Saturday, November 29, 2008

In Which Margaret Atwood Speaks For Me

This is a short piece from Margaret Atwood's 2006 collection of essays, short stories and poems called The Tent. It's not a poem, but it's too short to be an essay.

Whatever it is, I'm reproducing it here:


Walking was not fast enough, so we ran. Running was not fast enough, so we galloped. Galloping was not fast enough, so we sailed. Sailing was not fast enough, so we rolled merrily along on long metal tracks. Long metal tracks were not fast enough, so we drove. Driving was not fast enough, so we flew.

Flying isn't fast enough, not fast enough for us. We want to get there faster. Get where? Wherever we are not. But a human soul can only go as fast as a man can walk, they used to say. In that case, where are all the souls? Left behind. They wander here and there, slowly, dim lights flickering in the marshes at night, looking for us. But they're not nearly fast enough, not for us, we're way ahead of them, they'll never catch up. That's why we can go so fast: our souls don't weigh us down.

This speaks to me on multiple levels. On the literal level, it gets at the core of my problems with most modes of transportation --- they really do go too fast. I never learned to drive, in part because of motion sickness but in part because I just could never react fast enough. I'd be sitting at a stop sign for ten or twenty seconds figuring out what to do, while other cars sat wondering WTF I was doing. I can't give directions to someone who is driving me around, because the scenery whizzes by too fast for me to register it, and I end up realizing where we are after the person driving me has already missed the turn. (What I end up having to do is draw out a map ahead of time, and read off from it to direct people). On the slightly less literal level, the same dynamic applies to life in general. I seem to move through time as slowly as I do through space, and with the same level of confusion and inability to plan while moving.

It also seems to work as a parable of industrial civilization: we've become so caught up in going faster --- extracting more and more of the Earth's natural resources to burn for energy, to build more and more gadgets that will use that energy up faster and faster, clearing more and more of the available land to grow food in a supercharged, unsustainable manner to feed more and more people --- that we no longer ask ourselves if we should do whatever it is we're doing at the time. We take the imperatives of our way of life --- to make money, to acquire more and better possessions --- for universal human needs. Most of us, I think, understand perfectly well the destruction our way of life wreaks on the planet, but we can't conceive of the radical changes we'd have to make in order to stop that destruction, so we just accept it.

Our souls don't weigh us down.

Monday, November 24, 2008

Autism in the DSM-V

Yesterday's post on the proposed inclusion of "relational disorders" in the DSM-V got so long, I decided to put the rest of my DSM-V observations in a separate post. Hopefully this one will not reach such an epic length.

First, autism. There are a lot of proposed changes to the diagnostic criteria for all the autism-spectrum labels, which you can read about here at Autism Vox, or here at the American Psychiatric Association's webpage. I don't want to go into all of the proposed changes here, so I recommend clicking the links.

I just want to point out two relatively minor points in the Neurodevelopmental Disorders Work Group's agenda that interest me: first, for the first time they're going to look into how autism might look somewhat different in different groups (they mention females, adults and cultural minorities) and need alternative diagnostic criteria; and second, they're entertaining the notion that autism might not be lifelong.

From the APA's online summary of its Autism and Other Pervasive Developmental Disorders Conference, here's what the panel on International, Cultural and Gender considerations in the diagnosis of Autistic Spectrum Disorders* had to say:

In his introduction, Poul Thorsen, M.D., Ph.D., (Aarhus, Denmark) focused on gender differences, noting that the male-female ratio for a diagnosis of ASD is 5:1 whereas the ratio for childhood autism is 3-4:1. ... Autism sex ratio (male:female) is lower in individuals with ID [Intellectual Disability] than in individuals with normal cognitive functioning and lower in individuals with significant dysmorphology or microcephaly than those without. Data from a Danish psychiatry registry of children born from 1990 to 1999 found that males on average met 0.63 more items than females. ... He concluded that since males consistently met more autism items than females, the current diagnostic criteria may favor the diagnosis of autism in males. (emphasis mine)
Other ideas to come out of that panel were:

