Autism in Minnesota Somali community

I'm spending the day with family, but here's something interesting, controversial and meaty to read "On Autism, Somalis Feels the Chill in Minnesota," from Age of Autism. It's controversial for a number of reasons, including that the site is sponsored by a pharmaceutical company and because there is much discussion of vaccines and their relation to autism. Read it for info on one of the largest Somali communities in the U.S.

And then go read up at Autism Vox about the "cluster" of autism reported above. Or read more in depth there about vaccines and how there is no evidence that they cause autism.

Slumgullion #48

Just a few good links. That's all you need, right?

Bush cuts outpatient Medicaid services -- You heard about this parting gift from our Commander 'n' Thief? The Wonk Room at Think Progress has the details:

After arguing that legislation to cut over-payments to private insurers would “harm beneficiaries by taking private health plan options away from them,” President Bush, on Friday, “narrowed the scope of services that can be provided to poor people under Medicaid’s outpatient hospital benefit.”

In which the Netherlands endangers reproductive freedom -- Sylvia at Problem Chylde writes about a proposed bill that wants any woman deemed unfit to parent to be forced to take contraception for two years or any children she bears will be taken away from her at birth. I followed one link backward from Sylvia to a column for the Toronto Star to a blog post at Disaboom -- isn't it nice to know someone at a major daily reads a crip site?

Where neurodiversity meets feminist theory -- Lindsay at Autist's Corner has a three part series where she assesses an article by Kristin Bumiller titled "Quirky Citizens: Autism, Gender and Reimagining Disability" in the summer issue of the women's-studies journal Signs. Interesting writing from a blogger I hadn't found until now.

I feel sad, too, though unrelenting rage is more appropriate

Many who blog about autism have written about Alex Barton, the Florida five-year-old, whose Kindergarten teacher led his classmates in voting him out of the class after she also had the students tell him, as he stood at the front of the class, what they didn't like about him. From a news report:

After each classmate was allowed to say what they didn't like about [Melissa] Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

Melissa Barton filed a complaint with Morningside's school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said. . . .

Barton said after the vote, Portillo asked Alex how he felt.

"He said, 'I feel sad,' " Barton said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said. . . .

Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special" over and over.

Barton said Alex is reliving the incident.

The other students said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

Last Crazy Horn at Odd One Out is compiling a long, impressive list of posts on this news story as well as links to some resources responding to the topic.

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

"Ransom notes" ad campaign ends

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 Alas, A Blog

The "ransom notes" campaign

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 (click on the ad below to see it larger or read text description here: 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.

and

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 Alas, A Blog

Transcript for CNN feature on autism

Last night's Anderson Cooper 360 on CNN featured a segment on autism with Ballastexistenz' Amanda Baggs (and also Estee Klar-Wolfond, who blogs at The Joy of Autism). The entire show transcript is here, with the autism piece entitled "Finding Amanda" (gack!) starting about halfway down.

There should be more of the feature on Anderson Cooper 360 this coming Friday night.

Amanda Baggs on CNN again tonight

Amanda Baggs of Ballastexistenz will apparently be on CNN's Anderson Cooper 360 again this evening. She was featured in an interview with Dr. Sanjay Gupta earlier this year when they undoubtedly learned she has much wisdom to share about autism, normalcy, communication and disability rights.

Amanda hasn't been feeling well lately, as she noted on her blog last week, and under normal circumstances would find the deluge of attention and requests for advice that her last appearance created somewhat overwhelming. As would I, frankly.

Anyway, she's prepared for the added attention as best she can, so check out the show (I'll post a transcript link tomorrow) and cheer her on, but try not to add to the comments and emails demanding her assistance.

I'll put my own note to her right here: Congratulations, Amanda. And thank you for your tireless work.

The Speed of Dark

Back in June of 2005, anticipating the 15th anniversary of the ADA, I wrote about "The Excuse of Architecture" and cited a New Mobility story of pre-ADA prejudice, discrimination and really bad customer service. One commenter compared the phenomenon of disabled people being asked to leave restaurants (because no one wants to see them eat) to the prejudice moms face when breastfeeding in public. I disliked the comparison because the prejudice against disabled people is for being who they are while the prejudice against nursing mothers was for a (reasonable and necessary) activity they want to perform.

Although I am outraged by the way mothers in our culture are hassled for breastfeeding, I was, frankly, offended that discrimination based on disabled people's existence and simple presence was compared to discrimination based on anyone's actions, regardless of what those actions might be. It seemed reductive of my personhood and that of the members of any group of people denied access to public places because of a group identity, real or perceived.

