Wednesday, November 26, 2014

#CultofCompliance - Bessemer, AL - Intersection of race and disability.

Donald Ray “Hambone” Wilson, an African-American man has schizophrenia. This fact was known to the police. He was shot in the chest.

In this video, he is surrounded by police as he holds a steak knife. He is clearly in mental health crisis and as the police engage into close proximity, they become in danger of being stabbed. Until the police got so close, no one was in danger.

At one point he makes a little fake lunge, then stands still. He is then shot.

As I have written about before (Milton Hall in Detroit, Kajieme Powell in St. Louis), a psychiatrically disabled person with a knife presents intense complications for the police. Shooting the individual, however, has to be an absolutely last-ditch response.

The first response should be to keep distance and employ patience.

The second response should be to use non-lethal force: takedowns, tasers, beanbag rounds. To me, these are a DISTANT second. To a law enforcement professional whose opinion I respect, they are a closer second. Either way, they come LONG before shooting someone in the chest.

I see these stories every week, sometimes multiple times a week. They frequently, though not exclusively, involve people of color, and I do not want to erase that. These are stories about the deadly (or near deadly in this case) intersections of race and disability. They need to be put together so that the patterns emerge, rather than the individual cases standing out as aberrations.

That's my plan for the next 6 months. Put these stories together. More to come soon.


Tuesday, November 25, 2014

#FergusonSyllabus

I have a new piece up at The Chronicle of Higher Education on how academics NOT in critical race theory, African-American studies, modern US history, etc. might teach about Ferguson. My attitude is that if we apply ourselves to the sources, in this case the Grand Jury testimony, we'll see a lot we can share.
Now, in the wake of Ferguson, we have some work to do. On Twitter, academics have been organizing classroom topics under the hashtag #FergusonSyllabus. Here’s my suggestion to add to the list. The entire testimony of Darren Wilson is available online, along with the rest of the grand-jury evidence. Those are our primary sources. Whatever your disciplinary lens is, you’ll find something worth saying once you engage with those documents.
I offer a few examples in the piece, then suggest we all go ad fontes. To the sources!

UPDATE: Over at Slate, Katy Waldman expands on similar themes.

Of course, Wilson’s characterization of Brown doesn’t really fall into this tradition of literal, deranged belief. Instead it emerges, if unwittingly, from a long history of equating blackness with devilry. Literature is rife with examples: In Othello, the Moorish antihero is relentlessly compared to a demon. (When he swears that Desdemona has “gone to burning hell” for her unfaithfulness, another character rages: “O, more the angel she/ And you the blacker devil!”) Rudyard Kipling’s odious poem “La Nuit Blanche” has the narrator recount a ghastly dream in which “a huge black Devil City”—possibly representing Africa—“poured its peoples on my path.” Nor is contemporary culture immune from the association: In 2013, the History Channel infuriated liberal viewers for airing a miniseries, The Bible, that cast Satan as a Barack Obama lookalike.

Monday, November 24, 2014

No Voice for Dead Children

Content Note: Child Murder.
 
I wrote a piece for CNN about the murder of children with disabilities.

I wrote it because of the media discourse I saw surrounding the death of London McCabe. I wrote it because that framing was not unusual when this kind of murder happens. I wrote it to provide a tool, a pre-made critique, ready to go when another horror broke.

Here's that next horror.

A mother in England smothered her three disabled children, killing them. The reporting has been heavily focused on the pressures she was under. Here are a few links representative of the larger reporting.

The Telegraph - "The unimaginable sorrow of Tania and Gary Clarence."

