Disability Studies Quarterly: A Must Read

The most recent volume of Disability Studies Quarterly is now out, and it's a special issue devoted to neurodiversity. At first glance it seems as though at least half of the contributors are themselves on the spectrum.

The contrast between this and the medicalized literature on autism could not be clearer.

Unlike most other academic journals, DSQ is fully available online for people to read, so I encourage everyone to do so.

Am now off to go indulge in the disability studies and neurodiversity awesomeness. I am very happy and stimmy right now.

Philly.com Perpetuates Stereotypes

Because apparently I can't get away from this topic: Christine Ma at Philly.com reviews Jodi Picoult's upcoming release House Rules. In this review, Ma perpetuates various stereotypes and misinformation about Asperger's autistics in particular--though ultimately harmful to all autistic people, in my opinion. I urge readers to read the review and politely e-mail Ms. Na expressing your concerns, if indeed you share them.

Most galling to me:

Picoult's portrait of Jacob is successful - but is it really likely that a person with Asperger's could be articulate enough to narrate his own world? Or is Jacob just a way to move the story along? People with Asperger's aren't supposed to be able to empathize with others, but Jacob sometimes seems to understand how his mother or brother or other characters feel.

"Is it really likely that a person with Asperger's could be articulate enough to narrate his [or her] own world?"

Looking over at the massive amounts of autistic biographies I have in multiple locations around my apartment, and the many autistic-written blogs I write daily, the answer seems to be an unqualified yes. Nor are those of us who are labeled "Asperger's" or "high-functioning" the only autistic people capable of expressing ourselves "articulately" (whatever that means) in writing. Nor are autistic people inapable of "narrating" in our own heads, regardless of our writing or speaking abilities or any other arbitrary category used to divide us.

Ms. Ma says the book educated her about autism--but clearly this "education" was rather incomplete.

Autistic Relationships: Some Thoughts

Inspired by codeman38 and sarahgirl's posts about their relationships, in honor of Disability Blog Carnival #63 Relationships, I thought I would share some thoughts about my own autistic relationship.

[post contains possible spoilers for Adam and My Name is Khan]

My partner and I are both diagnosed autistics. We are a couple of two people who are supposedly incapable of having relationships. We are people who, according to the Maxine Astons of the world, can only bring misery to anyone we're partnered with.

There are no books or forums for people like us. Virtually all of the existing literature on autistics and romantic relationships assumes a neurotypical woman and a (very stereotyped) Asperger's autistic man. That is not us.

We don't do things the "normal" way. We met online, at a certain autism website. We had some difficulties in knowing how to touch each other at first, though we now do it all the time. Our idea of a great date often involves going to bookstores. We have silly repeated phrases, usually involving our cat, that we repeat to each other many times a day. We stim together.

And yes, there are difficulties. We are both disabled and trying to live semi-independently together. Sometimes this is very, very hard.

But we have made it work for three and a half years and counting--two "abnormal" people who are supposed to be incapable of real relationships. Neither of us has ever had a romantic relationship before.

Movies like Adam and My Name is Khan, from what I've heard, promote Aston-like views of autistic relationships: Ultra-neurotypical woman just can't handle being with an autistic man. And who can blame her? Autistic people are just so difficult. (Our difficulties, apparently, aren't worth noting.) Films like Mozart and the Whale are the rare exception.

(I should note here that I haven't actually seen either Adam or My Name is Khan, though I plan to. I am basing my summations off of other people's commentaries. And by "ultra-neurotypical," I mean someone who is portrayed as super-socially acceptable, capable of being empathetic in socially-recognized ways, etc. Usually this character is a woman.)

I think the Aston view is wrong. There are numerous examples of successful non-autistic/autistic relationships. But that's not really the subject of this post.

Because many people who are atypically-brained find love and companionship among our fellow neuro-atypical people. And I don't necessarily just mean autistic/autistic relationships. I'm talking about any number of possible relationships between autistics, people with ADHD, people with learning disabilities, people with Bipolar or other mental illnesses. In my experiences--not only in my relationship, but in friendships--these relationships with other neuro-atypical people are often invaluable. Not only because we may share particular perceptions of the world, but because we also have the shared experience of being marginalized due to one's neurology.

I'm not saying that every neuro-atypical person should seek a relationship with another neuro-atypical person. What I am saying is that these relationships are both common and valuable. We neuro-atypical people do not need to have a relationship with a "normal" person to make us normal by force or proxy. We can make our own kind of normal.

I Don't Want to Be Like You

And by "you," I mean all of the people who share my diagnosis and are now up in arms over the proposed changes to the DSM.

Other people have already said what's wrong with the reactions of many "aspies" to the proposed changes.