  • That studies of autism prevalence are likely to give us a skewed picture of autism itself, since most of the people recruited for those studies are preschool and school-age children signed up for special services
  • That cultural and linguistic factors should be taken into account when diagnosing autism**
  • That sometimes what appears to be autism is actually a response to trauma, and
  • That what constitutes trauma varies among cultures
The panel on whether autism can go into "remission" echoes some of the concerns about diagnostic criteria for autism being too age-specific:
Craig Newschaffer, Ph.D., (Philadelphia, PA), in his presentation, noted that we are still at a point where the connections between [the?] pathology and the phenotype of autism are not understood. How the manifestations of underlying pathology change over time and what, if any correlations exist between pathology and clinical phenotype are still unknown. Regarding the evolution of the behavioral phenotype over the life course, there are very few cross-sectional studies in adolescents and adults, and even fewer longitudinal studies. The lack of availability of age-appropriate measures may contribute to this lack. The few small sample studies that have been published focus on the loss of diagnosis (typically in children) and presentation of previously undiagnosed adults. From the clinical perspective, should the diagnosis of autism be lost when symptom-based criteria are no longer met? This has potential impact on treatment plans and access to services for the child or young adult and their family. The diagnosis of ASD in symptomatic adults is also difficult, due to the lack of tools appropriate for use in adults and the difficulty in obtaining the developmental data required to make a diagnosis of ASD (which must be present before age 3 years). The differential diagnosis is particularly challenging in adults because of the number of other disorders that affect the social domain. These limitations suggest that other features (e.g., nonverbal communication, prosody, subtle use of language, posture, etc.) might prove to be better diagnostic criteria for adults? Without such clarity, it is questionable whether the prevalence of ASD in adult populations can bevalidly and accurately estimated through epidemiological studies.
This has the potential to be a good thing --- in that they're looking to characterize autism across the lifespan, and recognize that adult autistics are more than just autistic children who happen to be grown --- but the question of whether to drop the autism diagnosis from people who no longer meet the "symptom-based criteria" strikes me as leading down a blind alley. It seems to be an attempt to define the problem (of autistics maturing and exceeding doctors' expectations of them) out of existence by declaring those people no longer autistic.

*Of all the panelists quoted/paraphrased above, only one (Poul Thorsen) is on the Neurodevelopmental Disorders Work Group for the DSM-V. So his ideas, at least, are pretty likely actually to make it in there.
**The example given is of adapting the Autism Diagnostic Interview for use in China, where the main language (Mandarin) apparently doesn't really have separate verb tenses for singular and plural, or for past and present, and where "the cultural norm ... is for gestures to be discouraged and for persistence to be highly valued." You can probably imagine how someone used to the way Americans behave around other people might find most Chinese to be "autistic" in their reserve.

Sunday, November 23, 2008

Feminist Issues and the DSM-V

ABFH linked this article from the Los Angeles Times, which calls wider attention to the heated argument in the letters pages of the second July issue of Psychiatric News over the extent to which the process of drafting the DSM-V should be made accessible to the public.

In response to this June 6 editorial, describing the process as "complex but open," Robert Spitzer (the psychiatrist who chaired the DSM-III and DSM-III-R task forces) wrote a letter denouncing DSM-V task force vice-chair Darrel Regier's refusal to give him a copy of the task force's meeting minutes. (That same issue also printed a response, co-written by Regier, DSM-V task force chair David Kupfer, APA President Nada Stotland, and APA Medical Director and CEO James Scully, Jr.).

The LA Times writer, Christopher Lane (who has written a book, Shyness: How Normal Behavior Became a Sickness, which accuses DSM-III-era psychiatry of essentially making up disorders to sell drugs to healthy people), argues that the task force's failure to make the minutes public betrays an insularity and protectiveness that undermine its efforts to improve the DSM's validity:
Spitzer counters that "the real purpose ... is to avoid possible criticism of the ... process." He has called the attempt to revise the DSM in secret "a big mistake" and a likely "public relations disaster."

I fear that I may have unintentionally contributed to Regier's excessively secretive behavior. Back in the 1970s, during the creation of the third edition of the manual, I published much of the correspondence that had circulated between committee members. Some of the exchanges were frankly hair-raising. They included proposals for the approval of such dubious conditions as "Chronic Complaint Disorder" and "Chronic Undifferentiated Unhappiness Disorder." When asked to define how he was using the term "masochism," one leading psychiatrist replied: "Oh, you know what I mean, a whiny individual ... the Jewish-mother type." And so it went for dozens of other terms that later became bona-fide illnesses. (emphasis mine)

Regier obviously wants to prevent any such embarrassment for his task force; he apparently fears the public will not find his committee's work entirely convincing.
The ideas Lane ridicules in this passage (Chronic Complaint Disorder, Chronic Undifferentiated Unhappiness Disorder) were more than just silly attempts to turn everyday grumpiness into a medical problem; they functioned to lend authority to long-standing stereotypes about women, and to deflect attention away from social conditions that might distribute life stresses unequally between the sexes. That's what Carol Tavris argues in The Mismeasure of Woman, in the chapter on women and psychiatry:
Self-defeating Personality Disorder and codependency are the latest incarnations of an old American game that we might call "Name What's Wrong With Women." Every few years a wave of best-selling books sweeps over the land, purporting to explain to women the origins of their unhappiness. In many of the self-help versions of these books, the author begins by describing how she herself suffered from the disorder in question, and, through persistence, effort, or revelation, found the cure.

