devorah Shubowitz at Media Rights reveal complexities behind the intent of the documentary:

As Trachtman struggled to focus during a Rosh Hashanah service at Elat Chayyim, a multi-denominational Jewish retreat center in the Catskills, she was mesmerized by the soulfully attentive off-key voice that came from behind her. When she saw the source, a boy with Down syndrome, she was shocked. Lior's praying shattered her expectations of what people with disabilities can do. "He amazed me. He could do something that I can't do -- pray with real concentration in Hebrew and in English. So I stalked him because of my own spiritual curiosity." When Trachtman heard Lior was going to have a Bar Mitzvah, she thought somebody should tell his story on film and shortly after, she decided to be that person....

Audiences may debate whether this photogenic young person's "star quality" sets him apart from other people with disabilities. Some may argue that Lior's integration is dependent upon his recognition by and attractiveness to non-disabled society. Others may think his charisma is connected to his disability. The film certainly brings to the foreground issues of the aesthetics of disability, and non-disability, in film.

Another review at Cinematical also suggests that disability is just one (important) facet of this complex family story about love and religious faith.

Cross-posted at Alas, A Blog

Update: Casting director fired from "Shelter" flick

According to the AP:

A casting director for the horror thriller "Shelter" has been fired after West Virginia Gov. Joe Manchin's office objected to what it termed an insensitive casting call for extras with unusual features that might look inbred.

Donna Belajac Casting's Web site initially advertised the scene as being set in a "West Virginia 'holler,"' but producers Emilio Diez Barroso and Darlene Caamano Loquet said the movie is not set in West Virginia and the state will not even be mentioned.

"On behalf of the entire SHELTER production we regret and are deeply sorry for the very insensitive casting call sent out without our knowledge by our casting director Donna Belajac who has been dismissed from this project as a result," Barroso and Loquet said in a statement issued Tuesday night.

I don't care one way or another about Belajac's firing. It's not a victory for disability awareness if all the brouhaha was because it was offensive to suggest people of a geographical region all look abnormal or disabled. It was the association with abnormality everyone was upset about, not any assumptions about the worth of people who aren't picture perfect.

The movie studio will hire someone careful to not attribute the abnormal "inbred" look of its scary characters to a particular place, and we're all supposed to be placated by that. Rest easy. Be assured that the scary folk in the movie are not "us" and we are not "them."

See previous post here.

Pedro Guzman sues government

From the AP story:

"I will never forget what Peter looked like when he finally returned to the U.S. — exhausted and in terrible shape," said Guzman's brother, Michael. "Peter's life is forever changed by what his government did to him."

His lawsuit, which seeks unspecified damages, was filed in federal court in Los Angeles by the American Civil Liberties Union on behalf of Guzman.

"Not only does Peter and his mother want some vindication, they want to make sure immigration officials understand they can't do this," said attorney Jim Brosnahan, who represents Guzman. "They should have apologized and said they would take steps to make sure this doesn't happen again."

A statement released by Immigration and Customs Enforcement, a branch of Homeland Security, called the incident a "one-of-a-kind case" and added more than 1 million illegal immigrants have been deported since the agency's inception.

See other posts on Guzman here and here.

Cross-posted at Alas, A Blog

Latimer paroled

Through the appeals process, the decision to deny Robert Latimer parole has been overturned:

After seven years in prison for killing his severely disabled daughter, Robert Latimer will be freed on day parole this week.

The appeal division of the National Parole Board this afternoon overturned a parole board decision last December that rejected Mr. Latimer's bid for parole.

The appeal division, following a month-long review, concluded Mr. Latimer does not in fact pose an undue risk to reoffend.

....

In its decision in December, a three-member panel of the parole board concluded: “You could not or would not describe the feelings or thoughts underlying your actions at the time of the offence.... You appear satisfied with the position that you and only you were able to determine her life or death, describing such decisions as beyond the law.”

The appeal division, however, found that although Mr. Latimer was at times unfocussed, he was not unwilling to answer their questions.

“The Appeal Division finds that the Board's determinations in this regard are unreasonable and unsupported. Your responses at the hearing reveal that you did in fact demonstrate insight and were able to explain why you decided to end the life of your daughter.