I stand by that, so far as it goes. But the novel The Speed of Dark by Elizabeth Moon has me rethinking the complex interactions between identity, behavior and prejudice.

I've been aware of the connection before, of course. I've used a wheelchair or scooter for all mobility for 24 years now, and body language is necessarily different when you move through the world sitting down. Also, I've spent the last couple years experiencing how the use of a trach and ventilator have effected how I communicate with others and how people do or do not adjust to how my communicating differs from the norm. For example, my ability to speak past my trach partly depends upon the position of the trach. I can speak better when I lean forward, and I typically need to play with the trach a little or cock my head to control air flow past my vocal cords. This ends up sacrificing a lot of conversational eye contact, but because delays in response or an uneven voice that cuts out also complicate communication I find that behaving a little strangely is most efficient. As if I could emulate "normal" anyway, right?

Anyway, my ability to consider disability and behavior as often separate issues has been a matter of relative privilege, since a wide variety of impairments directly involve behavior or are diagnosed principally based on behavioral norms. The Speed of Dark is all about behavior and whose behavior gets to be seen as normal and whose is considered abnormal, wrong, and in need of being fixed.

It's the fictional story of Lou Arrendale, a middle-age autistic man, working and living in a slightly alternate world where people his age have had developmental assistance and workplace accommodations to mainstream them into much of society. Lou is a bit of a relic because younger generations have access to infant genetic manipulation that apparently nullifies any processing and behavioral differences caused by autism.

The bulk of the story is told in Lou's voice. I'll be honest -- the very first time I picked up this book, I didn't get very far, and it may have been Lou's voice that I wasn't ready to hear. That was over a year ago. When I picked it up again recently, I was immediately immersed, couldn't put it down, and became very invested in Lou's particular world view. Author Elizabeth Moon, who has an autistic son, won the 2004 Nebula Award for The Speed of Dark. It was also a finalist for the Arthur C. Clarke Award despite the fact that this isn't a science fiction story.

There's plenty of plot to the novel: Lou's boss pushes him and other autistic employees to take an experimental cure, Lou has a stalker hostile to him (and disability in general), and Lou also has a love interest. But it is the first-person character study of Lou, his analytical, philosophical nature, and his quest to be accepted for who he is that captivates. Despite portraying an experience she doesn't live herself, Moon has done her homework on autism. In an essay on the topic she writes:

What is it like to be an autistic individual? Only autistic individuals know for sure. Interviews with autistic people, their essays and books, all suggest that the autistic experience is just as varied as the non-autistic experience. Some people are happy. Some people are not happy. Some people have close friends. Some do not. The similarities imposed by the condition do not impose an emotional tone or even a core personality in the Myers/Briggs sense....

One of the things which impressed me about our son, even before he could communicate in signs, gestures, or words, was the healthy quality of his emotional life. Yes, he screamed when he was upset, and I would have preferred a "Mom, I don't want to do that." But the things he enjoyed were reasonable, healthy things to enjoy: food that tasted good, music he liked, running around on the grass on a spring day. There was nothing weird about what he liked. His dislikes were harder to understand, but made sense once I realized that his sensory input was different than mine, and his responses were stronger. He felt hot when I barely felt warm. Tags in clothes (that I find only mildly irritating) bothered him a lot. He liked some colors more than others. Certain textures and flavors in food bothered him more. He liked some people and didn't warm up to others. These are perfectly normal responses in a small child--just on a different scale. His likes and dislikes tended to be more intense (typical of an earlier developmental stage: infants are usually very intense in their likes and dislikes.)

Through the plot, Moon tackles two of the thorniest questions regarding disability: What is "normal" and what's the value of a "cure"? Lou thoughtfully explores both ideas:

All my life I've been told how lucky I was to be born when I was—lucky to benefit from the improvements intervention, lucky to be born in the right country, with parents who had the education and resources to be sure I got that good early intervention. Even lucky to be born too soon for definitive treatment, because—my parents said—having to struggle gave me the chance to demonstrate strength of character.

What would they have said if this treatment had been available for me when I was a child? Would they have wanted me to be strong or be normal? Would accepting treatment mean I had no strength of character? Or would I find other struggles?

The construction of the novel and the metaphors used work with Lou's voice to help a non-autistic person relate to what Lou thinks and feels, what confuses and alarms him. The uncertainty of the cure Lou's boss is trying to coerce his employees to take and the information imbalance about the treatment which the boss exploits work together as a metaphor for the confusion Lou has in understanding how to navigate society and most social interaction. We can all relate to not knowing how to make a complicated decision, and in the novel's context we understand and relate to the confusion Lou faces because of his autism. That's assuming that the portrayal of Lou rings true for people with autism, of course.

