Another video ad against California’s Prop 8.

Video description: The 30-second video begins and ends with a woman holding an infant. She and several other people address the camera directly: “I don’t want my kids to grow up with discrimination, or thinking it’s okay to take away people’s rights.”

“I want our kids to know that discrimination is wrong, and that Prop 8 is wrong.”

“I want our kid to know that we don’t pass laws that treat people differently.”

“I want them to know that we vote against intolerance, because California is better than that.”

“And that we never, ever discriminate.”

“That’s why we’re voting No on Prop 8.”

“No on 8″

“No on 8.”

h/t Rachel

Hiya everyone! Remember me? I haven’t been blogging much in past months — just rather random posts at my own blog — but I’m hoping to get back to writing and participating here again. Starting with this latest, crossposted.

About a month ago ABC news’ correspondent Jake Tapper reported on John McCain’s choice to not use computers. Barack Obama’s campaign had just released an ad criticizing McCain for being out of touch in a number of ways, including his self-confessed computer “illiteracy.”

Tapper explains for us, though:

Assuredly McCain isn’t comfortable talking about this — and the McCain campaign discouraged me from writing about this — but the reason the aged Arizonan doesn’t use a computer or send e-mail is because of his war wounds.

I realize some of the nastier liberals in the blogosphere will see this as McCain once again “playing the POW card,” but it’s simply a fact: typing on a regular keyboard for any sustained period of time bothers McCain physically.

He can type, he occasionally does type, but in general, the injuries he sustained as a POW — ones that make it impossible for him to raise his arms high enough to comb his hair — mean that small tasks make his shoulders ache, so he tries to avoid any repetitive exercise.

Again, it’s not that he can’t type, he just by habit, avoids when he can, repetitive exercise involving his arms. He does if he has to, as with handshaking or autographs.

Now, I have no doubt it’s true that McCain’s injuries affect him enough that typing causes chronic pain that the man would rather avoid. And I’ve also no doubt he has minions who can and should do many of the computer-related tasks of a busy U.S. Senator and presidential candidate.

But Tapper explicitly claims McCains lack of computer use is not a choice and is because of physical impairment:

It’s certainly possible that the Obama campaign did not know this, since McCain makes it sound in interviews as if this is a matter of choice, not discomfort because of his war wounds.

So, McCain is not computer illiterate, though he did once say he was. (That’s okay. I know a few septuagenarians on a steep computer learning curve.) And he can type, he knows how and can physically do so, Tapper says. It’s just so uncomfortable that he chooses not– no, wait. It’s not a matter of choice. His discomfort means he cannot.

Except that is total crap.

Plenty of us on the intertubes manage to tap something out now and then without full use (or any use) of our fingers, hands or arms. There’s voice recognition software and even free software that allows the somewhat tedious-but-effective typing with a mouse instead of a QWERTY board. I used the latter for a while last year and didn’t even need to sell one of my many cars or houses to make it happen.

Here’s my point: October is National Disability Employment Awareness Month. One of our presidential candidates has significant physical impairments that, according to Tapper, his own campaign claims are the reason he cannot readily use a computer. Of the 56 million Americans with disabilities, about 65% of disabled adults are unemployed.

Let me say that again. 65% of disabled Americans. Conservatively, that’s 6 out of 10 disabled adults without a job. Compare that to the national rate of unemployment, currently freaking everyone out at a whopping 6.1%.

The rate of unemployed disabled Americans has remained virtually unchanged since WWII, so you might say that it’s an issue needing knowledgeable and committed public officials addressing it. And McCain either does not know that physical disability is not an excuse for not using a computer, or he does not care if he is perpetuating the stereotype that disability makes a person incapable of a basic skill needed for employment in today’s workforce.

Here’s a one-minute YouTube video, with in-screen captioning and open audio description, on the topic:

Brief description of video: Karl Rove, McCain campaign advisor, states for a FOX News interview that McCain can’t use a computer because of his war injuries. His voice and the audio description continue as a number of disabled people, with prosthetic limbs, amputated stumps, and mouth pointers type at computer keyboards. A final collage of these computer users includes an image of FDR in his wheelchair, then fades into a photo of Obama and chants of “Yes, we can!”