The appeal division has applied two conditions to his parole: Mr. Latimer cannot have responsibility for, or make decisions for, any individuals who are severely disabled.

See previous post on Latimer here.

Cross-posted at Alas, A Blog

Hollywood casting call for that "inbred" look

From the Pittsburgh Tribune-Review (bolded italics are mine):

The announcement -- which was sent out in a news release and posted on the casting company's Web site -- asked for people with the following attributes:

"Extraordinarily tall or short. Unusual body shapes, even physical abnormalities as long as there is normal mobility. Unusual facial features, especially eyes."

The announcement requests "a 9-12-year-old Caucasian girl with an other-worldly look to her."

"Could be an albino or something along those lines -- she's someone who is visually different and therefore has a closer contact to the gods and to magic. 'Regular-looking' children should not attend this open call.'"

Asked if she felt the characterization might be offensive to West Virginians, [Donna] Belajac [of Donna Belajac Casting] said: "We tried to word it in a way that's not offensive. I hope it's not an offensive thing. It's not meant to be a generalization about everyone in West Virginia. That's why we put that it's in a 'holler' in the mountains."

....

"It's the way it was described in the script," Belajac said Monday. "Some of these 'holler' people -- because they are insular and clannish, and they don't leave their area -- there is literally inbreeding, and the people there often have a different kind of look. That's what we're trying to get."

Belajac said the announcement was not meant to stereotype people from West Virginia. But state officials and a history professor called it "unfortunate" that such unfair views of people are being repeated.

"They clearly are not trying to create the image of a quaint, homespun mountain family," said Kevin Barksdale, assistant history professor at Marshall University in Huntington, W.Va. "Clearly, what they're trying to establish is this notion of the hillbilly monster."

The above casting call is for an upcoming horror film called "Shelter" starring Julianne Moore.

The following one is for a movie version of Cormac McCarthy's The Road starring (ATTN: Brownfemipower!) Viggo Mortensen and Charlize Theron:

It's set in a post-cataclysmic America. The few survivors who were not seared by an unspecified fiery disaster are divided into two classes -- barbaric cannibals or their prey.

Men and woman ages 18 to 50 are needed for eight speaking roles and 30 extras.

Producers are looking for people with minimal muscle tone, long stringy hair and a starved, ravaged appearance. They need men capable of growing a full beard.

Also needed: a thin man of any ethnicity who is missing one or both legs. No previous acting experience is needed for this role.

I have a deep, unnatural love for post-apocalyptic fiction, and I recently read McCarthy's Pulitzer-prize-winning novel and found it as riveting as anything I've ever read. I think McCarthy is the great American author living today, and at least one character in another novel of his has had provoking things to say about disability/deformity. (That excerpt from All The Pretty Horses was one of my 2006 blog posts.)

Regarding these casting calls for the unusual, extraordinary, irregular and inbred, I certainly don't have any problem with disabled actors being part of Hollywood. Bring them on, please. But give them roles with humanity and lives beyond their physical attributes.

The movie "Shelter" is clearly working on the theory that physical oddballs and country hicks are effective monsters that provoke horror for their film. When will we get over this? When will the insult of collecting unusual-looking people be seen as complicated and problematic in and of itself and not just because it might suggest insulting things about a geographical region or particular tribe of people?

Notice also, the odder the better, so long as you have no trouble with mobility. That's pretty specific. What's that about? My guess is they've fine-tuned their idea of the grotesque to mean physically strange, but they don't want any mobility aids distracting from the impact of that strangeness. Or maybe they need creepy people capable of chasing the star?

Thanks to Grace for providing the link to the news article.

It's an honor. . .

Over at A Creative Revolution, The Gimp Parade has been nominated for a Canadian F-Word Blog Award under the category of Best International Feminist Blog. (Thank you, Matt Bastard for the nomination.)

Disability blogs and the blogs of many of our great allies are well-represented throughout the categories. Competing with me in the same category, for example, are Bint's My Private Casbah, Daisy's Dead Air, As The Tumor Turns (Lymphopo/Grannie has kicked cancer's ass so seriously she's decided she doesn't need to blog about it anymore for now, btw), and Ms. Crip Chick, as well as many other people I love and blogs I love to read. Elizabeth's Screw Bronze! is nominated under Individual Blogs.