Lou's hobby is fencing, and the detailed portrayal of his study and practice to improve his fencing skills works as a convincing metaphor for how treacherous and complex navigating workplace politics or nurturing a romance can be. Strategy and understanding the "opponent" are key. Fencing becomes a tool for seeing Lou's personal genius and charm as well as glimpsing what the life perspective of an autistic person might be.

Big spoiler follows. Act accordingly: The last 30 pages of the plot didn't resolve as I might have hoped, but from a literary perspective -- and a philosophical one -- Moon makes the story as compelling and thought-provoking as possible. Shorter version: I hate that Lou took the cure. I understand that his decision opens the debate up more than his deciding to accept himself as he is. On a personal level, I even relate well to the idea of using "the cure" to try something different and challenge yourself so completely. When I play with the philosophical question of a cure for my own impairments, it is not becoming normal or even being healthier that is compelling to me. It's enticing to consider taking the option that does not currently exist and challenges everything I know and am.

But I hate hate hate that "normal" wins. And I look forward to hearing what others thought of the book and topics it presents.


Other links about the novel:
2003 review in January magazine
2003 review at infinity plus
2005 review in Blog Critics Magazine

Double discrimination for ethnic minority children with autism

Source: BBC News

Excerpt:

A National Autistic Society report on "the reality for families" suggests 62% of parents had no choice over the school their children would attend.

Children with autism who are from ethnic minorities face a double discrimination in education, campaigners say.

Parents were much less satisfied with their child's academic and social progress than White British parents.

The government said meeting the needs of autistic children was "a priority".

Parental perceptions are that their children lost out because of the sort of unwitting racism identified in a recent Department for Education and Skills report.

Joan Nelson, whose son is black and has autism, told the society she believed ethnicity had a significant impact on the level and type of education he was given.

"There appeared to be more of a belief that my child was bad as opposed to having special needs," she said.

Black boys were penalised because their special needs meant they had difficulty accessing appropriate education, because they were Black, and because they were boys, she said.

"This hinders them in achieving what they should in today's system."

"Autism Speaks" creator on Oprah

Kristina Chew at Autism Vox reports that Oprah will feature "The Faces of Autism" on April 5 (tomorrow), except those faces will be filtered through the lens of guest Suzanne Wright, co-founder of Autism Speaks. For those unfamiliar, Wright's organization is responsible for the video "Autism Every Day," which will also be featured on The Oprah Winfrey Show. The video was released in May 2006 and features a mother saying in the presence of her autistic child that she thinks about killing that child.

You can read about the reactions of autistic folks to this video here, here, and here.

Oh, Oprah.

Autistic boy assaulted by waitress

Here's the story as told by the child's father:

We had to wait about 15 min. to order, and the waitress seemed stressed. It was David's turn to order... he was slow to make up his mind while ordering, and grumpy. Not yelling or anything himself, just cranky and repetitive (about not wanting ranchero sauce on his omelet, said 4-5 times). The waitress took this somewhat uncouth behavior as directed at her, and she suddenly snapped. She grabbed his shoulder, shook him, and leaned over and started mocking him, yelling his words back directly in his ear. He asked her to stop, and she grabbed his shoulder and then started screaming in his ear. Screaming that she had had enough and didn't have to work with this. And then she let go, stood up, told the table that she would not serve anyone at the table, and stalked away. He hadn't touched her beforehand... he wasn't even making eye contact, he had been looking at the menu.

We all looked at each other, in shock. After a pause, I got up and went to the manager, behind the register. I politely explained that I had an autistic son, that sometimes he needed a bit of extra time or patence, and did not read body language well. And that his waitress had abused him and refused to serve our table, and that that was unacceptable. I wanted an apology and a different server. But the manager backed up the waitress. He said that she was right, and that if my son was "going to be too much trouble" then we should not let him order for himself in restaurants. That it was our fault for having a child that needed patience or hesitated while ordering, and so we should have ordered for him. And that our party should leave.

Link via Ballastexistenz

On CNN's Anderson Cooper show tonight: Amanda Baggs of Ballastexistenz

Dr. Sanjay Gupta, a medical corresondent at CNN will interview Amanda Baggs on the Anderson Cooper show tonight, 10 P.M. Eastern time. From Gupta's blog:

She taught me a lot over the day that I spent with her. She told me that looking into someone's eyes felt threatening, which is why she looked at me through the corner of her eye. Amanda also told me that, like many people with autism, she wanted to interact with the entire world around her. While she could read Homer, she also wanted to rub the papers across her face and smell the ink. Is she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.