Overwhelmingly sad news today: Harriet McBryde Johnson has died at age 50.

Image description: The photo shows Johnson in a flowered-print navy dress looking toward the camera. She sits in her wheelchair, though the image is a close-up focusing on her and not the chair. Johnson leans forward, right elbow on knee, chin in right hand. She’s a middle-aged white woman with dark hair in a very long braid trailing over her shoulder and into her lap. She’s not quite smiling, but looking interestedly back at you.

The Post and Courier of Charleston, SC, provides a preliminary notice, with a more formal obituary expected soon (the NYT will have something too, I hear):

Harriet McBryde Johnson, a well-known Charleston disability and civil rights attorney, died Wednesday.

“She worked yesterday. It’s a shock to everybody,” said friend and attorney Susan Dunn.

She was born July 8, 1957, and had been a Charleston resident since age 10.

She told The Post and Courier that she became an attorney because her disability-rights work had taught her something about the impact of law on how people live. . . .

Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to “the charity mentality” and “pity-based tactics” of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, “I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person.”

Some of Johnson’s writings:

Unspeakable Conversations in The New York Times, February 16, 2003 — The magazine cover story featuring her debate with Peter Singer on disability and personhood.

The Disability Gulag in the NYT, November 23, 2003 — On escaping the institutionalization that threatens so many disabled people.

As New Mobility’s Person of the Year in 2004, article by disability activist Mike Ervin

The Way We Live Now: Stairway to Justice in the NYT, May 30, 2004 — On the U.S. Supreme Court ruling on Tennessee v. Lane.

Overlooked in the Shadows in the Washington Post, March 25, 2005 — Harriet on Terri Schiavo. (Same article also published at Slate and in audio at NPR)

Too Late To Die Young: Nearly True Tales From a Life, her memoir, published in 2005. Reviewed by Ragged Edge, excerpted in AARP Magazine, and included in a roundup of memoirs by disabled women at Disability World.

Accidents of Nature, her youth fiction book about a sheltered 17-year old girl with cerebral palsy who attends a summer “Crip Camp” and confronts how her physical differences and the accompanying ableism affect her interactions in the world. She and a friend also confront the ableism itself.

Speaking on video about Medical Ethics at Insights TV for the United States Holocaust Memorial Museum. The first section at the link is “Perspectives on Antisemitism,” with Harriet McBryde Johnson directly below as part of the “Medical Ethics” section. Clicking on the link by Harriet’s photo and below the headline introducing her brings a pop-up window that includes a full transcript. Here’s the direct link to that window and transcript.

Wheelchair Unbound in the NYT, April 23, 2006 — Johnson writes about speaking at the U.S. Holocaust Memorial Museum.

Alas for Tiny Tim, He Became a Christmas Cliché in the NYT, December 25, 2006

A Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon at disability activist Laura Hershey’s site Crip Commentary

13 Questions at BBC’s Ouch! on May 12, 2008

The Gimp Parade has an index label just for Johnson, and Barry has discussed her writing a number of times at Alas, A Blog.

More links posted as available.

Update: There are links to blog tributes in the comments below, as well as this more complete (and more ableist in language) obit in the Charleston Post and Courier.

Friends of Johnson have created this website dedicated to her life and memory.

Cross-posted at The Gimp Parade

Did you know that Dorothea Lange, famed Depression-era photographer, had polio and that her experience with disability informed her work?

Ms. CripChick presents the latest Disability Blog Carnival on Disability Culture and Identity: “Here They Come!”

“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”
—Dorothea Lange on disability

Over 40 bloggers weigh in on how the shared history, struggle, and culture of disability inform personal and group identity. This is an impressive collection of varied explanations on how what is viewed as a deficit by mainstream culture can be a binding force and a cause for celebration. Go and read.