Thus, in the 1950s, women's problem was said to be their inherent masochism, an idea that derived from Freud's theory that female psychology includes an unconscious need for, and pleasure in, suffering. Wrong, said Martina Horner in the late 1960s. The problem is women's fear of success; the cure is to understand and then overcome their internal barriers to achievement. Wrong, said Marabel Morgan, Phyllis Schlafly, and other religious conservatives in the 1970s. The problem is that women want success, when they should be spending their energies being obedient to God and husband; the cure is to strive to become "The Total Woman," "The Fulfilled Woman," or "The Positive Woman." Wrong, said Colette Dowling in 1981. The problem is that women have a "Cinderella Complex --- a hidden fear of independence"; they must struggle against their desires to be rescued by Prince Charming. Wrong, said a spate of writers in the early 1980s. The problem is that women "say yes when they mean no," and "when they say no, they feel guilty"; the cure is assertiveness training. Wrong, said Robin Norwood in 1985. The problem is that women love too much. Wrong, said a flurry of books in rebuttal. It's not that women love too much but that they love the wrong men --- men who are immature, angry, abusive, chauvinistic, and cold. Wrong, said Melody Beattie in 1987; the poor guys aren't to blame, because they are sick. Women love too much because they are codependent --- addicted to addicts, addicted to bad relationships.

Long ago in The Feminine Mystique, Betty Friedan wrote of "the problem that has no name" --- the vague emptiness and desolation that plagued many women in the postwar era. But in fact the problem has gone by far too many names. The symptoms that all these books attempt to treat are invariably the same: low self-esteem, passivity, depression, dependency on others, an exaggerated sense of responsibility to other people, a belief that it is important to be good and to please others, and an apparent inability to break out of bad relationships. I do not doubt that many women are unhappy, and I do not doubt that these descriptions apply to many women --- and to a goodly number of men. But it is time to ask why these psychological diagnoses of women's alleged inner flaws, which keep returning like swallows to Capistrano, year after year, fail to deliver on their promises. And it is time to ask why the explanations we make of female problems differ in kind and function from those we make of male problems.

Thus, the problems that are more characteristic of men than women --- such as drug abuse, narcissism, rape, and other forms of violence --- are rarely related to an inherent male psychology in the way women's behavior is [related to an inherent female psychology]. When men have problems, it's because of their upbringing, personality, or environment; when women have problems, it's because of something in their very psyche. When men have problems, society tends to look outward for explanations; when women have problems, society looks inward.

For example, psychologist Silvia Canetto has compared attitudes toward people who attempt suicide (typically women) with those toward people who abuse drugs (typically men). Both of these actions, says, Canetto, are "gambles with death"; both actions can be lethal although the individual may not intend them to be. Suicide attempters and drug abusers share feelings of depression and hopelessness. Yet mental-health experts tend to regard suicide attempts as a sign of a woman's psychological inadequacy, reports Canetto, whereas they regard drug abuse as "caused by circumstances beyond the person's control, such as a biological predisposition."

Likewise, people speculate endlessly about the inner motives that keep battered wives from leaving their husbands. Are these women masochistic? Do they believe they deserve abuse? Are they codependent, unwittingly collaborating in the abuse against them? Whatever the answer, the problem is construed as the battered wives, not the battering husbands. But when experts ponder the reasons that some husbands abuse their wives, they rarely ask comparable questions: Are these men sadistic? Do they believe they deserve to abuse others? Rather, their explanations focus on the pressures the men are under, their own abuse as children, or the wife's provocations. Male violence is not considered a problem that is inherent in male psychology; but the female recipients of male violence are responsible because they "provoked" it or "tolerated" it or "enabled" it or are "masochistic" --- problems presumed to be inherent in female psychology. A man who gets into a fight with a stranger and hits him may spur an observer to ask, "Why is this guy so aggressive and hostile?" But if the same man goes home and hits his wife, the same observer is likely to wonder: "Why does she stay with him?"
The DSM-III/DSM-III-R disorders Tavris cites --- Self-defeating Personality Disorder (which appears in an appendix to the DSM-III-R), Dependent Personality Disorder, Histrionic Personality Disorder (which are not included in the passage I quoted, but are discussed in a later section of the same chapter) --- explicitly locate the reasons for women's problems in their own defective personalities. Because the symptoms of these disorders closely match common stereotypes of feminine behavior, and because personality disorders in general are understood to reflect long-standing self-destructive patterns in one's thought and behavior, women with the kind of diffuse, generalized malaise that Friedan's interviewees complained of, and that might in the consciousness-raising groups of the 1970s have prompted an examination of the conflicts between women's desires and society's expectations of them, are now once again directed to blame themselves for their unhappiness. The only difference is that now, instead of merely being labeled sick for failing to be feminine enough, a woman can also be pathologized for being too feminine.

