This is What Ableism Looks Like

My worried frenzy about the new Jodi Picoult book continues. With a bit of googling, I found this list of book club discussion questions. [warning: may be spoilers in link.] Here's one of the questions:

Do you know anyone with Asperger's syndrome? Did the descriptions of Jacob fit what you know of that person?

Let us count the ableist assumptions: First and most glaringly, there's the assumption that autistic people won't be reading the book. There's also the more unspoken assumption that the descriptions of this one character ought to match the way "real" Asperger's autistics are. Because we're all the same, you know.

This is the sort of offensive shit that the non-autistic-person-as-default assumption perpetuates.

A note to about.com Book Club Discussion: We read. And we're not carbon copies of each other. Kindly cease with the ableist assumptions.

Jodi Picoult and Ableism or Oh No!

I come bearing terrible news. Jodi Picoult, the popular ultra-melodramatic novelist, has discovered Asperger's Syndrome. Her newest novel, House Rules, is about a family in which the 18-year-old son, Jacob, is an Asperger's autistic and ends up being suspected of murder. By the sounds of it, it has all the makings of a typical Picoult book: legal drama, family drama, ableism.

[NOTE: The following post contains some spoilers for Jodi Picoult novels, particularly My Sister's Keeper and Handle With Care.]

I admit, with some embarrassment, at having read several Picoult novels. You can criticize Picoult's sappy prose and contrived plots all day, and you'd be right. But the woman does have a knack for producing long stories that make you want to read more. I have to give her that. But now that she's turned her tragedy-efying gaze to autism, I'm just pissed.

In that, I guess I now know something about how people with leukemia (past or present) and osteogenesis imperfetta felt about Picoult's previous books. My Sister's Keeper, the book which put Picoult on the literary map, riveted audiences--including me, I have to admit--in its fascinating explorations of a modern-day ethical conundrum: is it okay for parents to use genetic selection to have a child who is a perfect match for an already-existing child whose life depends on it? And when it comes to one child donating blood, platelets, bone marrow, and organs to the other, what are the donor child's rights? How much is too much? This question in and of itself is not necessarily ableist, in my opinion, but in Picoult's hands it becomes so. The book is full of content which basically states that the life of someone with difficult-to-treat leukemia isn't worth living. It's offensive. It's ableist. And one tell-tale sign of its ableism is Picoult's failure to give the character with disabilities a voice until the very end of the book. Kate is an object of pity, an object which makes her family member's lives more difficult, but she herself is denied a voice--except to say that she doesn't want to live anymore. (Yes, yes, this is a bit of an oversimplification, but not much of one.)

In Handle With Care, Picoult ratchets up the ableism to another level. The novel deals with the question of wrongful birth lawsuits--lawsuits in which parents of a disabled child sue their obstetricians for failure to prenatally diagnose the disability. The whole premise of such lawsuits is that the birth of the disabled child is "wrongful"--that parents would have aborted said child if they'd known about the disability. Picoult takes the question of whether it's ethically acceptable for parents to bring a wrongful birth suit--a question with a self-evident answer, if you ask me--and turns it into a huge ethical drama. We get hundreds of pages which amount to a dramatized discussion of the value of the life of someone with OI. And, as in My Sister's Keeper, the actual character with a disability (Willow) is rendered as an object of pity and philosophical debate. She herself has no real voice--until the end of the book, in which she narrates as she drowns herself in what may or may not be intentional suicide. I only wish I was kidding about this. Picoult is characteristically ambiguous, and I admit that it's certainly possible to interpret the ending as a tragic but natural response to the ableism of a wrongful birth suit. But this is by no means clear in the narrative. Picoult's method of "showing both sides" on these ethical issues amounts to moral cowardice and ableism in this instance.

If I had the time and inclination, I could no doubt continue to explain why these books are so problematic from a disability-rights standpoint. In fact, I had thought about writing a blog entry about Handle with Care when I first read it almost a year ago. That my anti-Picoult energies have been most forcibly stirred by Picoult taking on autism/Asperger's is, I'm afraid, a sign of my own empathic failures (though not in a Simon Baron-Cohen-type way). I want to make clear the fact that the ableism against people with OI in Handle with Care is no less despicable than the forthcoming ableism against autistics in this new book. House Rules, worryingly, looks to be a continuation of the pattern of ableism in Picoult's ever-popular novels.

While some people may criticize me for assuming the worst of House Rules, I would point out that Picoult's record on disability-issues doesn't make me terribly inclined to give her the benefit of the doubt. And in any case, Picoult (or her marketing team) have kindly made an excerpt of the book available on her website, so that I can comment on it without buying it. (Indeed, the book is not out until next month.)