The first round of voting is now -- February 15-16. The final round of voting will be February 22-23 with winners announced on the 24th. To vote, go to the main nominations page and follow each link on the right sidebar to vote in each category.

And while you're over there, check out A Creative Revolution's fundraising initiative for WISE:

WISE (Wellbeing through Inclusion Socially and Economically) is one of many organizations who have been mightily screwed by Canada's Eww Government's cruel and unnecessary cuts to the SWC, because of the need to toss some raw meat to their socially conservative, classist, anti-woman base. WISE needs your generous help more than ever to continue providing leadership, training, awareness, and advocacy for low income women across Canada.

We know that you would help women in need out of the goodness of your heart - there is no doubt about that. However, to sweeten the deal, we have added a super-fantastic raffle which will entice you to give more!

Many disabled women are in the low income category of women WISE seeks to assist, of course. If the joy of voting for some of your favorite bloggers doesn't encourage you to make a small donation, maybe ACR's prize to the winner of a raffle for donators will get you interested: "It's a pair of fabulous, bodacious, hand-knit Teutonic Titpillows!" (Visual description of the image at the fundraising post link: Just what you might imagine. Two hand-knit plump-but-perky white-girl boobs.)

Cop dumps quadriplegic man out of his wheechair

The story:

Police Suspended for Wheelchair Dumping

TAMPA, Fla. (AP) — Four Hillsborough County sheriff's deputies have been suspended after purposely tipping a quadriplegic man out of his wheelchair at a jail, authorities said Tuesday.

Orient Road Jail surveillance footage from Jan. 29 shows veteran deputy Charlette Marshall-Jones, 44, dumping Brian Sterner out of his wheelchair and searching him on the floor after he was brought in on a warrant after a traffic violation.

Sterner said when he was taken into a booking room and told to stand up, Jones grew agitated when he told her that he could not.

"She was irked that I wasn't complying to what she was telling me to do," he told The Tampa Tribune.

"It didn't register with her that she was asking me to do something I can't do."

Jones has been suspended without pay, and Sgt. Gary Hinson, 51, Cpl. Steven Dickey, 45 and Cpl. Decondra Williams, 36 have also been placed on administrative leave pending an investigation, sheriff's spokeswoman Debbie Carter said.

"The actions are indefensible at every level," Chief Deputy Jose Docobo said. "Based on what I saw, anything short of dismissal would be inappropriate."

He said the officers' actions were an aberration.

Yes, just another story documenting the callous abuse of power by law enforcement. Unbelieveable, but... not, right?

But it's also an example of how inept the media is at covering disability. The Associated Press headline: "Police suspended for wheelchair dumping"

"Wheelchair dumping" is ambiguous, obnoxiously imprecise, and goes for the shock value at the expense of even mentioning the victim involved. "Man dumped from wheelchair by cop" would have preserved the news shock value while also speaking the truth.

In any case, "wheelchair dump" has another meaning. "Dump" (also known as "rake" or "squeeze") refers to the seat angle on a wheelchair. To a seasoned wheelchair user, a story titled "wheelchair dumping" suggests discussion of the intricacies of butt comfort, balance, and leverage to push oneself. To a wheelchair user, the headline is not only insulting, it makes no sense.

The video of the abuse shows the police officer walking behind the man in the wheelchair and abruptly tipping the chair forward so the seat is at much more than a 45-degree angle from normal. Sterner attempts, briefly, to hold onto the arms before falling forward head first and landing hard on the floor. He is then rolled around on the floor and searched before being placed roughly back in his chair. The TV news report showing this video includes footage of Sterner outside, wearing sunglasses and using his arms and hands with some difficulty. He explains to the news camera that he has no feeling from the chest down and did not know at first how badly he was injured from the fall, but thought he might have broken some ribs.

RIP BrainHell

BrainHell died yesterday. He was a husband and father of two on an inevitable journey with ALS.

Image description: A color photo taken by the subject, his arms outstretched to hold the camera for a head-and-shoulders shot. He's a man in his 40s, dark hair, intelligent brown eyes with very arched brows. BrainHell wears a dozen electrode sensors on his forehead, ears and in his hair, with a halo of multi-colored wires encircling his head.

