Sunday, May 31, 2009
Dr. George Tiller, a Wichita-based gynecologist who ran one of only two clinics in the state of Kansas that perform abortions, was shot outside Reformation Lutheran Church this morning.
The police have a suspect, Scott Roeder from Merriam, Kansas. (Merriam is a suburb of Kansas City, Kansas, neighboring the one in which I live).
Dr. Tiller has been shot at before: in 1993, the anti-abortion activist Shelley Shannon shot him twice, but he survived. His clinic is frequently picketed, and he's also been subjected to intense scrutiny by former Kansas attorney general Phill Kline, who seized the medical records of Tiller's patients to look for evidence of sexual abuse of underage girls --- this was seen by many people, including me, as a pretext to harrass Tiller and possibly close down his clinic, since an abortion clinic is hardly the only place one would look for underage rape victims, yet it seems to be the only context in which he mentioned this personal quest.
If I have anything substantive to say about this good, brave man's murder, it is this: There is no difference between the people who did this (and who bomb abortion clinics and stalk, harrass and murder doctors nation- and worldwide) and the Islamic terrorists who are supposed to be The Enemy.
Here's Jimi Hendrix doing Bob Dylan's "All Along the Watchtower":
And here's Save Ferris doing "Come on Eileen" by Dexy's Midnight Runners:
I think both of these pretty much blow the originals out of the water.
(Some runners-up: Evanescence's cover of Nirvana's "Heart-Shaped Box," Fear Factory's version of Gary Numan's "Cars" ... and I had a third runner-up but can't come up with it now. Whatever).
I'm not going to tag anybody; just, as always, whoever feels like doing this, knock yourselves out.
Friday, May 8, 2009
I'd liked the above picture until that day, the day my teacher yelled and my parents got called and I got lectured for academic and "behavior issue" stuff in addition to for my abysmal self-care skills. After that day, though, I hated it. I suddenly, having been jerked and jolted into raw self-awareness via humiliation, saw that picture and saw not a kid actually having fun looking at stuff on an interesting field trip, but a kid with giant ugly glasses and hair hanging down in dirty, matted sections. It was preposterous that that could be me. And yet it was. And I had no way to explain why or how I was "like that," or why I hadn't noticed so much [was] wrong, or why I couldn't seem to keep up with most of what people my age were "supposed" to be keeping up with.--- and Shiva describes what he sees as clear, even obvious, signs of autism in his old photos.
I didn't see anything in them, myself --- if I hadn't known it was him, I'd have no reason to suspect the boy in the pictures of being autistic; to me, he seems too engaged with the photographer (and with his younger brother, who is also pictured) to trip my mental autism alarm.
His post did inspire me to post a bunch of old photos of my own, however.
This is me, maybe three or four years old. I have a crayon in my hand; I've always loved to draw. (The crayon is Burnt Orange, which I've always thought was brown, not orange. I frequently quibble with other people's designation of ambiguous colors; my mom and I often cannot tell which of my items of clothing we're talking about, because we assign the same object to different color categories --- an indigo or blue-violet shirt will get called "blue" by my mom and "purple" by me, for example).
That "frozen" posture is typical for me, even now: if interrupted in the middle of something, I will often remain in whatever posture I was in when distracted. I also frequently bend my elbows and extend my fingers like that whenever I'm deep in thought.
Also typical of me, in early childhood, is the stare.
Here it is again:
Because I perceive the things around me in such extensive, vibrant detail, I could quite probably sit and look at any given object forever. This gives me a particularly intense gaze, which in elementary school I learned under no circumstances to direct at another person, as it is rude and intimidating. (The result of that particular bit of behavioral engineering is that I now display the typically "autistic" lack of eye contact).
And here I am frozen in place again, this time at age fifteen, standing on top of a (short) mountain:
And there's that hand, hovering at waist height, fingers curling and flexing.
You can also tell I've started choosing my own clothes: note the emphasis on black, the colorful socks and (though I'm not sure how visible they are in this picture) the black sneakers tied with rainbow shoelaces.
Another typical posture for me is this one:
That's me in sixth grade, age eleven. The astronaut is in the background because I went to Christa McAuliffe Elementary School for a year and a half --- astronauts, space and "Reach for the Stars" were big themes there. My arms are tightly crossed over my stomach, and I am leaning slightly back, against the wall and away from the photographer. I stand like this often; it's a defensive posture.
(My posture in this picture is also pretty near identical to AnneC's in the picture she posted).