I bring all this up because one of the proposed new categories of mental illness being considered for inclusion in the DSM-V threatens to do a similar thing: to muddy the waters around lingering issues of gender inequality by overpersonalizing those issues.

The diagnostic category in question would encompass the relational disorders --- those "persistent and painful patterns of feelings, behavior and perceptions involving two or more partners in an important personal relationship." No individual would get a diagnosis; whatever pathology exists is understood to be an emergent property of the relationship --- a diseased whole that might be composed of perfectly healthy parts who just interact pathologically. While this is an intriguing idea, and strikes me as potentially very useful in therapy, I worry about its implications for domestic abuse. The Research Agenda for DSM-V mentions domestic violence explicitly, classifying it as Marital Abuse Disorder or, alternatively, Marital Conflict Disorder With Violence. I am extremely uncomfortable with classifying all, or even most, domestic violence as a diseased interaction because that conception of it implies that both partners contribute to the hostility, when the simple truth is that all of the blame lies with the battering partner. An abuser could easily use the pretext of wanting to work through a "relational disorder" to maintain contact with his victim, or guilt her into staying with him. Abuse victims already have a strong tendency to blame themselves for their partners' violence, and a DSM diagnosis that seems to corroborate that belief would be a giant step in exactly the wrong direction.

To get back to the beginning paragraphs, this is exactly the sort of criticism that would be brought to the attention of the DSM-V task force if they made their discussions public. While there are feminist psychologists, they are a small minority within the profession, and I doubt more than one or two (if any at all) are represented on the task force. Without opening the discussion to the public, and inviting the feminist critique that is marginalized within psychiatry, these objections may never be heard, and psychiatry will continue to lend its support to societal misogyny.

Monday, November 17, 2008


I know, it's not exactly timely to post about Halloween in mid-November. But I just got these pictures off my sister's camera, and I thought you all (particularly those in areas without seasons, or whose seasons occur at opposite times of the year from mine) might appreciate some fall-foliage pics.

We have five trees in our backyard --- a maple, an ash, two oaks and a black walnut. The maple is the most spectacular:

Also, every year I carve at least one pumpkin, usually a lot more. Last year, I carved five or six of them at my boyfriend's house (actually a group home for developmentally disabled adults where his roommate worked --- she and I together carved 10 or 12, and placed them out for the residents to admire). Then I came home and carved a likeness of Darth Vader for my own doorstep. (That was a great year!)

This year was nothing like that: I did two, and fairly simple designs, although one was fairly time-consuming, since I had to peel off the skin on all the teeth:

Here I am with both of them, which I named Mr. Teeth and the Zombie Pumpkin. (Yes, I always name at least one of my pumpkins --- last year featured El Gordo, Darth Pumpkin and the Imperial Gourdsmen). You can probably tell which one Mr. Teeth is.

Wednesday, November 12, 2008

More About Gender Variance, Autism and ABA, From Michelle Dawson

At The Autism Crisis, Michelle Dawson has a brilliant post up drawing an analogy between the practice of "treating" autism with ABA now and the 1970s use of ABA to "treat" feminine behavior in boys. She hammers this home with particular effect when she quotes various reports from the UCLA Feminine Boy Project about the ethical duty they thought they had to save these boys from lives of marginalization and "hardship" by making them normal.

The other point of similarity she finds between the two phenomena is the extent to which the intervention is being done for the parents rather than for the child.

An excerpt:

Gender disturbed children desperately need treatment.
This quote is from Rekers, Bentler, Rosen & Lovaas (1977). It concludes one of multiple peer-reviewed articles authored by prominent researchers, defending a highly successful early intensive ABA-based treatment (see also Rekers, 1977; Rosen, Rekers & Bentler, 1978; Rekers, Rosen, Lovaas & Bentler, 1978). This treatment was part of the UCLA Feminine Boy Project, which for some time ran concurrently with the UCLA Young Autism Project. Its unprecendented success in treating what was considered to be an intractable pathology was reported by NIH-funded UCLA researchers in peer-reviewed journals (Rekers & Lovaas, 1974; Rekers, Lovaas & Low, 1974). One of the stated purposes of this treatment was to "cure" or "prevent" homosexuality.
The UCLA researchers repeatedly wrote that the young boys targeted by their early intensive ABA-based treatment suffered terribly and were in pain. At all possible levels (physical, emotional, economic, social, etc.), their prognosis was described as "extremely poor" with a high risk of criminal, anti-social and self-destructive behaviour. Their future was one of "numerous crippling difficulties" and "pain, misery and despair" (all quotes from Rekers et al., 1977).
Then there were the parents of these reportedly severely disordered children, parents whose needs, values and goals were considered paramount. Therefore, according to the UCLA researchers, there was a "moral and ethical obligation" to intervene and provide a treatment which had been demonstrated to be effective. (Emphases mine, except for the initial quote).
One could very easily substitute "autism" for "homosexuality" in those paragraphs, and you'd get a passable rendition of the current conventional wisdom regarding autism. Yet, of these identical scenarios, one is considered a gross violation of human rights and the other is considered a necessary medical intervention.