He was honest. Insufferably honest, sometimes. He used his blog to record random personal thoughts and childhood memories, share frustrations about his failing body, provide instructions for his nursing care as his ability to communicate became more difficult, leave love notes to his family, and express anger too.

I was an inconsistent but devoted reader of his blog, and to my knowledge, he never specifically wrote about "disability rights" or "crip culture," but he lived the experience and shared it organically, apolitically. Just two weeks ago, a typical BrainHell entry on the tricky dynamics of intimate personal assistance:

he started out being my best night caregiver. he calls me 'the best in the west' sans irony, and agrees when i say i respect him and would never play games. but once i am helpless in bed, his anger mounts as he accuses me of ringing the bell to toy with him. it frightens me. l wonder if he knows that when he does this, he is acting like the mean rich people told me about. i want to work with him, not ask the agency for someone else.

BrainHell wrote often about inadequate care but, as with everything, he never really bothered to return and provide closure of any kind to the problems or speculations he shared with readers. He was writing about uncertainty anyway, and it would have been an indulgence to readers if he had. I don't believe that was his style.

His Amputation Derby entry of about three years ago seems especially poignant now:

Here's a fun game: what body part would you be willing to part with in exchange for being thereby cured of ALS?

You might think I'd give up an arm and a leg quite happily so that I would not DIE! But people are always trying to get the best deal for themselves, always scheming and calculating...

See, I have this gut feeling, perhaps totally foolish, that I will live long enough to witness a treatment that will stop the progression of the disease.

So, since a stop-cure is coming anyway, why lose a foot over it? OK, actually, maybe losing a foot today would be worth it because, who knows, in five or 10 years when the cure comes around, I may no longer be able to stand up. So yeah, in that case, it might be worth it.

I would never have described him as an optimistic guy. He wasn't hopeful -- just living fully within the grim uncertainties of ALS.

For some time now, his blogging has been brief, often riddled with uncorrected typos, and less frequent. His last words for us, offered posthumously:

ok i'm dead. so what? i partook of much wonder and beauty. you should be so lucky!

We were lucky to have known a bit of him. RIP BrainHell.

Read Bint's memorial.

Disabled in Gaza

From a Reuters report:

By Nidal al-Mughrabi

Reuters - Monday, January 21 02:02 pm

JABALYA, Gaza (Reuters) - Ready to act fast to save his life, Maher Al-Assali's young siblings stand at his bedside, poised to pump air through a hole in the 12-year-old's neck when the ventilator that keeps him alive cuts out.

Since being paralysed in a car accident seven years ago, Assali has depended on a mechanical ventilator to supply his lungs with oxygen. During the electricity blackouts that have plagued the impoverished territory for months, his family used to hook the machine up to a generator at a nearby clinic.

But Israel has cut fuel supplies to Hamas-run Gaza as part of sanctions it says are meant to stop militants firing rockets across the border. The clinic generator has shut down. So now, when the power grid fails, Assali's family keep him alive with a rubber hand pump.

"I am afraid," said the boy in a voice that was barely audible. "I could suffocate while asleep if the electricity suddenly goes off, I am afraid to die."

Gaza City plunged into darkness on Sunday night when the enclave's only power station shut down after Israel closed the borders and cut fuel supplies. The Jewish state has vowed to keep up the restrictions until militants stop firing rockets.

The plant supplies about 30 percent of the Gaza Strip's electricity but almost all power to the main city, where about half the territory's 1.5 million people live. The European Union and United Nations have urged Israel to lift the blockade.

The residents of Jabalya in northern Gaza still have some electricity but Assali's father said power usually cuts out several times during the day and night.

Hamas Islamists who refuse to renounce violence and recognise Israel seized control of Gaza after routing Palestinian President Mahmoud Abbas's Fatah forces in June.

Since then, Israel has opened U.S.-backed peace talks with Abbas but has shunned Hamas and isolated the Gaza Strip.

Clinics and hospitals in Gaza halted all but the most urgent surgery on Sunday for lack of power, and thousands of factors have stopped work. Shoppers have been stockpiling food.

Khaled Radi, spokesman for the Hamas-run ministry of interior, said hundreds of sick patients were at risk because there was no fuel to power generators. He said vaccines for children may soon go off because they cannot be kept cold.

Assali's family say they try to keep someone at his bedside at all times in case the
power cuts out. His eight brothers and sisters and even his cousins help out.