Image description: The icon above, provided by CripChick, is a color image of a self-portrait by Frida Kahlo with the words “DISABILITY BLOG CARNIVAL” in bold black type across the painting. The image is a close-up of Frida in her wheelchair from the 1951 painting “Self-Portrait with Portrait of Dr. Farill” described in detail in both English and Spanish here.

Cross-posted at The Gimp Parade

The latest Disability Blog Carnival is now up at Abnormal Diversity where the theme is Abuse. I submitted a post on something that happened to me about two years ago, and there’s much more to read on the topic. Check it out.

The next Disability Blog Carnival will be on May 8 at CripChick’s. The theme will be Disability Identity and Culture. From CripChick:

Here are some topic ideas!:
• What is disability identity? If you are disabled, do you feel disability is a part of you and your experience?
• What is disability culture to you? How do you put it out there or live it every day?
• Does disability intersect with your other identities (i.e. queer person, person of color, person of faith, etc.)?
• Is pride, community, or the Disability Rights Movement important to you? Why or why not?
• How do you feel about the word disabled? Is it a political term with power to you or do you despise it?
• Do you see disability outside of a rights framework (i.e. is disability something that is more than advocacy to you?)
• If you identify with the autistic acceptance movement, the deaf community, or other groups, how do you feel about disability? Many people do not want to associate with the disability community— how do you feel about this?
• Have you felt alienated [left out] from the disability community because of racism, exclusion because of your disability, the media or other factors? How has this affected your identity as a disabled person?

And some topic ideas for allies:
• Why is disability important to your work or politics?
• How do you feel about the Disability Rights Movement and what would you say to activists who downplay this movement or even disability as an important social justice issue?
• How do you see disability intersecting with feminism, reproductive justice [movement that focuses on ALL people having ALL control of their bodies], and other movements that work to end oppression?
• What do you see in your role as an ally?

CripChick also provides a list of resources for anyone wanting to bone up on the topic before participating. Deadline for submissions is May 4. The carnival submission form is available here, or leave a comment with your submission’s link at CripChick’s, or email her with the info at consciouslycrip [at] gmail [dot] com.

Other recent Disability Blog Carnivals have been at Reimer Reason on the theme of The Hardest Part, Andrea’s Buzzing About on Breaking Out, Wheelie Catholic on Appreciating Allies, and Sunny Dreamer on Standing Outside the Fire.

Image description: The icon above, provided by CripChick for the upcoming carnival at her place is a color image of a self-portrait by Frida Kahlo with the words “DISABILITY BLOG CARNIVAL” in bold black type across the painting. The image is a close-up of Frida in her wheelchair from the 1951 painting “Self-Portrait with Portrait of Dr. Farill.” described in detail in both English and Spanish here.

Cross-posted at The Gimp Parade

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 The Gimp Parade

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 The Gimp Parade

From the AP story:

A wrongly deported U.S. citizen who was missing for months in Mexico sued the Department of Homeland Security and the Los Angeles County Sheriff’s Department on Wednesday.

Pedro Guzman, 30, who is mentally disabled, was deported last May after he was arrested and jailed on a misdemeanor trespassing charge. For nearly three months, his family searched for him in shelters, jails and morgues in Tijuana, Mexico, and the surrounding area.

During that time, he rummaged for food in garbage cans, washed himself in rivers and walked as far south as Ensenada — more than 60 miles from the U.S.-Mexico border, according to the lawsuit.

Guzman tried to return to the United States several times, but was turned away. He was found near the Calexico border crossing in August and reunited with his family.

“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 The Gimp Parade

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 The Gimp Parade

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 The Gimp Parade

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 The Gimp Parade

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. (The banner at the top of this post simply announces “Blogging Against Aversives, 1-14-2008″.) 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 The Gimp Parade

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 The Gimp Parade

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 The Gimp Parade

Ari Ne’eman, president of the Autistic Self-Advocacy Network (ASAN) that led the protest against the NYU Child Study Center’s “Ransom Notes” ad campaign, announces:

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the “Ransom Notes” ad campaign in response to widespread public pressure from the disability community. You can read that announcement here (at the NYU Child Study Center’s website). The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the “Ransom Notes” ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember: “Nothing About Us, Without Us!”