From what I can tell, House Rules may very well be better than its predecessors in giving voice to the character with disabilities. The autistic character, Jacob, seems to be getting considerably more narration time than Willow or Kate got. Unfortunately, it seems as though we might have to be worried that Jacob, like too many other autistic fictional characters, is a laundry list of every single autistic trait instead of an actually developed human being. (Let's be clear: no one has every single autistic trait, partially because some traits are mutually exclusive.) House Rules may well end up to be better on this count than The Curious Incident of the Dog in the Night-Time, but perhaps not. It's not a terribly high standard, at any rate, and all of this is an outsider's view of autism. Which won't stop everyone I tell my diagnosis to from now on from comparing me to Jacob, of course. Grr.

Based on the excerpt itself and a review, it seems as though Picoult will be taking on all of the controversial issues of the autism world, including whether Asperger's is autism and possibly the whole cure question. It also seems as though the story, unsurprisingly, largely revolves around how the poor non-autistic family members have to deal with the terrible burden of having an autistic relative. Sigh.

I submit this excerpts as disturbing examples of the ableism which is very likely present in the entire book:

The mother:

In my mind, Asperger’s isn’t a label to describe the traits Jacob has, but rather the ones he lost. It was sometime around two years old when he began to drop words, to stop making eye contact, to avoid connections with people. He couldn’t hear us, or he didn’t want to. One day I looked at him, lying on the floor beside a Tonka truck. He was spinning its wheels, his face only inches away; and I thought, Where have you gone?

The brother:

I have twenty-four stitches on my face, thanks to my brother. Ten of them cut through my left eyebrow, thanks to the time that Jacob knocked over my high chair when I was eight months old. The other fourteen are on my chin, from Christmas 2003, when I got so excited about some stupid gift that I crumpled the wrapping paper, and Jacob went ballistic at the sound. The reason I’m telling you this has nothing to do with my brother, though. It’s because my mother will tell you Jacob’s not violent, but I am living proof that she’s kidding herself.

Jacob himself:

I was diagnosed with Asperger’s Syndrome long before it became the mental-health-disorder-du-jour, overused by parents to describe their bratty kids so that people think they’re supergeniuses instead of simply antisocial.

[...]

At different times, the media has posthumously diagnosed certain famous people with Asperger’s. Here is just a sampling:

1. Wolfgang Amadeus Mozart
2. Albert Einstein
3. Andy Warhol
4. Jane Austen
5. Thomas Jefferson

I am ninety-nine percent sure not a single one of them had a meltdown in a grocery store and wound up breaking a whole shelf of relish and pickle jars.

I think I've made it pretty clear on this blog that I'm not a fan of historical diagnosing, but this excerpt opposes it for all of the wrong reasons. Because you couldn't possibly be autistic and a great artist/scientist/statesmen. (And also, I'm pretty sure that one reason why Mozart, Einstein, Austen, and Jefferson never had a grocery store meltdown is because there was no such thing as grocery stores when they were alive.)

Ms. Picoult, I'm one of those demon autistic children whose had meltdowns in grocery stores (and other places, too). But now that I know I'm autistic, I don't think of myself as defective for it, and I don't think I'm unique in this regard. You may consider us defective for our oddities--oh, excuse me, "symptoms"--but we do not.

If this excerpt is any indication of what House Rules has in store for us, I am seriously concerned. With the combination of Picoult and autism, the book is virtually guaranteed to be a best-seller, blighting my vision when I enter Barnes & Noble for months to come.

Also, I want to stop myself from actually buying it. I say this with my head hanging in shame.

New Study on Bullying: Water is Wet

Yahoo! News reports an apparently newsworthy and ground-breaking new study: kids who get bullied are more likely to have difficult understanding nonverbal communication. (By which they mean "normal" nonverbal communication, of course.)

This is supposed to be news?

While I support respectful, pro-neurodiversity social skills education for children who have struggles in that area, the article and researchers' comments sound like a lot of victim-blaming to me. The whole study's design is designed around ableist victim-blaming, in fact: let's figure out bullying by identifying what's "wrong" with the victims. G-d forbid we look at what the bullies themselves are doing. This kind of thinking, though perhaps grounded in pragmatism, naturalizes bullying and puts the responsibility for preventing bullying solely with the victims--you know, we defective people who don't understand social communication in standard ways.

To teach social skills, Lavoie advises a five-step approach in his book "It's So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success" (Touchstone, 2006). The process works for children with or without learning disabilities and is best conducted immediately after a transgression has been made.

1) Ask the child what happened and listen without judgment.

2) Ask the child to identify their mistake. (Often children only know that someone got upset, but don't understand their own role in the outcome.)

3) Help the child identify the cue they missed or mistake they made, by asking something like: "How would you feel if Emma was hogging the tire swing?" Instead of lecturing with the word "should," offer options the child "could" have taken in the moment, such as: "You could have asked Emma to join you or told her you would give her the swing after your turn."