"I'm giving him some oxygen," said his 13-year-old brother Udai as he squeezed the rubber pump in his fist. "I don't want him to die."

Things that crack me up #37

This is a the latest of a series at my blog, usually consisting of an amusing visual image about disability. Visual descriptions are meant to both assist those who cannot view the image well, and encourage discussion when others see something different.


















Visual description: A one-pane comic, drawn very simply. A stick figure stands next to a sign posted on a wall that reads "Third Floor Office" with some Braille just below those words. At the top of the comic: "I learned to read Braille a while back, and I've noticed that the messages on signs don't always match the regular text." The stick figure touching the Braille signage has a thought balloon translating what she reads: "S-I-G-H-T-E-D P-E-O-P-L-E S-U-C-K ... Hey!"

Comic source

h/t to Andrea at Andrea's Buzzing About

Cross-posted at Alas, A Blog

Grand Rounds: Briefing the Next U.S. President

The latest Grand Rounds, a weekly carnival on medical and health blogging, is a collection around the theme of "Briefing the Next U.S. President." Check it out at Sharp Brains.

Cross-posted at Alas, A Blog

How does this political ad compare to that Nike ad?

The recent Nike ad featuring Paralympian basketball player Matt Scott generated lots of discussion here recently. Here's a political ad (link leads to YouTube video which is also described and embedded below) for an Oregonian candidate for Senate that has some things in common with the Nike ad: Both ads feature disabled men, both ads use disability and stereotypes of it to sell their message, both feature camera angles that highlight physical difference. Both use humor. Both feature the disability as a visual surprise at each ad's conclusion.

What do you think? Apart from what I would expect is a general preference for basketball over politics, do you like one ad more than the other? And why?

Here's an article in The Oregonian about Democratic U.S. Senate candidate Steve Novick, his campaign and how it demonstrates progress for the electability of disabled political candidates.

Description of the video from the article:

The Novick ad is a takeoff on the old TV game show "To Tell the Truth" in which three people all claim to be the same person, and it's up to a panel of celebrities to figure out who's the real one. In the ad, three tallish, handsome, buttoned-down actors claim to be Novick, then the camera pans to Novick himself -- or the tip of his head.

"I don't look like the typical politician, but I won't act like one, either," Novick says in the ad. "I will fight for the little guy."

Phoning It In

Last month, the state of Massachusetts issued a report on an August 2007 incident at one of the group homes of the Judge Rotenberg Center (JRC) where, on the basis of a phonecall, two boys were awakened in the night and repeatedly given electric shocks by the adults responsible for their care. If you're not already familiar with the JRC in Massachusetts or the aversive therapy used there on institutionalized disabled children, Mother Jones provides details in an article published this past September.

Eight states pay up to $200,000 per student, per year, to send otherwise "unplaceable" children with autism, psychological and behavioral disorders to the residential institution that uses aversive therapy to control many of its young inmates. Very generally, aversive therapy involves the use of a wide range of unpleasant stimuli to discourage specific behaviors. At JRC, aversives include electric shocks, food deprivation and isolation. On children.

The phonecall that led to the nighttime torture of the two boys turned out to be a prank. From the Boston Globe:

The report says none of the six staff members in a Stoughton residence run by the Judge Rotenberg Educational Center on the night of Aug. 26 acted to stop the harrowing events for three hours, despite ample reasons to doubt the validity of the caller's instructions to wake the boys in the middle of the night and administer painful shock treatments, at times while their arms and legs were bound.

The caller said he was ordering the punishments because the teenagers had misbehaved earlier in the evening, but none of the home's staff had witnessed the behavior that the caller cited. As the two boys' screams could be heard throughout the house, near-mutiny erupted among the other boys, who insisted that the accused teenagers had violated no rules. One boy even suggested the call was a hoax, according to the report by the Massachusetts Department of Early Education and Care, which licenses group homes.

The staffers, inexperienced and overworked, were described as concerned and reluctant, yet nobody verified the orders with central office, nor did anybody check treatment plans for the two teenagers to be sure they were permitted to receive that degree of shock therapy.