The Daily Mail -  "Court papers reveal 'unbearable pressure' put on Tania Clarence" and "Heartbroken banker stands by wife who suffocated their three severely disabled children after being 'tipped over the edge by social workers and doctors'"

On BBC.com, Mik Scarlet (in a piece critical of the media discourse), notes the frequency of the words, "mercy killing." Scarlet also quotes two people with Spinal Muscluar Distrophy 2, the condition that the three children had:
Katherine Araniello, who has type 2 spinal muscular atrophy (SMA), the same condition as the Clarence children that died, stated on her Facebook page: "This mother acknowledged and understood what she had done and appears to have planned to kill her children... so my overall feelings on this story are the terrifying moments those poor children had. I can relate to zero physical movement, not being able to wave my arms in protest, let out a scream, defend myself."

Mark Womersley, who also has SMA type 2, posted a video on Youtube in which he expresses how deeply the case has affected him. He raises his worries about the media portraying the condition as an "infant killer", even though he has reached the age of 47. He believes the charge of manslaughter did not fit the facts of the case as they came out during the trial. He also raises his fears over the use of the term "mercy killing" during the trial and what it might say for disabled people in the future.
It is not my intention to demonize Tania Clarence or demand that her husband reject her. But the vast majority of the coverage is about Tania. I ask myself, I would like you to ask yourself, "where did the victims go in this narrative?" Who will speak about and for them?

The three children transform in these stories into abstract subjects, the subjects of state intervention (which seems to have been poor indeed in this case), the subjects of parental stress, inert objects to be smothered beneath a pillow, silenced forever, and then written out of the story. It's Tania's story, it's about her, her pressures, her (genuine) mental health issues, her marriage, her husband's reaction, the court's mercy in charging only with manslaughter, it's all about her.

And it's not that her story doesn't matter.

It's that her children deserve their story too, and they deserve it first, and loudest.

This is going to happen again. Probably soon. Be ready to demand that we tell the victims' story.

Sunday, November 23, 2014

Weekly Roundup

It's been quite a week. On Thursday, I woke up and could find neither clip nor transcript of Daniel Handler's racist joke at the National Book Awards. So I made one and offered a few comments. I said:
For a powerful white author to make a watermelon joke when handing out an award to a black author, the message is - no matter what you write, no matter what you do, no matter what you accomplish, you will always be a BLACK author, not just an author.
Handler has since apologized and put a lot of money where is mouth is, supporting We Need Diverse Books. And we do need them. Please donate if you can.

The piece went viral, at least in terms of this blog's history, with tens of thousands of views.  It's been cited on Salon, The Mary Sue (one of my favorite sites!), The GuardianLee and Low publisher's blog, Raw Story, Smart Bitches Trashy Books, Melville House Publisher's blog. The SF Chronicle referred to me as "many on social media." That's Dr. Many on Social Media to you!

Anyway, it's been lively. Thank you all for reading and sharing.

But what I really want you to read are these two guest posts.
I don't do many guest posts, so believe these are worth your time. Please share them if you will.

Other posts:

I wrote my first piece for Reproductive Health Reality Check with a related blog post, as I continue to try and develop a better pro-choice, pro-information, anti-eugenic rhetoric. I'm hopeful that RHRC will be a good space for that project.

I wrote a long blog about definitions of autism and the pushback against Seinfeld. I feel it comes from a poor understanding of disability, one with dangerous consequences.

I wrote quick pieces about questions for the NEH Chairman and the death of Tanesha Anderson - Another Disabled Person killed by police.

As always, thanks for reading! See you next week.

What do you do when someone tells you they are thinking about suicide?

When someone brings up thoughts of suicide to you, you have already done something right. 

This is a repost with permission. Amy McNally is a musician in Madison and a friend. Please share this. There is someone in your social circle who needs to read this. 

Originally posted by sweetmusic_27 at International Survivors of Suicide Loss Day 2014
November 22 is International Survivors of Suicide Loss Day.


Four years ago, my mother committed suicide. I still struggle coming to terms not only with her death, but with my family's wider history of suicide. My maternal grandfather and great-uncle died by suicide, my sister made an attempt, and I have struggled with depression and suicidal thoughts since puberty.