Read the whole thing; Michelle Dawson outdoes herself ferreting out instructive passages from the literature.

Sunday, November 9, 2008

The Color and Shape of Thought

Several months ago, Catana recommended Nancy Kress's Sleepless trilogy to me, and just this past couple weeks I finally got my hands on the first book, Beggars in Spain. While there were a lot of things that interested me about this book, I'd have to say that it was Kress's rendering of her characters' thought processes that excited me the most.

While Beggars in Spain is not about autism per se, it is about a neurological minority who are stigmatized for their difference. However, this neurological minority is human-created rather than spontaneously occurring (although, once the people with the mutation --- called Sleepless, since they don't sleep --- grow up and have children, there come to be spontaneously-occurring Sleepless).

Of the two characters whose thinking is most vividly described, one is a genetically-modified, hyperintelligent Sleepless and the other is a baseline human, illiterate and lacking the memory, verbal dexterity, problem-solving skill and reasoning ability prized by his "meritocratic" society*, though his more intuitive, nonverbal thought processes often give him insights his more organized, logical counterparts overlook.

The first character, Miranda (a child who lives on an all-Sleepless orbiting space colony), has a pattern of thinking she calls "strings", in which every semantic component of a phrase gives rise to a chain of associations, and each chain forms part of a larger design. When she uses this method in school**, she often comes up with different answers than the "right" ones:
The terminal was in visual mode only: they were practicing reading. The problem was "doll:plastic::baby:?" Miri said, "My turn," and typed in "God." The terminal flashed a frowning face.
"That's not right," Joan said, with some satisfaction.
"Yes, it is," Miri said, troubled. "The terminal's wrong."
"I suppose you know more than the terminal!"
"God is right," Miri insisted. "It's four strings down."
Despite herself, Joan looked interested. "What do you mean, four strings down? There's no strings in this problem."
"Not in the problem," Miri said. She tried to think how to explain it; she could see it in her mind, but explaining it was harder. Especially to Joan. Before she could begin, Ms. Patterson was there.
"Is there a problem here, girls?"
Joan said, not nastily, "Miri has a wrong answer, but she says it's right."
Ms. Patterson looked at the screen. She knelt down beside the children. "How is it right, Miri?"
Miri tried. "It's four little strings down, Ms. Patterson. See, a 'doll' is a 'toy' --- the first string goes from doll to toy. A toy is for 'pretend,' and one thing we pretend is that a shooting star is a real star, so you can put 'shooting star' next in the first string. To make the pattern work." So many words was hard work; Miri wished she didn't have to explain so hard. "Then a shooting star is really a meteor, and you have to make the string go real now, because before you made it pretend, so the end of the first string, four little strings down, is 'meteor.'"
Ms. Patterson was staring at her. "Go on, Miri."
"Then for 'plastic,'" Miri said, a little desperately, "the first string leads to 'invented.' It has to, you see, because 'toy' led to 'pretend.'" She tried to think of a way to explain that the fact that the little strings were one place off from each other was part of the whole design, echoed in the inversion she was going to make of the same words in substrings two and three, but that was too hard to explain. She stuck to the strings themselves, not the overall design, which troubled her because the overall design was just as important. It just took too long to explain in her stammering speech. "'Invented' goes to 'people,' of course, because people invent things. The people string leads to 'community,' a lot of people, and that string has to go to 'orbital,' because then the two strings lined up next to each other make the problem say 'meteor:orbital'."
Ms. Patterson said in a funny voice, "And that's a reasonable analogy. Meteor does bear a definable relation to orbital: one natural and inhuman, one constructed and human."
Miri wasn't sure what all Ms. Patterson's words meant. This wasn't going right. Ms. Patterson looked a little scary, and Joan looked lost. She plunged ahead anyway. "Then for 'baby,' the first string leads to 'small.' That leads to 'protect,' like I do [my brother] because he's smaller than me and might get hurt if he climbs too high. Then the little string goes to 'community' because the community protects people, and the fourth little string has to go to 'people' because a community is people, and because it was that way upside down under 'plastic,' and a lot of our orbital is made of plastic."
Ms. Patterson still had her funny voice. "So at the end of three sets of strings --- Joan, don't change the screen just yet --- at the end of these strings of yours, the problem reads 'meteor is to orbital as people is to blank' and you typed in 'God'."
"Yes," Miri said, more happily now --- Ms. Patterson did understand! --- "because an orbital is an invented community, while a meteor is just bare rock, and God is a planned community of minds, while people alone are just one by one bare."
Afterwards, Grandma was quiet a long time.
"Miri, do you always think this way? In strings that make designs?"
"Yes," Miri said, astonished. "Don't you?"
Grandma didn't answer that. "Why did you want to type in the analogy that exists four little strings down on the terminal?"
"You mean instead of eight or ten strings down?" Miri said, and Grandma's eyes got very wide. (Italics in the original, emphases mine. I have also removed Miri's stutter for the sake of readability.)