It didn’t look promising at first. This past weekend the images of the ads at the Child Study Center’s website were briefly taken down, but they were back up when the New York Times Sunday coverage of the ads quoted Koplewicz as saying the Center was determined to “stick with it and ride out the storm” and even expand the campaign to four other cities soon.

Kristina Chew, PhD., who blogs at Autism Vox and was also quoted in the NYT article, has been providing relentless commentary, coverage and linkage to dozens of blogs writing about the ads. To follow those posts chronologically go here, here, here, here, here and here.

Or check out Furious Seasons where Philip Dawdy makes some interesting connections in noting that Koplewicz co-authored a study of Paxil for the pharmaceutical company Glaxo SmithKline that apparently exaggerated benefits and downplayed adverse effects in treating adolescent depression. Koplewicz is one of dozens of co-authors of that study, but Dawdy wrote earlier this year:

“Some very smart people have taken on many of the issues around Study 329 and Paxil/Seroxat and, based upon the evidence, I’d have to say that it’s fair to assert that none of us in the patient world should trust anyone who had a hand in the study (unless they want to suddenly recant the work) on absolutely anything they say about mental illness. At a minimum, we should be wildly skeptical of any claims they make.”

Dawdy hasn’t been the only one to speculate about what corporate interests might have connections to the Ransom Notes ad campaign. Many commenters to the NYT article wondered about possible pharmaceutical backing for the ads, though I’ve seen absolutely no direct evidence of this. It seems to have been yet another case of do-gooders offering a message that didn’t take into account the experiences and feelings of those they set out to help.

In the Center’s announcement of the end of the ad campaign, Koplewicz writes:

Though we meant well, we’ve come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.

Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America’s agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term “psychiatric disorder” so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.

We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.

Cross-posted at The Gimp Parade

In “Blackface/Yellowface/*face” Wheelchair Dancer muses about identity politics, performance arts and disability culture:

Despite years of discrimination and oppression and despite a history that is as appalling as the histories of other minoritized groups, there is no performing arts context for disability face. And even though exaggeration of certain physical aspects of certain impairments, there (perhaps fortunately) has not been a systematic reworking of these localized moments into a “tradition.” Any attempt at disability face would look like a party costume. And that’s kind of the impression I get when I see non-disabled types acting disabled roles.

So, over to you. What would disability face look like? Would you be able to distinguish disability face from disability drag? What would disability drag look like (and here I really do mean *drag,* as opposed to *dress up*). Could PWD with one impairment drag another? Could you drag your own impairment? Or would it have to be non-disabled people dragging disability? When does drag become disability face?

Could there really be a set of performances of disability in which we can separate an actor dressing up as disabled in order to create, with some degree of verisimilitude, a disabled role (because you *know* there are no disabled actors who can do this kind of stuff) from someone in disability face? Would it have to be literally a “face” to be disability face?

Other posts by Wheelchair Dancer on the intersection of race and disability include this, this, this and this.

Cross-posted at The Gimp Parade

Since I posted this at The Gimp Parade last June, Boys on Wheels has been a fairly major contributer to my site’s daily visitor hit count — easily 30+ hits per day. Obviously people are fascinated enough to Google. So, what do you think?

Funny or not so much?

Direct YouTube link here.

(I can’t seem to make the video embed correctly here at Alas without it messing with the formatting of the whole page. Anyone know how to correct this?)

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. Subtitles are provided in the language each song is sung in. 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.” Three men in power wheelchairs sit on a stage with dynamic colorful lighting. Sometimes the two backup guys do some dancing with their wheelchairs. Odelberg’s costume changes to match the song, with ’80s-era Bon Jovi hair and clothes for the last song.