When I talk about these things, people shy away. It's a frightening subject, but if we want to help people who are suicidal, we need to understand what suicide really means, how it works, and how to respond to people contemplating it. Remember, talking about suicide does not cause someone to be suicidal. If you're worried about someone, it is safe to bring up the topic of suicide.

Suicide is the act of taking one's own life, and suicidality - the tendency toward or risk of suicide - is an illness like any other. Some people have this sickness temporarily, others fight it their whole lives. In my family, it's hereditary. All too often, it's fatal. It takes over your mind and body and you die from it. When that happens, as a society, we tend not to talk about it too much. It’s a very quiet killer, rendered quieter by stigma, taboo, awkwardness, and misconceptions.

Suicide is not selfish. Imagine that your thoughts and emotions make up a house. My mother's mental house faded around the edges. Room by room, the space available to her shrank until she was left a hallway, trapped in a narrow place. It's not that she was thinking of herself; it's that she couldn't think of anyone, anything.

It’s nobody’s fault when this medical condition takes hold. As many as one in six people become seriously suicidal at some point in their lives. While it is not directly caused by depression, anxiety, drug use, or other risk factors, about 90% of suicidal people have mental issues that involve or worsen seriously suicidal thoughts. These issues can be treated.

If someone brings up the topic of suicide with you, don't panic. Don’t lecture, and don’t make demands. Start by listening. Someone reaching out to you is a very good sign. First of all, it means they trust you. Second, if an individual is sharing these thoughts with you, there is something stopping or delaying them from completing suicide. It is safe to ask, "What's stopping you, and how can we focus on that?"

Here are some other “do’s” and “don’ts” for such a conversation. We all need to be ready to support our friends and family.

Do try to have the conversation in private. Don't promise to keep the contents of the conversation private, though. It's important that you be willing to get help if someone you know is in crisis.

Do try to say something, even if it's "wow, I'm sorry," or "well, crap." You don’t have to instantly become a perfect therapist. A friend of mine reached out to some of her friends, and they reacted with silence. "You could have heard a pin drop," she told me. "Nobody said a thing." It made her feel distanced, alone.

If the person you're talking to mentions a certain means of committing suicide, it's safe to bring up ways to remove or limit that means. "Do you want me to keep your gun for a while? Do you keep ammo in the house?" "When you say you're thinking about swallowing pills, are they pills you have? Can you get someone to dose out a week at a time instead of having the whole bottle around?" "You mentioned slitting your wrists. Is looking at knives or razors hard for you? I can come over and help you get those things out of the house for a while. Want to go shopping for an electric shaver together?" Bringing this up is not harmful and will not give anyone ideas. Don't press for action, just let them know there are options.

Later, check back in. Be ready for things not to suddenly be better. The mental issues surrounding suicidality don't go away quickly. If you can, try to communicate that it's okay to still be struggling.

There are many resources for those who are suicidal or talking to people who are considering suicide. America's Suicide Prevention Lifeline is available 24/7 at 1-800-273-TALK (8255) and anyone in crisis can use their online chat to talk to a counselor. Similarly, IMAlive is an online chat-based Hopeline staffed by trained volunteers, and the Kristin Brooks Hope Center's Hopeline phone number is 1-800-442-HOPE (4673).

If you're suicidal, there are people who can help. If you are not, the odds are that somebody in your life will be or has been before, and you can still help by being willing to educate yourself and others, and being willing to say the word "suicide."

When someone brings up thoughts of suicide to you, you have already done something right. You’re the one they trust, you’re the one who feels safe. "Suicide" is a scary word, but talking about it doesn't kill you, and being ready to listen might help someone live.

Every time you share this post or other information on suicide, you help to fight the stigma, break the taboo, and dispel the myths. Feel free to link back to this. Feel free to comment here with other links and resources and stories. Feel free to talk to me about suicide.