The ableism on display from "aspies" who don't want to have the same diagnosis as Those People is rank, but sadly predictable.

Well, I may have an Asperger's diagnosis, but I don't want to be like Those Bigoted People. Alas, some of them are being touted as The Voice of Asperger's--indeed, some of them are among the famous "aspies" in our community.

Funny how so many are fine with stigma and prejudice when it's directed at Those Other People, but then create an uproar when they are at risk of becoming one of Those People. And I'm not free of blame myself. I confess to having held many of the same preconceptions when I was first diagnosed. I'm not proud of it.

And while I have since recognized the bigotry inherent in my previously-held views, I am not always able to express my anti-bigotry views as well as I would like. I really admire abfh and others who have conversations (in person!) with people who do not hold this viewpoint--or, indeed, who are actively hostile to it. But I don't know how to hold these kinds of conversations myself.

Here's an example: I recently talked to someone about my being on the spectrum. My relationship with this person is Very Important, and will likely to continue to be so in the future. Here's how it went:

Person X: [standard lines about how I am Completely Different From Those Low-Functioning People--and really, we shouldn't be in the same category]
Me: [some stammering] Well, I don't want to say, "I don't want to be like those people." I think that's discriminatory.
Person X: Yeah [in unusual inflection], but it's completely different.
Me: Well, maybe, but.... [assorted stammering]

I wish I could have better expressed my actual views in this conversation--and in several others I've had with other people. But I don't quite know how to verbally express these things. I know it's a privilege that I have, as someone who typically comes across as very "high-functioning," to dodge these kinds of conversations. And I want to stop hiding behind that privilege in these kinds of (admittedly difficult) situations.

Advice, readers?

Why I Like the Olympics

Because of all the beautiful, spinning people. Wonderful visuals.

I don't think anyone this year will produce something as wonderful as this, however:

Airport Security Rants, Continued

More on how airport security is crappy for disabled people:

Via FWD/Forward, I found this story about one woman's recent experiences with full body scanners. Lesson learned? If you have an atypical body and medical implants, you can expect for your body to be violated when you go through security. Also, TSA agents are entitled to know someone's medical history whenever they encounter something unfamiliar.

In the fictional realm, the new Bollywood movie "My Name is Khan" revolves around an Indian Muslim man, Khan (Shah Rukh Khan), who is an Asperger's s autistic and finds himself arrested at an airport for suspicious behavior. Certainly it does not require much imagination to imagine this happening in the real post-9/11 world. Racial profiling plus the identification of typical autistic behaviors with "suspicious behaviors" makes it so that these kinds of situations are just waiting to happen--and perhaps already have. In fact, the movie was apparently based off of an incident of racial profiling which Khan the actor--who is presumably neurotypical--experienced. I haven't yet seen the movie myself, but I hope to. I'm particularly interested because this is one of the few movies centered around an autistic character who is not white. Should be interesting viewing, and hopefully Bollywood will prove better than Hollywood in avoiding stereotypes.

The fight against "terrorism" has, in certain arenas, violated basic human rights. It's that simple.

Sarah Palin is No Ally of Mine

As many of you have probably heard, Sarah Palin is calling for Rahm Emanuel's resignation because of his pejorative use of the r-word. While I agree with Palin that Emanuel's comments were ableist and inexcusable, I couldn't help but be suspicious of her motives.

Now, it seems, these suspicions have been confirmed. Known hate monger Rush Limbaugh, in response to Emanuel's ableist, anti-liberal remarks, decided to agree with Emanuel for once, and added remarks which were even more ableist. (Go to the link to read the comments; I do not wish to repeat them here.)

Palin's response to this was to defend Limbaugh. Because for her, ableism is only worth calling out when liberals and Democrats do it.

Why is this hypocritical, ultra-partisan politician being advanced as an advocate to disability rights? Sarah Palin may have a child with a disability, and yes, she got it right with regards to Emanuel's ableism. (Though calling for his resignation was a little much, in my opinion.) But she's made it pretty clear that her primary loyalties lie with a particular brand of ultra-conservatism and her own political advancement. Her occasional acknowledgment of disability issues is just a way for her to get her name in the news and promote that agenda.

Palin is no disability rights advocate or ally.

The people who deserve to be recognized for their activism with regards to the Emanuel issue are Julie Petty and Ricardo Thornton, two self-advocates who met with Emanuel and urged him to take the pledge to remove the r-word from his vocabulary. Unfortunately, Ms. Petty and Mr. Thornton have too often been ignored in media coverage of these events. Palin, meanwhile, has successfully placed herself at the center of the controversy.

When will self-advocates be recognized to the same extent as hypocritical right-wing politicians?

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.