The damage was done before the staff at the JRC realized their "error":

By the time a call was finally placed to the central office and staff members realized their mistake, one teenager had received 77 shocks, well in excess of what his treatment plan allowed, and the other received 29. One boy was taken to the hospital for treatment of two first-degree burns.

The full account described by the Boston Globe is harrowing and beyond awful. The result of the state report is the suspension of seven JRC employees. But what I find telling is that because of the state investigation the following changes are supposedly being implemented at the JRC:

• Expanded training for staff -- Many of the suspended employees had been working at the JRC for less than three months at the time of the August incident. High employee turnover is also suggested by Google search of the center, which pops up numerous ads for employment.
• Institution of new telephone verification procedures -- Electric shock orders via telephone will continue to be part of the official procedure of aversive therapy, as is the incredibly extensive video surveillance of every moment of inmates' lives.
• Elimination of delayed punishment -- On its own, prior to this incident, awakening inmates through administration of electric shock was not a violation of procedure? Children were routinely hooked up to shock equipment even while they tried to sleep, apparently.
  

Supporters of JRC and its aversive therapy say it effectively changes behavior. Of course it does. Extended torture with no end in sight tends to do that. One of the axioms of torture is that anyone can be broken, given time and cruel enough methods. There are some inmates of JRC receiving electric shock that have been there for decades.

This post is part of a Blogging Against Aversives event. You can find links to writing from other bloggers on the topic here. Or check out Amanda Baggs' extensive and well-indexed writing on aversives, behavior modification, JRC, and other related topics at Ballastexistenz. This post of Amanda's is especially informative. Feel free to add links of other writings on this in comments.

Cross-posted at Alas, A Blog

New Disability Blog Carnival at [with]tv

The latest Disability Blog Carnival is up at [with]tv where Connie Kuusisto (also blogging at Planet of the Blind) has compiled a collection of links on "Disability in the Media." Check it out! 

Cross-posted at Alas, A Blog

Technical Difficulties

So, my computer didn't make it to 2008. I'm hoping to be back online by week's end, posting, responding to comments and answering email.

See you then.

Nike ad features Paralympian

It hurts me a little bit to post this ad for discussion. I participated in protests at my university when the sports department contracted with Nike. I overcame my significant fear of public speaking to join with a local union and represent NOW to the Board of Regents. That was a decade ago and Nike still sucks.

But they do have this commercial (also embedded below) airing this weekend that will feature Paralympian basketball player Matt Scott. The news about the ad:

Nike's New Year television commercial will feature University of Wisconsin-Whitewater wheelchair basketball player Matt Scott.

Scott, a senior from Detroit, Mich., and a member of the U.S. Paralympic Basketball team, will appear in Nike's "No Excuses" commercial. The spot is the latest in the company's series of "Just Do It" ads.

Throughout the commercial, Scott bounces a basketball and takes shots at the hoop, while reciting a long list of excuses people use to avoid working out and staying in shape. The spot ends with Scott in his wheelchair, slamming down two basketballs simultaneously and saying the final excuse, "And my feet hurt." He then wheels out of the gymnasium.

The commercial will air on New Year's Eve on ESPN and MTV and on New Year's Day on FOX, ESPN, the NFL Network, BET, the Comedy Channel, FUSE, ABC Family and others.
"Overcoming a disability and striving for athletic excellence is certainly not for the weak," Scott said. "I am proud I was chosen to represent disabled athletes and show that we do not make excuses."

The brief description of the ad above is not bad. Scott is a large attractive black man wearing a black Nike shirt and a black knit cap. The ad is a full minute long and while he offers all the common and ridiculous excuses people give for not exercising, he bounces a basketball out of camera view. The camera moves and the shot is repeatedly edited so that his wheelchair does not show until the final image of him turning and wheeling from the gym.

Katie Jones and Deus ex machina

The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie's story and the larger issues. Comments everywhere have been... illuminating.

I haven't written about this before now because these sorts of articles from the mainstream media -- this one involving children, parental control of a child's well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, "special needs" schooling, and "right-to-die" versus the right to not be coerced to die -- contain so much information that is either misleading, incomplete or biased that I can't think where to begin.

Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.

Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I'm not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn't discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article's end:

Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie [Katie's four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.

Besides, anything that beeps isn't allowed in the Jones house.

"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.

The group hug part is completely untrue. I've had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It's actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.