So, what makes a person appear "autistic"? I indicated in a comment on Shiva's post that I looked primarily at eye gaze: is the person looking at the camera? Do they appear conscious of the photographer, or of other people in the picture? To me, an obviously autistic person does not; they're staring off into the distance or focusing on a nearby object. Accordingly, the first picture I posted, with me holding the crayon, is the one I think of as the most autistic-looking of these.
I am indebted to Donna Williams's captioning of her own old photos in Nobody Nowhere for these ideas; that book was the first place I'd ever seen anybody look at photos with an eye to autism-spotting, and I don't know that I'd encountered it anyplace else before I saw Shiva's and Anne's posts.
Anyway, in that book Williams includes a series of pictures of herself growing up, with captions describing what she sees in each one. She describes herself, variously, as "star[ing] obliviously through the camera," "preoccup[ied] with a tactile, nonsocial world," and "clearly not able to be a part of things," in contrast to her older brother, who appears in many of the photos beside her, and whom she describes always as "relating directly to the person taking the photo" and, later, developing a "distance from, and lack of interest in" her as it became clear to him that she wasn't going to be a regular kid like him.
Eye gaze is also coming into prominence as a potential early marker for autism; there are studies looking at what parts of the face autistic babies track (the mouth rather than the eyes); whether autistic babies look preferentially at faces over objects, and whether autistic babies demonstrate joint attention and gaze cuing (which it'd be hard to do if, as seems to be the case, they tend to avoid looking at people's eyes at all!).
Thursday, May 7, 2009
Here's what Amanda has to say about that:
This is a complete disaster. For reasons I can't quite understand, Jenny McCarthy is dedicated to fighting medical science on multiple fronts on the theory that she, as a celebrity who has given birth, understands way more about disease and biology than mere doctors and scientists, with their facts and their evidence.
Amanda noticed an awful lot of magical thinking about food on McCarthy's blog, but what she (rightly) focuses on is the irresponsibility of giving an anti-vaccination activist such a powerful public voice. (With her two mega-selling books, McCarthy has already given her idea that vaccines caused her son's autism way more of a public hearing than it should have).
Anti-vaccination ideas have become more and more widely accepted in America, with the result that vaccine-preventable diseases have started to reappear in some communities.
(Thank you to Bev of Asperger Square 8 for this image, and for the one at the top of the page).
While I'm pretty sure I haven't yet teased out all the different cultural and political strands making up the anti-vaccination (or anti-science in general) snarl, I do have a few starting points. I think part of it has to do with the way most human minds work.
People don't deal with randomness well. One of the things our brains do really, really well is detecting patterns, so it's not surprising that we've learned to play to this strength and see patterns everywhere. The other thing we do really well is express very specific ideas about --- as Steven Pinker says in his book The Language Instinct --- "who did what to whom". Because we've developed language, we can put events in order and indicate cause and effect. I think these built-in biases make us a lot likelier to see 1:1 cause-and-effect relationships, even where none really exist.
Another inherent bias we seem to have is what Daniel Dennett calls an "agent detector." When most people perceive motion, they evaluate whether that motion is likelier to come from a living or nonliving source. Dennett hypothesizes that, throughout much of our evolutionary history, it was advantageous for humans to be able to deduce, without needing to see the beast itself, when there might be a dangerous animal (or hostile group of humans!) in the vicinity. Accordingly, we're wired to err on the side of caution, and impute unexplained sounds, movement etc. to unseen living beings.
What does that mean for Jenny McCarthy? Well, I think it's making the impersonal, luck-of-the-draw genetic explanation for autism ring false to her --- she wants something more concrete, something she can fight against. It's probably easier for her to visualize evil little mercury atoms glomming onto her little boy's brain cells than it is to visualize his DNA simply encoding proteins that work together to build a slightly different nervous system than hers. Plus, with the evil-little-mercury-atoms option, she can conceive of her son's autism being a separate entity from her son, which she cannot do if her son simply developed differently.
It also gives her an illusion of control --- if Evan (her son) was born with different genes that led his embryonic nervous system to develop differently, there's nothing she can do to change that. If, however, she can simply rid his body of the thing she's convinced is in there, making him different --- well, she will! No power in the 'verse will stop her.
(That's another interesting fallacy of the autism-is-mercury-poisoning brigade: if they're right, the "damage" is irreversible. Mercury kills brain cells, and brain cells don't regenerate. You chelate someone who's been mercury poisoned to stop the cell-death process: you're cutting your losses, not restoring what's already gone).