Got to love the assumptions here. If a kid is treated badly by one of hir peers, it must be the kid's fault. They, apparently, are the ones who did something "wrong." Not the actual perpetrators of physical and verbal abuse.

This is not harmless rhetoric. These are the sort of attitudes which cause the victims of bullying to remain silent about their experiences to parents, teachers, and other authority figures. Because of the pervasive assumption that it's all our fault, anyway.

For these researchers, fixing the problem of bullying involves "fixing" the victims to make them more socially acceptable.

What about making the act of bullying socially unacceptable?

I look forward to the day when bullies are pathologized to nearly the same extent as various social misfits are.

Irony

The same people who bemoan the supposed "lack of safety testing" with regards to vaccines are going to be among the most vociferous defenders of a physician who experimented with children.

This particularly noxious form of ableism in the anti-vax movement has been striking to me for a long time. The same people who claim that vaccines haven't been tested to their idiosyncratic standards are the first to support giving autistic children untested, potentially dangerous "treatments." The message is clear: Standards of medical and research ethics are only important for (allegedly) "normal" children. If you're an autistic kid, parents and "doctors" have the right to experiment on you and try dangerous and unproven "treatments" on you as much as they please--scientific standards and ethics be damned.

When will anti-vaxers hold biomed practitioners to a fraction of the (impossibly high) standard they set for vaccines?

Book Review Series: The Ethics of Autism

This may (or may not) be the first part in a series discussing The Ethics of Autism: Among Them, But Not of Them by Deborah R. Barnbaum (Indiana University Press, 2008).

I picked up this book a few weeks ago because it caught my attention. When I first looked at it I hoped, despite a few indicators to the contrary, that there would be some pro-neurodiversity content.

After now having read the introduction, I have to doubt that. The introduction is full of the "Theory of Mind" claptrap, which it uncritically accepts. Accepting this premise, the introduction continues to muse philosophically about autistic people and membership to "the moral community," basically indicating that some kind of new theory is needed in order to accommodate autistic people. This is apparently the subject of Chapters 1 and 2, which I have not yet read, and hence I can't speak much to Barnbaum's reasoning. But I have to say that I find these kinds of questions incredibly irritating and dehumanizing. Autistic people do not need non-autistic people (using simplistic schematics of autism devised by other non-autistic people) to theorize in order to recognize our humanity or membership to "the moral community" or however else you want to put it. Barnbaum herself describes this series of issues as "questions about the value of autistic lives" (8). Hello, academic ableism.

The rest of the book doesn't look much more promising, based on Barnbaum's overview. I get the impression that she thinks she's inviting discussion on a bunch of Profound and Fascinating Topics. I don't see it; the ethical answers to her questions seem rather self-evident to me. The question of who should decide (and whether) to administer a "cure" to autistic adults should one become available seems pretty basic--unless one shares Barnbaum's bizarre assumptions that autistic people are completely noncomparable to non-autistic people and may not be true "agents." Heck, even many anti-neurodiversity folks are against forcibly curing an autistic adult who communicates (in a socially recognizable manner) the desire to not be cured. Yet this is a cutting-edge question in bioethics?

While the introduction concludes with some vaguely pro-neurodiversity sentiments, I find them pretty dissatisfying in light of the various postulations which precede them.

Why is our personhood and right to autonomy up for debate?

Even if Barnbaum does have some (peculiar) kind of pro-neurodiversity sentiment, her project seems to be entirely misconceived. She starts with presumptions which treat autistic people and non-autistic people as beings from separate planets, are overly simplistic, and are silencing of autistic voices.

It is this last problem which is most damning. When I first saw the book, I was pleased to see that she included sections entitled "Voices of Autism" centered around individuals, including Jim Sinclair. I assumed that the book featured writings from Sinclair and other autistic people. Wrong. It turns out that the "Voices of Autism" sections are nothing more than brief biographies of said autistic people, including very short summations of their views, and typically a few short quotes. Is this Barnbaum's method of showing autistic perspectives--which are sorely lacking in the main text? If so, it feels blatantly tokenistic and patronizing. Acknowledging autistic people as agents demands taking seriously our perspectives throughout an analysis such as this--not boxing off a few biographies between chapters.

Barnbaum, it seems to me, isn't writing about the ethics of autism. She's writing about the ethics of autism as perceived by a variety of non-autistic "experts." Which is an entirely different issue--and a purely theoretical one, at that.

I'd also note that I'm not entirely comfortable with the tendency to use (perceptions of) autism to discuss wider ethical questions. Disability is not your analogy.

Serious discussions of autism and ethics cannot happen in forums where the terms are set--by non-autistic people--in an inherently dehumanizing way.

I may or may not continue to read the book and blog about my thoughts on it. I won't make any promises on that one--my time for discretionary reading is limited, and I'm not sure I have the fortitude to continue with this one.