And the "no beeping rule"? There's the real reason for the DNR right there. Better dead than using a machine that might make some noise.

I understand machines are scary. I get that because I've needed to make my own adjustments to them and also because I see it in peoples' eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I'll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.

I'd like to hear much much more about the Jones' "no beeping rule." Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie's parents don't feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die "peacefully" from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?

It's not really the beeping, of course. And the answer to Trinity's question:

Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?

seems to be that it didn't seem relevant to the point of the article. Katie's consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.

Further discussion can also be found at Wrong Planet, an online forum for people with Asperger's Syndrome.

Cross-posted at Alas, A Blog

Friday Music: Sinéad O'Connor

This is what Sinéad O'Connor actually said this past September, according to a Minneapolis Star Tribune article:

"I'd been suffering from depression for some years, which I don't think is a surprise for anyone to learn," she said. "When my third child was 5 months old, it got more severe. It's all under control, and I'm on the drugs.

"My life is much better. I've settled down a lot more. I have a lovely boyfriend, and I'm happy with my kids. It's a much more normal, kind of quiet life."

And yet, this is how that very article begins:

This may be hard to believe, but Sinéad O'Connor says she is trying to live a normal life.

That's the same O'Connor who tore up the pope's photo on "Saturday Night Live," bore four children with four different fathers, declared her lesbianism and then denied it, was ordained a priest, made a record of reggae tunes and now one of songs about God.

To prove she's trying to be normal, the Irish pop star promises to sing some oldies, including her classic, "Nothing Compares 2 U," when she performs Monday at the Pantages Theatre.

There's a lot that could be unpacked there -- normalcy versus political protest of Catholicism, normalcy versus motherhood via serial monogamy, normalcy versus sexual exploration, normalcy versus religious exploration and normalcy versus musical exploration. Admittedly, O'Connor's turbulent past has played out publicly to the curiosity of many. And, yes, she discussed finally being diagnosed as bipolar on Oprah this past fall, but I've always thought of O'Connor and her passionate music and politics as intrinsic parts of her character rather than symptoms of being abnormal. You know, part of what makes her voice so original and her music so captivating.

Other good linkage:

Recent SFGate interview about bipolarism, depression, religion and O'Connor's newest album Theocracy

Blog commentary at The Neurocritic

Here's YouTube video of one of my early favorites from The Lion and The Cobra. "Troy" performed live at the 1988 Pinkpop Festival, just her and her acoustic guitar before an audience of thousands. The song seems to be about a lover, and refers to both the legend of the ancient Greek city of Troy and W.B. Yeats' poem "No Second Troy."

Lyrics:

I'll remember it
And Dublin in a rainstorm
And sitting in the long grass in summer
Keeping warm
I'll remember it
Every restless night
We were so young then
We thought that everything
We could possibly do were the right
Then we moved
Stolen from our very eyes
And I wondered where you went to
Tell me when did the light die
You will rise
You'll return
The phoenix from the flame
You will learn
You will rise
You'll return
Being what you are
There is no other Troy
For you to burn

And I never meant to hurt you
I swear I didn't mean
Those things I said
I never meant to do that to you
Next time I'll keep my hands to myself instead
Oh, does she love you
What do you want to do?
Does she need you like I do?
Do you love her?
Is she good for you?
Does she hold you like I do?

Do you want me?
Should I leave?
I know you're always telling me
That you love me
Just sometimes I wonder
If I should believe
Oh, I love you
God, I love you
I'd kill a dragon for you
I'll die
But I will rise
And I will return
The Phoenix from the flame
I have learned
I will rise
And you'll see me return
Being what I am
There is no other Troy
For me to burn

And you should've left the light on
You should've left the light on
Then I wouldn't have tried
And you'd never have known
And I wouldn't have pulled you tighter
No I wouldn't have pulled you close
I wouldn't have screamed
No I can't let you go
And the door wasn't closed
No I wouldn't have pulled you to me
No I wouldn't have kissed your face
You wouldn't have begged me to hold you
If we hadn't been there in the first place
Ah but I know you wanted me to be there oh oh
Every look that you threw told me so
But you should've left the light on
You should've left the light on
And the flames burned away
But you're still spitting fire
Make no difference what you say
You're still a liar
You're still a liar
You're still a lawyer