I thought this passage showed particular empathy for how it feels to try and communicate a train of thought like this. Miri's desperation and panic, as she worries that Joan and Ms. Patterson aren't following, are very familiar. Am I crazy? Is this just not logical at all, and I don't see it? Am I not logical? Or am I just failing spectacularly at showing them the logic of it? I also recognized Miri's strategic decision not even to try to convey the more abstract, spatial qualities of her thought --- later in the book, her brother will create a computer program that allows them to display the whole pattern, thus obviating the need for speech and its misleading simplification.

My thought is not exactly like Miri's, though, because even though the relations between her "strings" might be more geometrical than verbal, each "little string" --- the single steps between elements in a design --- is semantic in nature. It's a relationship between elements that is easily describable in words: for instance, many of the examples in the above passage are linked by category, properties or function. If anything, this is perfectly conventional linear thinking extended to one more spatial dimension.

Interestingly, there's another character in the book whose thought shares with mine all the traits that Miri's does not. It's completely nonverbal, and visual at a more immediate level:
They told him he had to learn to read, and he worked at the terminal every day, even though it was slow scooting and he didn't see how he would ever use it. Terminals spoke you whatever you wanted to know,and when there were words on the screen there wasn't as much room for graphics. Graphics made more sense to Drew than words anyway. They always had. He felt things in graphics, colors and shapes in the bottom of his brain that somehow floated up to the top and filled his head. The old lady was a spiral, brown and rust-colored; the desert at night filled him with soft sliding purple. Like that. But they said to learn to read, so he did.
While Miri's thought is essentially verbal, with words (or other semantic units --- bits of code, amino acids, whatever) serving as the basic unit and the spatial qualities only emerging at higher levels of complexity, Drew's thought is visual on its simplest level. My thought, while structurally a lot like Miri's, also uses vague visual symbolism rather than words or logical formulations. The elements of my thought are images, and the connections between elements --- Miri's "strings" --- can be visual associations. An image, as it moves or subtly changes color, comes to mean something else, and that meaning does not always map easily onto a logical statement. (The motion is also a crucial part of my thought: like Miri's three-dimensional logic webs, the movement of my mental images adds a layer of complexity).

One thing I find striking, in light of the ongoing discussion of intelligence and functional labeling in the autism blogosphere, is the huge gap between the apparent intelligence of these characters who both embody aspects of my thinking. Miri is clearly supposed to be a genius, while Drew is just as clearly meant to be a little thick***.

*The major narrative framing the story is that of America drifting from its current social structure to a more rigid, "Gattaca"-esque hierarchy, with Sleepless at the very top, controlling the biggest, most lucrative business empires; non-Sleepless who still possess customized genes for heightened intelligence, driven personalities, good looks etc. running the media, politics, and much of the business world; and the vast non-genetically-modified majority existing on welfare, since they can't possibly compete for jobs with superhumans.

**I loved the fact that Kress used analogies as the test case for Miri's thinking leading to "wrong" answers. Analogies are notorious for having many unforeseen, alternate answers!

***Kress does, through this character, effectively demolish notions of a single, measurable thing called "intelligence," which I think is awesome. For all his illiteracy and repeated academic failures, Drew still manages to become a great artist and to have great insight into other characters' states of mind.

Saturday, November 8, 2008

I Write Letters

From Sarah of Cat in a Dog's World and Nicole Belle of Crooks and Liars (via Shakesville), I heard about two very problematic candidates for high-level positions in the Obama administration: Larry Summers for Secretary of the Treasury and Robert F. Kennedy, Jr., for head of the Environmental Protection Agency.

Here's what I wrote on the "Contact" page of the new Obama website:
Dear President-Elect Obama,

In your campaign, you emphasized the need for change --- particularly change in the form of abandonment of the Bush administration's reckless commitment to ideology-based, counterfactual assumptions. That was the main reason I voted for you: because I wanted to see a President whose decisions would come from a thorough consideration of the evidence, not from gut feelings or party lines.

Yet I see two names mentioned for high offices in your administration --- Lawrence Summers for Secretary of the Treasury and Robert F. Kennedy, Jr., to head the Environmental Protection Agency --- whose selection would only propagate three of the more pernicious assumptions underlying Bush-era policy.