Anyway, the "illusion of control" thing is very much up Oprah's alley, considering her past endorsement of The Secret, which told millions of gullible readers that all they need do is concentrate really hard on what they want from life, and "the universe" (ooh, hey, another vaguely anthropomorphic entity!) will reward them with it.
I've listed the individual psychological and cognitive factors that I think contribute to the surprising prevalence of magical thinking in a technocratic society above, and while I certainly think there's also a slew of societal, cultural and historical factors involved, I don't want to list them all here.
(NB: I don't recommend reading very many of the comments at Pandagon; while the commenters there are generally intelligent, reasonable and scientifically literate --- as opposed to commenters at most major news websites! --- they almost all share the anti-vax crowd's assumption that autism is a terrible, horrible thing that ought to be eliminated as soon as possible. And reading comment after comment to that effect can be pretty demoralizing).
Sunday, May 3, 2009
If anything, I would've thought we'd derive some measure of immunity to eating disorders --- or at least to the diet culture that fosters them --- from our social obliviousness.
According to Sharon's post, and this Greek study published in this past March's Journal of Autism and Developmental Disorders, however, that's not quite true.
The study measured the attitudes of 56 teenage girls diagnosed with Asperger syndrome, and of 56 of their age-, height- and weight-matched female classmates, toward food, eating and body image using the EAT-26 questionnaire, which is a screening tool for eating disorders:
The adolescent girls were asked to complete the Eating Attitudes Test-26 (EAT-26, Garner et al. 1982), which assesses eating attitudes and behaviors. The purpose of this questionnaire is not to provide a diagnosis of eating disorders, but it is used as a screening instrument, and people who score above 20 are advised to consult a counselor or a physician. It has been validated and used in many different countries to explore eating attitudes mainly among adolescents and young people (Lynch et al. 2007). It is divided into three subscales, namely: a) dieting, which consists of 13 items (e.g., "I am terrified about being overweight"); b) bulimia and food preoccupation, which consists of 6 items (e.g., "I have gone on eating binges where I feel I may not be able to stop"); and c) oral control, which consists of 7 items (e.g., "I feel that others pressure me to eat"). The girls rated each item on a scale from 1 = "always" to 6 = "never", which was then transformed to an inverted 4-point scale in order to obtain the final score (ranging from 0 to 78). The Cronbach alpha [link] for the entire scale in this study was .86 and it is deemed satisfactory. The mothers completed the same questionnaire answering the questions for their daughters (e.g., "My daughter is terrified about being overweight").Both the Aspie girls and their mothers reported more eating problems overall, though the mothers tended to report fewer problems than the daughters in both the AS and control groups, i.e., average total scores and average scores on each subscale were lower when the mothers filled out the questionnaire than when the girls themselves did. Also, a higher proportion of Aspie girls (26.8%, compared with just 7.1% of their peers) scored above 20, indicating serious problems. The Aspie girls also self-reported significantly more problems than their peers did, with significantly higher overall scores (16.34, compared with 12.39) and subscores in two of the three domains. The groups of girls did not differ significantly in dieting behavior.
The study's author, Efrosini Kalyva, attributes the greater incidence of disordered eating attitudes and behaviors in Aspie girls to the "rigid and repetitive behavior patterns" common in autism spectrum conditions. She raises the possibility that these eating problems might be the adolescent incarnation of the very picky eating typical of young autistic children.
Nestor L. Lopez-Duran blogged about this study when it was published online last September.
Kalyva cites this article in the Times of London in her Discussion section.
Kalyva, E. (2008). Comparison of Eating Attitudes between Adolescent Girls with and without Asperger Syndrome: Daughters’ and Mothers’ Reports Journal of Autism and Developmental Disorders, 39 (3), 480-486 DOI: 10.1007/s10803-008-0648-5
Saturday, May 2, 2009
I've never participated in one of these mass blogging days before, since I usually can't think of anything to say on the topic when they're called, but this time I've got some disablism against which to blog.
First, there's the sidelining of the Community Choice Act, as ABFH has also mentioned in her BADD post. The Community Choice Act (H.R. 1670, S. 683) would amend Title XIX of the Social Security Act to remove what ADAPT terms the "heavy institutional bias" of its coverage rules for long-term care.
The act would revise Section 1902(a)(10)(D) of the Social Security Act (which currently just says that a state plan for medical assistance --- like, say, Medicaid --- should "provide for the inclusion of home health services for any individual who, under the State plan, is entitled to nursing facility services") to include "community-based attendant services and supports" as another alternative (besides the in-home care already specified) to institutionalization. It would also add a section detailing the regulation and oversight of such programs. (One of the features of that proposed section that intrigues me the most is its call for each state to create a Development and Implementation Council --- made up primarily of elderly and disabled people themselves --- to make sure the program works as it should).
