Autism Congressional Hearing Transcript: Opening Statement (2)

Right after Rep. Darrell Issa gave his opening statement, the Oversight Committee's ranking member, Rep. Elijah Cummings, gave a second opening statement.

Here's the video:

Transcript
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Thank you for that, Mr. Chairman, and I do thank you for holding today’s hearing. Before I get started I want to take special note, as you have already done, to our friend who is leaving, Mr. Burton. Over my seventeen years on this Committee, this has been an issue that he has constantly put forth and constantly made sure that we tried to address as best we could. Mr. Burton, I want to thank you for your vigilance and I want you to know that although you may be leaving the Congress, as the Chairman just said, we will continue the fight. And I know you will too.

Mr. Chairman, we have learned much about autism spectrum disorders over the past decade. Taxpayer-sponsored research has identified risk factors and evaluated therapies to assist with some symptoms. Physicians and parents now have a better understanding of the developmental signs and the symptoms, allowing for earlier detection, and educators have experience with new methods and approaches for assisting children with autism. 

Congress has also acted to help individuals with autism and their families in significant ways. In 2010 we passed the Affordable Care Act, which contained significant new protections. Insurers may no longer discriminate against people based on pre-existing conditions. Insurers may no longer impose lifetime caps on health care coverage. New plans must include screening for autism without additional costs to the parents. And young people diagnosed with autism spectrum disorders may remain on their parents’ health insurance plans until they are 26 years old. These are real and significant protections that will improve the lives of millions of American families. 

Even with this progress, there is still more to learn and there is still more to do. While autism affects all racial, socioeconomic and ethnic groups, some studies have shown that African-American, Hispanic and Asian children are less likely to receive an early diagnosis. These delayed diagnoses cause minority children to be further behind in development of language and motor skills. We must be vigilant in emphasizing earlier detection for all our children, as an early diagnosis can make a critical difference in the lifelong development of a child.

We must also continue to invest federal research dollars in new and evolving therapies to improve the lives of those with autism spectrum disorders. In my district we house the Kennedy Krieger Institute [link], an internationally recognized institution dedicated to improving the lives of individuals with developmental disorders. These institutions improve the quality of life, education, and continued development of those affected by autism spectrum disorders, and we must continue to support them. 

Today’s hearing is an opportunity to examine what has been done about autism spectrum disorders to date and what more needs to be done in the future. There are many experts, individuals and groups who can help us in this effort. I want to take this moment to thank all of you for being here. 

As the Chairman said, there are so many people who are interested in this issue, so many who wanted to speak, but I want to say to you what I said to Bob Wright of Autism Speaks a little earlier in the day: I thank you for caring about somebody other than your children and yourselves, because what you are doing here today is raising this issue so that other children, other than those, or other folks, other than those maybe in your own families, maybe your friends, will benefit in the future. 

In other words, you are touching the future, and you are making it possible for those who are going through the autism spectrum disorders to have a better future. And so I thank you all for what you are doing, and as I said to Bob Wright, you must stay the course. One of the things that I’ve learned from being in Congress these seventeen years is that, in order for these causes to move forward, you have to keep banging the drum, and you must keep banging it louder and louder and presenting your case so that, after it’s all over, there’s high, as my mother would say, motion, commotion, emotion, and no results. I want you to be successful in what you’re doing. Life is short, and so what we must do is try and use our energy so that we can get the best possible results. And I am so glad the Chairman said what he said, about sticking with this, addressing it, and we encourage all of you to work with us as we move forward, and with that, Mr. Chairman, I thank you.

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(end transcript)

Rep. Cummings raises some important points: he's absolutely right that there are inequities in who gets diagnosed with autism, and in who has access* to the kinds of therapies, services and educational accommodations that can make an autistic person's life so much easier. He is absolutely right that these inequities are starkest along racial, ethnic and class lines.

He's also right to point out the gains autistic people and their families made with the passage of the Affordable Care Act. 

Unlike Rep. Issa, Rep. Cummings seems to place the highest priority on identifying and providing services that improve actual, living autistic people's lives, as opposed to the more academic, theoretical research about what causes autism or what autism is at the molecular level.

I admit that I find the latter category of autism research more interesting, because I majored in biochemistry and I want to know about everything at the molecular level, but there's no question that the former category of research is more useful.