Those assumptions are: first, that scientific consensus can be ignored in policymaking; second, that less regulation and freer trade are always better economic policies; and third, that women are naturally second-class citizens. Choosing Lawrence Summers for Treasury Secretary (a position he held during the Clinton years) would commit US fiscal and trade policy to more of the same heedless deregulation that has destabilized our markets and caused millions of jobs to go overseas. Summers has also indicated a belief that women's continued underrepresentation in scientific, technical and mathematical professions is due to their own lack of interest or aptitude, which is a belief in conflict with the goal mentioned elsewhere on this site of including more women in those positions, both directly within your administration (and how would women accountants and financial analysts fare under a Secretary Summers?) and in academia and industry. Robert F. Kennedy, Jr., impassioned environmental activist though he may be, has publicized the idea that mercury compounds in vaccines cause autism, which is believed by almost every scientist in the field of autism to be complete nonsense. Given the urgency and complexity of the environmental problems we face, it's extremely important to make sure these decisions are in capable hands.

We can do better.

Yours in hope,


You can make your voice heard in several ways: you can fill out the comment form, sign this petition, and/or email transition-team leader Valerie Jarrett at (H/T to Unapologetic Feminist for that suggestion).

Sunday, November 2, 2008

Violence Against Disabled Women

Via F.R.I.D.A., and also making the rounds on Feministing and Feministe, comes this article from Reuters on intimate-partner violence against women with disabilities.

The study's authors, Brian Armor and colleagues, analyzed the data from the CDC's 2006 US-wide survey on "preventive health factors and risk behaviors that are linked to chronic diseases, injuries and preventable infectious diseases in the adult population," comparing rates of intimate-partner violence among disabled and nondisabled women.
They found that women with a disability were significantly more likely than women without a disability to report experiencing some from of intimate partner violence in their lifetime (37.3 percent versus 20.6 percent).

Women with a disability were more likely to report ever being threatened with violence (28.5 percent vs 15.4 percent) and hit, slapped, pushed, kicked or physically hurt (30.6 percent vs. 15.7 percent) by an intimate partner.

Women with a disability were also much more apt to report a history of unwanted sex by an intimate partner (19.7 percent vs 8.2 percent).
Speaking at the American Public Health Association meeting in San Diego, Armor ventured some ideas as to why this is the case:
Perhaps, women with disabilities are vulnerable to intimate partner violence because their disability might limit mobility and prevent escape; shelters might not be available or accessible to women with disabilities; the disability might adversely affect communication and thus the ability to alert others or the perpetrator might control or restrict the victim's ability to alert others to the problem.
He also hypothesized that disabled women might depend on their abusers for care, and might be more afraid of being left to fend for themselves or institutionalized than of staying with their abusers. Googling around for more information, I found this fact sheet on domestic violence against Australian women with disabilities, this literature review in the Annals of the New York Academy of Sciences, and this Canadian study from this past spring that anticipated Armor's findings of a huge gap in levels of violence directed at disabled vs. nondisabled women, and also identified some characteristics that distinguish violent partners of disabled women.

The fact sheet provided a few more reasons disabled women tend not to seek help, as well as some reasons why they experience so much more violence in the first place:

Social myths - people with disabilities are often dismissed as passive, helpless, child-like, non-sexual* and burdensome. These prejudices tend to make people with disabilities less visible to society, and suggest that abuse, especially sexual abuse, is unlikely.
Learned helplessness - people with disabilities, particularly people with cognitive disabilities or those who have been living in institutions for a long time, are encouraged to be compliant and cooperative. This life history can make it harder for a woman to defend herself against abuse.
Lack of sex education
- there is a tendency to deny sex education to people with intellectual disabilities. If a woman with no knowledge of sex is sexually abused, it is harder for her to seek help because she may not understand exactly what is happening to her.
Dependence - the woman may be dependent on her abuser for care because her disability limits her economic and environmental independence.
Misdiagnosis - authorities may misinterpret a cry for help; for example, a woman’s behaviour might be diagnosed as anxiety rather than signs of abuse. In other situations, workers may not be aware that domestic violence also includes financial or emotional abuse, or may not be sensitive to the signs.
The abuser takes control
- if the woman seeks help, follow-up may be difficult because the abuser isolates her and prevents her from using the phone or leaving the house.

Several of these are the same reasons nondisabled women often choose not to report their abuse to police --- they're afraid the police won't believe them, their abusers isolate them, they're afraid trying to leave will make things worse (although nondisabled women do not have to fear being institutionalized, they do fear that the abuser will retaliate against them, and possibly kill them), and they may be financially dependent on their abusers. Disabled women just face severer versions of the same things, since they tend to be more isolated, less mobile and less able to live on their own than nondisabled women.