It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn't communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn't help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Updated: The transcript of the show is here, though it's the complete show and you need to scroll down a bit to get to the section with Amanda. Anchor Kiran Chetry also says there will be "much more with Amanda and Sanjay tomorrow. Plus, you can also read a blog by Amanda and watch her video by logging on to CNN.com/360blog. While you're there, you can actually ask Amanda questions about autism."

Attention

Go tell Amanda of Ballastexistenz that she rocks. Her site is a Yahoo pick of the week!

Various NPR disability stories

Label falls short for those with mental retardation by Joseph Shapiro. Excerpt:

The term mental retardation was supposed to be an improvement. But the fight over language keeps going on. That becomes clear if you ask those with mental retardation what they think about that description.

"I hate that word — mental retardation," says Thelma Greene of Washington, D.C. "I wish they would change that one, because it sounds so institutional, like you can't do nothing for yourself and you're depending on somebody else to do everything, from putting on all your clothes down to your shoes. And that's not right."

"Retardation is not the good word," Anthony Vessels, also of Washington, says in agreement.

"I never did like that word 'retardation' or 'mental retardation,' adds Victor Robinson. "Because everyone has called people names about that. And no, none of my friends did like that name or any other name, being called 'stupid, dumb.' And it hurts a person very much."

"Poster Child" Emily Rapp about her life and her book, Poster Child: A Memoir

A look at an autistic savant's brilliant mind from Talk of the Nation, about Daniel Tammet's memoir Born on a Blue Day.

Death of 14-year-old only tip of the iceberg of abuse

From the Atlanta Journal-Constitution, "A Hidden Shame: Death and Danger in Georgia's Mental Hospitals":

Alone in the darkness of a state mental hospital, Sarah Crider, 14, lay slowly dying.

She complained of stomach pain at 4:30 p.m. She vomited about 8:30. When the only physician on call at Georgia Regional Hospital/Atlanta came at 9:20, Sarah had vomited again, but the doctor did not examine her, medical records suggest. She threw up around midnight and once more about 2 a.m., this time a bloody substance that resembled coffee grounds. But hospital workers did not enter Sarah's room again until 6:15 a.m. By then, it was too late.

A few hours later, two hospital employees drove to Cobb County to tell Joyce Dobson, Sarah's grandmother. Dobson adored Sarah for all her complexities: artistic but troubled, challenging but comic. Now she could think only of two nights earlier, when she had last visited Sarah and heard another patient's haunting scream.

I hope nobody killed her, Dobson blurted out.

In fact, what happened to Sarah was beyond anything Dobson could have imagined.

Read the rest.

Books for the new year

Happy New Year everyone!

Like every book lover I know, I've got a towering (and growing) pile of books waiting to be read. I thought I'd share a brief list of some books from that pile that I plan to read in 2007. All of these are disability-related and currently wedged between my full bookshelf and dresser. If you've already read them, are interested in discussing them, or happen to be the author, this is your heads-up to what I hope will be interesting future discussions here on wherever these books take us.

The Speed of Dark by Elizabeth Moon -- Moon won the Nebula Award in 2003 for this novel told from the perspective of a young autistic man. Normally a writer of military sci-fi, this story apparently differs from the author's usual genre and was prompted because she has a child with autism.

Geek Love by Katherine Dunn -- This will be a reread for me, but I haven't been back to it since I first found it at the fabulous feminist bookstore Women and Children First in Chicago when it was originally published in 1983. An amazing novel about carnival freaks and disability told in first-person by Olympia Binewski, a bald, humpbacked albino dwarf.

Crip Theory: Cultural Signs of Queerness and Disability by Robert McRuer -- From the Amazon description: "McRuer examines how dominant and marginal bodily and sexual identities are composed, and considers the vibrant ways that disability and queerness unsettle and re-write those identities in order to insist that another world is possible."

Planet of the Blind by Stephen Kuusisto -- Fellow disability blogger Stephen's first memoir.

My Body Politic by Simi Linton -- Author of the excellent Claiming Disability: Knowledge and Identity tells her personal story.

Blackbird Fly Away by Hugh Gallagher -- A personal memoir.

By Trust Betrayed: Patients, Physicians, and the License to Kill in the Third Reich by Hugh Gallagher -- A definitive book detailing the eugenics movement against disabled people in Nazi Germany. Gallagher also wrote FDR's Splendid Deception.

Wicked by Gregory Maguire -- I read this while in the hospital and unable to blog about it. An alternative telling of The Wizard of Oz from the Wicked Witch Elphaba's point-of-view. Disability and physical difference everywhere.