You can make the argument that scientific research shouldn't be funded solely based on its potential usefulness, or lack thereof, and I'd agree with you, but given that we're dealing with a limited amount of money that's supposed to cover pure research and applied research and actual provision of services, and that right now the bulk of the funding from both public and private sources goes to pure research, I'm okay with funneling some of that (public) money into the other two avenues. Private charities (looking at you, Autism Speaks!) would, of course, continue to be free to allocate grant funding however they see fit. 

*As this article from the Los Angeles Times makes clear, these disparities persist even when services are supposed to be paid for by the state. In 2010, the California Department of Developmental Services spent $11,723 per child on white autistic children ages 3 to 6; on services for Asian children, they spent only slightly less: $11,063 per child. Black and Hispanic children fared the worst, with the state spending only $6,593 per child (just a little over half what they gave the white families!) on the former and $7,634 per child on the latter.

This Is Not a Review of "X-Men: First Class" ...

... if you're looking for one of those, I can direct you to this one by Neil Kapit, a fellow X-fan and author of the webcomic "Ruby's World," who pretty much says what I would say if I were to review this film.

No, I'm going to focus on something much narrower about this movie: its depiction of Angel Salvadore, a relatively minor character in the comics and a supporting character in the film.

I was very surprised to see her in this movie, because 1) she's a very recent character, and wouldn't really belong in a story about the relationship between Professor X and Magneto as young men (not that that's stopped any of the previous movies, where characters from different generations of X-Men have always been thrown together willy-nilly), 2) none of the other characters*, or plotlines, she's involved with make any appearance in this movie, and 3) she's very unphotogenic. She's half-girl, half-fly, and her offensive weapon is super-acidic barf.

Here's what she looks like using that power in the comics:Gross, isn't it?

That's why I was so surprised, before seeing the movie, when I read that she'd be in it. Female characters in movies, especially in comic-book movies, action movies and other movies aimed at a teenage-boy audience, are primarily there as eye candy; when they're allowed to do cool stuff and look pretty it practically counts as a feminist victory, but the look-pretty requirement is not negotiable.

And there's no way to make disgusting green barf look pretty; hence my surprise.

It turns out I underestimated Hollywood's ability to pretty almost anything up: I can't find any video on YouTube that includes this, but when the younger mutants are all showing each other their powers and picking out their X-Men codenames, Angel demonstrates something that looks nothing at all like what's pictured above. She strikes a pose, puckers her lips and releases a smoldering fireball about the size of a Ping-Pong ball, which arcs prettily through the air and lands on the statue's head, where it begins to corrode the metal**.
She uses this power again in a battle near the end of the movie; she's flying through the air breathing fire like a dragon. Less ladylike, but still not gross.

*Except Professor X, obviously, and also Magneto. Though the extent to which Magneto was actually involved in the events of Planet X are debatable ... the character who tried to suborn the Xavier School's "special class" into a reconstituted Brotherhood of Evil Mutants and conquer the world was apparently later revealed to be Not Really Magneto At All. I haven't read the comic where that gets hashed out, though, so I am quite fuzzy on the details. I just know that the whole question of "Does Planet X Count as a 'Magneto Story' or not is very contentious --- see the comment thread on this post.

**For whatever reason, the fireball-spewing part of Angel's power demonstration is missing from all the clips I can find.

Racial and Class Aspects of Homebirth

Via Feministing, I found this thought-provoking article by Miriam Pérez (who blogs at RH Reality Check, Feministing and Radical Doula) about additional barriers to safe, midwife/doula-assisted homebirth poor women and women of color face.

Some of those barriers are:

Lack of insurance coverage

"I work in a (very) low-income Medicaid clinic in Sacramento [California], and the women all have Medicaid or Family Pact as insurance," [Certified Professional Midwife JayVon] Muhammad explains. "Medicaid doesn't cover homebirth, so even if women choose to have homebirth, they are not covered, leaving no choice at all. As a result, when women show an interest, and very few do, they don't have a choice. They are forced (due to lack of money, and insurance) to deliver in the hospital."

Documentation worries

In recent years, particularly since 9/11, obtaining passports and other citizenship documentation has become increasingly difficult. The crackdown has focused on people born to midwives at home. Immigration authorities have begun questioning the validity of documents from these midwives and holding these individuals to a much higher burden of proof. This has had a disproportionate impact on Latinos and other immigrants, requiring them to go to great lengths to obtain passports and other documentation. [Washington, D.C. doula] Claudia Booker thinks this fear of citizenship being questioned may keep low-income people from leaving the hospital to give birth.