Since one of the Obama administration's biggest priorities has been health-care reform, and since strengthening Medicaid had already been part of that agenda, you'd think the Community Choice Act would be part of that. Yet when a delegation of ten ADAPT activists met with a group of officials including Nancy-Ann De Parle, Director of the White House Office of Health Reform; Jeff Crowley, Director of the Office of National AIDS Policy and disability-policy advisor; Henry Claypool, Director of the Office of Disability in Health and Human Services; and Mike Hash, coordinator of joint White House-Department of Health and Human Services reform efforts, the activists were told that the Community Choice Act was not a priority for the current wave of reforms.From the ADAPT Action Report of April 27th:
The administration stated that its only commitment currently is to extend insurance to the people who are uninsured, and that the people in nursing homes and institutions would need to continue to wait until an unspecified time in the future when it is proven that the health care reform worked.
Hearing that, 500 ADAPT members gathered outside the White House, chanting and holding signs and banners. Some handcuffed themselves to the fence, and all were there in defiance of a police order not to protest on the sidewalk or near the fence.91 protesters were arrested.
On the following day, the protest was moved to Capitol Hill, where activists blocked off Independence and Constitution Avenues and crawled up the Capitol steps.
99 were arrested on that day.
On the 29th, ADAPT and SEIU held a joint rally in Upper Senate Park, at which Community Choice Act sponsor Sen. Tom Harkin spoke.
(All photos by Tom Olin, available online here)
I also have an example of disablism at the local level, in the publicity campaign for a bill that's been kicking around the Kansas legislature for a few months now.
Dubbed "Kate's Law" after Olathe veterinarian and Kansas Coalition for Autism Legislation founder Michael Wasmer's young daughter, the Accessing Autism Services Bill (H. B. 2367, S. B. 12) would require health-insurance policies to cover autism treatments, particularly ABA, which had previously been denied coverage under a lot of plans due to its "experimental" status. Currently, the House version of the bill is pretty much dead in the water, having failed to win enough votes to be pulled out of committee and into general debate. The Senate version was tabled late in January; Senate Financial Institutions and Insurance Committee chairwoman Ruth Teichman cited the bad economy and a lack of information about the potential economic effects of expanding insurance coverage.
I have no problem with the law itself, and, indeed, think that whatever services people decide they need should be accessible to them. No, my gripe is with the oft-raised specter of Dire Consequences if any autistic child grows up without having had extensive behavioral therapy.
Here's an example of such scaremongering, from an April 28 Kansas City Star article:
Autism is a developmental disability that affects 1 in 150 children, typically by age 3. Autistic children have problems making eye contact. Language skills are stunted. Interpersonal relationships become difficult. Left untreated, autism can affect a person's educational and employment opportunities.
There's no cure, but early intervention can teach autistic children the skills they need to lead productive lives.
Without therapy, many severely autistic people end up in institutions or relying on the government for help. The Autism Society of America, however, estimates that two-thirds of the cost of lifelong care for an autistic person can be eliminated through early therapy.
This is disablist rhetoric for a couple of reasons. The first reason should be fairly obvious: the article is saying that, without "treatment" of a certain type and duration, an autistic person's life will not be "productive." (In an aggressively capitalist, bottom-line-obsessed society like ours, such a prediction carries the additional connotation of moral worthlessness). The person is doomed to grow up a "useless eater," costing his family, state and country money.
Besides assuming the worst possible outcome, this line of argument also objectifies the autistic person. Nowhere are hir thoughts, feelings or desires mentioned, and hir (squandered) potential is alluded to only in bare economic terms. Hir life is discussed entirely in terms of its financial impact on the state. The moral imperative presented in this argument therefore has nothing to do with the autistic person hirself, but instead deals with minimizing the economic damage this person does simply by existing as ze is.
Finally, there's the disablism inherent in a political and economic system in which advocacy groups feel like they have to prophesy doom to get assistance from the government. Instead of saying, "Hey, some families want this, can we help them get it?" advocacy groups like Autism Speaks and the Kansas Coalition for Autism Legislation feel they have to say, "Without this, one in every
166 150 100 children in preschool now will grow up to be a DROOLING VEGETABLE and bankrupt their family! The economy will collapse, and there'll be RIOTING IN THE STREETS!! FUND THIS NOW!!!!"