I also hope to read Jen Burke's A Life Less Convenient and Stephen's newest book, Eavesdropping, but I haven't bought them yet.

Saturday Slumgullion #20

Three Guardian articles from the last two weeks -- 1) Identity crisis: Is the disability movement headed in the wrong direction? 2) Disabling the past: A look at the Middle Ages 3) The closed ward: The illogical world inside a psychiatric ward

The New York Times article, "Wanting babies like themselves, some parents choose genetic defects," looks at preimplantation genetic diagnoses that is used to favor embryos with specific disabilities. While the article itself isn't exactly even-handed or disability-positive, the comments following it are simply hostile toward disability -- genetic defectives, in the article.

New York's North Country Public Radio has a "People First" Readers and Writers on the Air series, a more literary continuation of their award-winning "Disability Matters" series from last year that included interviews and documentaries about the lives of disabled folk. Check out the audio archives with Stephen Kuusisto and Reynolds Price. Upcoming programs feature Nancy Mairs, Temple Grandin and Michael Berube.

The Hamilton Spectator article "Poisoned Lives" reports on the radioactive land Navajo's on a Utah reservation call home:

In every corner of the reservation, sandy mill tailings and chunks of ore, squared off nicely by blasting, were left unattended at old mines and mills, free for the taking. They were fashioned into bread ovens, cisterns, foundations, fireplaces, floors and walls.

Navajo families occupied radioactive dwellings for decades, unaware of the risks.

Over the years, federal and tribal officials stumbled across at least 70 such homes, records show. The total number is unknown because authorities made no serious effort to learn the full extent of the problem or to warn all those potentially affected.

The November issue of Perspectives Online, the online journal for the American Historical Association, includes a forum on disability history.

Stuart Hughes, BBC producer and blogger at Beyond Northern Iraq, who lost a leg while covering the war in Iraq is the subject of the BBC News article "Bionic man."

Autism Diva on the recent Newsweek cover story on autism.

Carnival round-up:

Deadline for the next Disability Carnival is Monday, December 11. The carnival will be up at Planet of the Blind on Thursday, December 14.

The latest Carnival of Feminists is up at Diary of a Freak Magnet.

Grand Rounds

Change of Shift

What we really look like

I've been thinking a lot lately about what people with disabilities look like and how it influences our interaction with the nondisabled in public. What disabled people are supposed to look like is part of the interaction too. I've seen several films recently where appearance was definitely part of the tension of personal encounters, and I spent yesterday (101° in Minnesota, yo!) out and about in Minneapolis paying attention to possible changes in how nondisabled strangers treat me. When I thought of it. Mostly I just had fun.

I had my quarterly appointment to get my PEG tube changed for a newer shinier one. I say that like I've been doing this for years, but I've only had a feeding tube since November when I nearly died of malnutrition, my stomach refused to do any more digesting, I got aspiration pneumonia from constant vomiting and took a helicopter ride. Then I woke up with my new friend, PEGgy. This particular incident began with a delicious Chipotle's burrito and I now mourn the fact that the thought of eating another someday only makes me think of hurling.

Anyway. The tube gets replaced every three months. (Incidentally, Dr. Perky had told me they never need replacing when I had expressly told her mine was starting to feel floppy and asked if she would check on when the switch might need to occur.) So every few months now I will migrate into The Cities to the hospital where my stoma was born for this amazing procedure. And it is amazing -- I watch on an x-ray monitor, completely unsedated, while someone pokes a guidewire down the tube, deflates the balloon in my stomach, pulls out the old tube and threads in the new one like he's snaking a drain. It takes less than five minutes and it's totally cool to watch. But I digress.

Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one's own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact. The only spontaneous smile I received from someone I didn't need to interact with was from a young Somali woman selling beautiful silk clothing at the newish Midtown Global Market, also known as the most fabulous food court in the entire state, by the way. Jamaican jerk chicken. Mmmmm. Again, I digress.

(Oh, wait. Can anyone familiar with Pocky and the astounding variety of flavors it comes in tell me what's up with the "Men's Pocky"? Is that man-flavored or candy viagra, or what?)

Okay, so I know it's fear of difference and the old "there-but-for-the-grace-of" thing. And that's fed by a history of segregation and institutionalization. I'm 37, by the way, and Americans in wheelchairs who are my age are pretty much the first generation allowed to attend public school with everyone else. Hollywood hiring beautiful nondisabled actors to portray us on film doesn't help fearful people get used to being around actual gimpy bodies either.

Which brings me to these photos of the New York celebration of the ADA's anniversary last week. Real people. And some hot transportation I covet. Great photos from Aleja at No Pity.