Lack of awareness

Doulas and midwives who work in low-income communities of color see the barriers as being social in addition to financial.
...
"My clients don't know a thing about homebirth, nor do they understand why they would even consider such a thing," explains Muhammad. "They are not educated about the benefits of birthing out of the hospital or birthing without interventions."

Experience of homebirth as something done because there was no other choice

Claudia Booker ... explains that women in low-income communities of color stopped giving birth outside of hospitals at least three generations ago. There is also a sense, she noted, that giving birth at home is "what poor people do and [that homebirth] was something we did because we had no option." This history reflects a larger transition among US women giving birth at home to hospital birth, which happened in the 1920s. Low-income communities, and particularly African-American ones, took longer to make this transition because of poverty, racism and lack of access to hospitals.

While for well-off white women, giving birth at home might sound like a way to take control over one's own pregnancy and delivery, and secure more choices, to poor women of color it could just as easily look like a loss of those choices they have only recently gained.

As one of the commenters points out, this reflects a "two-tiered system of giving birth in America." Of course, our entire health-care system is multi-tiered, with only the top tier providing anywhere near the level of care people need.

Read the whole thing!

Intelligence Is Racialized

In my last post, I started talking about Anna Stubblefield's talk at last September's Cognitive Disability: A Challenge to Moral Philosophy conference about the entanglement of race and intellect. Today, I'd like to post a few more excepts from that talk, which I thought were hugely eye-opening about the "double dose of oppression" disabled Americans of color receive.

[B]lack students are both more likely than white students to be labeled as special-needs students and more likely, once labeled, to be relegated to special-education ghettos rather than receiving the least restrictive, inclusive education mandated by federal law. Black adults with Down syndrome and with severe mental retardation are less likely to get the healthcare and support they need to live the longest and most independent lives possible. This is the unsurprising outcome of a social system that embraces a concept of measurable intellect that was originally designed specifically to justify the segregation and exclusion of nonwhite people, along with white people who, through poverty, ethnicity or perceived defect, were deemed undesirable.

Stubblefield argues that this kind of stratification follows perfectly from the Western way of thinking about cognitive disability:

The attribution of cognitive disability through intelligence testing is not, and has never been, a means of providing people who struggle to learn and to engage in life activities with the assistance they require. ... We can assess what people need by observing what they learn easily, and in which areas they struggle, without slapping a label on them. We can provide people with the help they need without marginalizing them in our society, whether in school or in adult life. As long as we persist with the us-them move of intellect assessment, entangled as it is with the history of oppression against nonwhite people, and as long as services exist in a social context where race and social class are salient, then nonwhite people with developmental challenges are going to receive poorer-quality services than white people with developmental challenges.

Indeed, I have read elsewhere that the original intended use of the IQ test --- as developed by Alfred Binet --- was not to rank individuals or groups, but to alert teachers to particular students who might need help in particular areas. The website I just linked to has this to say about Binet's idea of intelligence, and his intentions relating to intelligence testing:

Binet was upfront about the limitations of his scale [i.e., the concept of "mental age" on which IQ is based]. He stressed the remarkable diversity of intelligence and the subsequent need to study it using qualitative as opposed to quantitative measures. Binet also stressed that intellectual development progressed at variable rates, could be impacted by the environment and was therefore not based solely on genetics, was malleable rather than fixed, and could only be used on children with comparable backgrounds (Siegler, 1992). Given Binet's stance that intelligence testing was subject to variability and was not generalizable, it is important to look at the metamorphosis that mental testing took on as it made its way to the U.S. (emphases mine)

Imagine that, a developmental psychologist acknowledging that people don't all develop at the same rate or in the same way!

Anyway, back to Stubblefield. As she says above, we don't need to categorize people or make sweeping judgments about their overall intelligence, sentience or worth as persons to identify areas in which they may need special help. One function that intelligence testing, and the creation of a seemingly neutral arbiter of value (for, in a highly technological, industrialized culture like ours, literacy, reasoning and mathematical skill are highly valued) that often serves, in many people's minds, to validate certain other hierarchies, like those of race, class or sex.