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

Cross-posted at The Gimp Parade

The latest Disability Blog Carnival is up at Andrea’s Buzzing About, where the theme is “A Few of Our Favorite Things.” Check it out, or look through past carnivals.

Connie Kuusisto hosts the next one at [with]tv on Thursday, January 10, with submission deadline the Monday before.

Image description: Blue text lies over a line drawing of a old-fashioned back brace that look like an elaborate, longer corset. The text reads “the Disability Blog Carnival — a bracing event.”

Cross-posted at The Gimp Parade

We have your son.We are destroying his ability for social
interaction and driving him into a life of complete isolation. It’s up to
you now…Asperger’s Syndrome

The NYU Child Study Center has a new public education campaign designed to create awareness of psychiatric disorders. Ads appearing in magazines and on NYC billboards and kiosks are mock ransom notes signed by specific psychiatric disorders: ADHD, Asperger’s Syndrome, autism, bulimia, depression and OCD. Here’s the ad for bulimia (Description: Cut and paste words from magazine text form a ransom note: “We have your daughter. We are forcing her to throw up after every meal she eats. It’s only going to get worse. –Bulimia” Below the note the ad says, “Don’t let a psychiatric disorder take your child” and gives info for the NYU Child Study Center.):

Text for the other ads reads:

We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning…Autism.

We are in possession of your son. We are making him squirm and fidget until he is a detriment to himself and those around him. Ignore this and your kid will pay…ADHD

We have taken your son. We have imprisoned him in a maze of darkness with no hope of ever getting out. Do nothing and see what happens…Depression

We have your daughter. We are making her wash her hands until they are raw, everyday. This is only the beginning…OCD

The NYU Child Study Center, celebrating its tenth year and the relaunch of its public information website AboutOurKids.org, says:

The idea behind the “Ransom Notes” is that, all too often, untreated psychiatric disorders are holding our children hostage. These disorders rob children of the ability to learn, make and keep friends and enjoy life.

“Ransom Notes” may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We understand the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

And people are joining the dialogue. The Autistic Self-Advocacy Network (ASAN) has gathered 14 other disability rights organizations and issued a joint letter (.pdf file) calling for withdrawal of the ad campaign. (There’s also a petition for anyone to sign in support of the ASAN joint letter and appeal.) In part, the letter reads:

While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.

Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them.

The letter also notes that the ad campaign supports the idea that people with these psychiatric disorders — note that autism and Asperger’s Syndrome are labeled psychiatric disorders here — may be dangerous to others around them.

Does anyone else’s mind jump to Columbine-type scenarios when they see “children” and “hostage” linked? Mine did.

h/t to Stephen Drake at Not Dead Yet

Cross-posted at The Gimp Parade

Piggybacking on Amp’s report of recent NYT statistics on prisons and prisoners in the U.S. is the news that prisoner suicides in Massachusetts state prisons are nearly triple the rate in other states. From the first part of a three-part series in The Boston Globe:

Last year alone, seven inmates killed themselves, and another’s attempt left him brain dead; four have taken their lives so far this year.

Department of Correction officials say the suicides are random and unrelated. But a Globe Spotlight Team investigation of the deaths and detailed reconstruction of how they occurred found that they were far from random.

Most of the suicides came after careless errors and dangerous decisions by correction officials and the staff at UMass Correctional Health. And the trail of violence is far wider than the number of dead would indicate, as hundreds more inmates each year have wounded themselves or attempted suicide.

In fact, such incidents are soaring.

So common has it been to find a man with a makeshift noose around his neck that some correction officers have taken to carrying their own pocket tools to cut them down. The tally of suicide attempts and self-inflicted injuries - 513 last year and more than 3,200 over the past decade - tells a story of deepening mental illness and misery behind the walls of the state’s prisons, despite repeated calls for better training of officers and safer cells for mentally troubled inmates.

The entire series is here.

h/t to Liz at The Trouble with Spikol

Cross-posted at The Gimp Parade