Depending on which study you're reading, you'll come up with different numbers for the proportion of abusers who are also the victims' intimate partners. (Other people likely to be abusers are family members, caregivers, neighbors and health-care professionals). The fact sheet says that 43% of abusers of disabled women are male partners, and another 11% are female partners. The New York Academy of Sciences article cites this 1991 review by the University of Alberta's Dick Sobsey and Tanis Doe, which found a significant portion (44%) of abusers having come into contact with their victims through the disability-support system; they were paid caregivers, psychiatrists, transportation providers, foster parents and other disabled people. (Only 4% of perpetrators in this study were intimate partners).

Based on the percentage of offenders that are associated with specialized services, it would be reasonable to expect risk to increase by an additional 78% due to exposure to the "disabilities service system" alone. The extent of this elevation of risk would be adequate to explain most of the findings of increased incidence (of rape and molestation) among individuals with disabilities. (emphasis mine)

Most of these offenders were never charged; the victims pressed charges in 22% of cases, and of those, only 8% (36% of the 22% who were charged) were convicted. Most often, the victims chose not to report the incident, believing the risk of retaliation or of being cut off from needed services far outweighed the slim chance at conviction, although there were also a few cases where police or prosecutors refused to press charges.

Another worrying finding from Sobsey and Doe is the role of tranquilizing medication in abuse by caregivers:

It is frightening and ironic that the victims' reports that we analyzed included several cases of victims who developed non-compliant or inappropriate behavior as a response to their abuse, and were placed on intrusive behavior-management programs or tranquilizers to suppress their behavior before the true cause was determined.

They also identify two factors --- inhibitions that normally prevent people from sexually abusing one another as often as they might which are missing from the institutional settings where most of their incidents occurred --- contributing to this increased likelihood of abuse. The lack of scrutiny and oversight of most of these places, due to their isolation and tendency to be understaffed, allows abusive caregivers to abuse with impunity, and the overall societal tendency to devalue disabled people both makes the victims less willing to come forward and other caregivers whom they might tell less likely to believe them.

Appearing in the same issue of Sexuality and Disability as Sobsey and Doe's article is an analysis of the dynamics of institutional sexual abuse by Maureen Crossmaker. She corroborates a lot of the things I've quoted elsewhere in this post: common beliefs about mentally ill people and cognitively or developmentally disabled people predispose people away from seeing them as fully human and possessing rights; residents in institutions are dependent on staff for their survival and well-being, and taught to be compliant and passive; institutions are isolated, insular and intensely hierarchical, which conditions breed sexual abuse**; and victims who complain of abuse are often dismissed as psychotic or incompetent and drugged into submission.

More recent studies, like the Medical Science Monitor article, say the most common source of violence in the lives of disabled women is intimate relationships (which constitute the biggest threat to nondisabled women as well). Both Sexuality and Disability articles I cited focus on institutionalized mentally-ill and developmentally-disabled populations, which would explain the larger share of abuses committed by healthcare workers in those samples.

The above-linked article compared survey data from disabled and nondisabled women asked about their (heterosexual) relationships, looking for relationships between their answers and the level of violence in the relationship, and for differences in factors influencing relationship violence for disabled vs. nondisabled women. They found three factors that were common to both groups of women: their male partners, if violent, tended to be possessive, sexually jealous and espouse "patriarchal dominance."*** Only for the nondisabled women was heavy drinking associated very strongly with violence, and, though the correlation between the three shared factors and violence was stronger for them, the disabled women were more likely to have partners who met those criteria. Patriarchal dominance was the characteristic that was most common in partners of disabled women; those men espoused patriarchal dominance at a rate 2-3 times that of nondisabled women's partners.

*This myth was certainly in evidence in the Ashley X case --- one of the reasons her parents gave for stunting her growth and removing her breast buds was that they thought Ashley would be safe from rape if she didn't look like a woman. Obviously, the myth of the asexual PWD works in tandem with the myth that rape is about sexual attraction --- much like the myth that fat women don't get raped.

**These characteristics also go a long way toward explaining the epidemic levels of rape in prison. The one difference I can see between them is that people outside the prison system are generally aware of prison rape and accept it, while people do not seem to be aware of rape in psychiatric institutions and assisted-living facilities.

***The surveys included one question meant to assay for each of these traits: the possessiveness and jealousy questions were fairly self-evident --- asking directly if the women's partners were jealous, or if they wanted to know where the women were all the time --- but the "patriarchal dominance" question asked if the men controlled the finances and didn't allow the women access to them. That is certainly an instance of patriarchal dominance, but I am not sure it's particularly universal. Maybe it is among men with that high a level of male-supremacist thinking.