We are still using intellect assessment as a way to categorize people on the basis of race, class and gender. It seems that we believe that doing so on the basis of a supposedly neutral notion of intelligence is more politically correct than being up-front about how categorizing people along these lines advantages those who already have social power. But even if we were to, or could, separate out this web of constructions so that we were no longer in any way drawing race, class or gender distinctions, the question would remain: “Why is it important to us to classify people on the basis of intellect?” And the answer is that doing so has no justification other than the us-them move.

(The meaning of her phrase "the us-them move" is somewhat obscure to me, though I suspect it means designating a privileged group --- an in-group --- and an out-group. As the groupings get called into question, as by various social-justice movements, the in-group needs to concoct other, fallback rationales for their privileged position. Intelligence serves as a good fallback rationale because it does tend to be found more in the already-privileged classes, so it reinforces existing hierarchies*, and it seems like an unassailable criterion of worth. Philosophers since Plato have been extolling the virtues of rule by the smartest).

Here in the US, the "existing hierarchy" that intelligence testing is supposed to uphold has a lot to do with race. Stubblefield traces the history of intelligence research in the 18th, 19th and early 20th centuries in Europe and America, and finds it can be divided into two stages:

1. Use whatever means (typically skull volume or morphology) to show that the white race is intellectually superior.
2. Find the "best" method of testing intelligence, taking it as given that a good measure of intelligence will give you a certain set of results --- i.e., consistently reproducing the already-decided-upon racial hierarchy.

Since, from the beginning, "intelligence" was equated with whiteness, nonwhiteness and intellectual disability were similarly conflated.

Throughout this period of research, white intellectual superiority was taken for granted, while intellectual deficiency was equated with nonwhiteness. In 1844, for example, Robert Chambers proposed a recapitulation theory of human development, arguing, “Our brain goes through the various stages of a fish’s, a reptile’s, and a mammifer’s brain, and finally becomes human. There is more than this, for after completing the animal transformation, it passes through the characters in which it appears in the Negro, Malay, American and Mongolian nations, and finally is Caucasian.” J. Langdon Down, whose name is still invoked in the classification of Down syndrome, based his understanding of intellectual deficiency on theories like Chambers’s. Expounding upon his original 1866 publication, “Ethnic Classification of Idiots,” Down wrote, “I was struck by the remarkable resemblance of feeble-minded children to the various ethnic types of the human family.” He proceeded to discuss white feeble-minded children who, in his words, “from some deteriorating influence” had been, again in his words, “removed into another ethnic type, and therefore resembled so-called Negro, Malay, North American Indian, or Mongolian people”. What is striking here is that the initial identification of white children with Down syndrome, a cause of so-called “real cognitive impairment,” was understood in terms of racial deteriorization. It is worth keeping in mind, when I discuss ways in which black Americans with developmental challenges experience discrimination in provision of support services, that Down syndrome in black children was not of interest to J. Langdon Down. His concern was with white children who had experienced racial deteriorization. Given his definition, it was not possible for a black child to have Down syndrome, since it was not possible for a black child to racially deteriorate; there was no lower rung on the racial ladder.

Robert Chambers's original paper can be read here**.

That historical context goes a long way toward explaining the findings quoted above, of poorer outcomes for black adults with Down syndrome, mostly because they do not have access to the kind of healthcare and supports that white adults with Down syndrome have.

While Down syndrome is now diagnosed via karyotyping, rather than some white doctor's subjective evaluation of how much you resemble other members of your race, even that objective, not inherently racialized diagnostic procedure is probably a lot more routine for white mothers than for black ones. Black women fare much worse than their white counterparts in terms of access to prenatal care in this country. So, even though it is no longer definitionally impossible for a black person to have Down syndrome, there is still a fair amount of diagnostic invisibility going on. And, even when there is parity in diagnosis (as in the people with Down syndrome recruited for the study described above), disparity persists in insurance coverage, ability to pay for medical tests, treatments and nonmedical support services, access to specialty clinics, housing options, and just about every other quality-of-life indicator you care to name.

You can find video of her talk here; it's very interesting, for those whose computers can handle such a big download.

*Not only because it really does occur more in those classes, because, as Binet noted, having a nurturing, stimulating environment in which to grow up improves one's chances to reach one's full intellectual potential, but also because the tests tend to assay skills that children of the privileged classes are more likely to have practiced.
**Funny-sad tidbit, courtesy of Wikipedia: Chambers's theories about human evolution and development, which were published anonymously, were considered so scientifically sloppy that many critics were convinced their author must be a woman!