Mythbusters: Gary McKinnon Edition

In response to various comments I've seen floating around the autistic community, I'd like to post about Gary McKinnon for only the second time in this blog's history. I myself was not very well-informed about the case until today, so I thought I would post some of what I've learned here. (The link is to McKinnon's Wikipedia entry, which I think is actually fairly free of bias.)

Myth: McKinnon didn't understand he was committing a crime (due to impairments in understanding social rules).

Fact: McKinnon did understand the criminality of his actions, as evidenced through his repeated "notes" (and threats) to U.S. military officials. Consider these words, which McKinnon has admitted to leaving:

"US foreign policy is akin to government-sponsored terrorism these days? It was not a mistake that there was a huge security stand-down on September 11 last year...I am SOLO. I will continue to disrupt at the highest levels." [emphasis mine]

While his statements are a bit difficult to unravel due to McKinnon's conspiracy theory about September 11, I think it's pretty clear that these are not the words of a person who is unaware of the criminality of his actions. He wanted to "disrupt."

Myth: He may have been experiencing an irresistible, OCD-like compulsion in hacking. Sometimes autistic people feel that way about their special interests.

Fact: McKinnon's actions were performed over a number of days. He also resumed hacking just a few weeks after September 11. (Yet more evidence that he knew what he was doing. The timing is unlikely to be a coincidence.) These "compulsions" were spread out over time, thereby making his actions repeated crimes (at least 97 times). If this were just a one-time transgression, I would be more sympathetic. But McKinnon had ample time to consider the ramifications of his actions and redirect his energies towards legal activities. He chose not to.

Myth: A psychiatrist has said that McKinnon will kill himself if extradited. Therefore, he should not be extradited.

Fact: The second statement does not necessarily follow logically from the first. There are other ways to prevent suicide, regardless of what potentially biased psychiatrists have to say about it. McKinnon's supporters too often pose a false choice: Extradite him, and he'll commit suicide, or don't extradite him. There are other choices. I am in favor of providing McKinnon with reasonable accommodations in his incarceration. Avoiding extradition altogether isn't an accommodation, but a "get-out-of-jail-free" card.

Myth: McKinnon was on U.K. soil when he committed the crime, so he shouldn't be tried in the U.S.

Fact: While it is technically true that McKinnon was physically present in the U.K., the crime was actually committed via the Internet, which knows no national boundaries. This argument is a distraction which obscures the real issues involved in Internet crime. For goodness' sake, the crime was against the U.S. Department of Defense. How is that not an offense against the U.S. government? Certainly technology has led to a number of ambiguities in terms of criminal jurisdiction. Numerous transnational treaties have established laws for dealing with precisely this kind of situation. This brings me to the next point...

Myth: It's outrageous that a U.K. citizen is being subjected to this kind of treatment. It's all the fault of evil Americans. (paraphrased)

Fact: The democratically-elected British government agreed to these treaties. They were not simply imposed on the U.K. by the Big Bad U.S.

I'm an American citizen who is highly critical of a number of my government's policies and practices. I'm rarely (never) accused of being a nationalist of any kind. But oftentimes in reading commentary on the McKinnon case, I'm struck by the belligerent anti-Americanism. Reading some of these comments, one would think that the rest of the world (including Great Britain) is a land of sunshine, roses, and total liberty--except when infringed upon by the terrible Americans, of course. And to this I have just two words, and they are "bull" and "shit." Non-American countries have done plenty to contribute to human misery and loss of liberty. Let's stop making the U.S. the only villain, and idealizing other nations to ridiculous extremes.

And let's stop making this case a primary focus of autism advocacy. There are many autistic adults who are some combination of homeless, unemployed, or institutionalized. But apparently, the only autistic adults worthy of extended advocacy campaigns are those who have committed international crimes.

More on Baron-Cohen

A few bloggers have interesting responses to my post about the incoherency Simon Baron-Cohen's proposed diagnostic criteria.

Amanda Forest Vivan at A Deeper Country goes through the criteria and points out several problems, including the fact that Baron-Cohen's prototype of an Asperger's autistic just sounds like an asshole.

My favorite excerpt: "I don’t understand why SBC even claims to be studying AS at all because he’s just studying 'people with bad social skills.' That’s all he thinks it is."

Quoted for truth. The experience of being on the spectrum involves much more than social cluelessness, yet Baron-Cohen insists on a reductive explanation of autism which brings everything back to his silly theories about "mindblindness" and "lack of empathy." At some points when I read his work, I rather get the impression that he thinks autistic people are sociopaths. For instance, he seems to be under the impression that the typical autistic person isn't bothered by seeing an animal in pain. This fills me with rage I can only begin to describe in words.

Astrid further discusses Baron-Cohen's nonsensical views on fiction.

Key quote: "Imagination, after all, only counts insofar as Baron-Cohen can imagine it."