Friday, November 21, 2014

The Human Scale: What we miss when we compare disasters like Ebola and the Black Death

This is a guest post written by Ellen Arnold, PhD, 
Assistant Professor of History at Ohio Wesleyan University. 
 
"Perhaps the biggest thing missing from comparisons between Ebola and the bubonic plague, or in fact between any of these large scale tales of epidemic and pandemic disaster, is the human scale."

I am an environmental and cultural historian—I work on the Middle Ages, and one of the classes that I teach on a regular basis is a class on the Black Death that is, at its core, a course in comparative disease and disaster history. In 2009 I started the class with discussions of Swine Flu. In 2013 we began not with the Middle Ages, but with parts of Susan Sontag’s “AIDS and its Metaphors.” We read about cholera, and the flu pandemic, HIV/AIDS and cancer. I ask students to make links across time and across cultures, to think about the ways that humans interact with ecosystems of disease and the ways that human society constructs ideas about illness, how groups and individuals respond to disease, and the role of culture in human/disease interactions. And so I have been following coverage of the recent, devastating Ebola outbreak not only as a concerned citizen, but also as a teacher interested in the ways that people imagine and interpret disease.

The ways that we as moderns understand, interpret, and talk about disease have long and complex history. The history of the way that we frame and interact with diseases has taught us important lessons about both human health and human cultures. And modern disease studies have helped us learn a LOT more about the Black Death. Recent DNA analysis of both human remains and microbes and cemetery excavations have rekindled academic and popular interest in the medieval plague, and have added a lot of nuance to many public discussions of the deadly disease. And so, as I read Mark Perry’s essay using the panic over Ebola to direct readers to that most famous of pandemics, the Black Death, I was hoping for, well, I don’t know.

The article rehashes all the old standard stories about the plague— it was “caused” by Mongol armies using biological warfare; it swept uncontrollably through Europe, was composed of three diseases (here he is wrong), it devastated the economy, led to persecutions and hatred, and, (and here’s the core) killed an unimaginably large number of people. (I could write a whole essay on how misguided and oversimplified these main, predictable stories are, but I won’t.) Instead, I’d like to focus on the ways that we are missing real opportunities to do meaningful historical comparisons when we use death tolls as our primary index for comparison.

National Geographic
The main comparative point that Perry is making is one of death toll—a statistical comparison. Ebola, he argues, “is not nearly as deadly as [the disease] which, well, plagued the world in the 14th century.” He is not alone in this. Despite some more nuanced attempts to compare specific public health policies (see Rebecca Rideal’s take on UK border control efforts and this NPR piece on some recent research), comparisons between the plague and other diseases fixate on the death toll. Ty Burr, writing for the Boston Globe, amidst an interesting essay on cultural expectations of disease, writes: “Some perspective: The Centers for Disease Control estimates that influenza kills 3,300 to 49,000 people in the United States per year; statistics are much debated, but the point is that they’re more. Bubonic plague — the Black Death of the Middle Ages — reached London around Nov. 1, 1348; by February, 200 people were dying per day. The 1918 influenza epidemic that killed 30 to 50 million worldwide landed in Boston at the end of August; by the end of October, 195,000 Americans had died.” A National Geographic article presents this graphically, with lives lost turned into giant lotto-balls (blood-red to signify blood and danger).

Shocking, yes—but helpful? Perhaps the biggest thing missing from comparisons between Ebola and the bubonic plague, or in fact between any of these large scale tales of epidemic and pandemic disaster, is the human scale.

Today we routinely hear disasters quantified and measured against one another. Natural disasters are newsworthy when they are “the worst” or “the highest,” droughts when they are “the most extensive.” Material damages are quantified, to determine if disasters qualify as the “most expensive” (or problematically, expensive enough to merit aid), and human loss of life becomes part of the tally of scale. Given our new record-keeping abilities to assess and compare both scale and impact, and also the reality of increasingly global scales of environmental disasters in the post-Industrial (or anthropocene) world, it is unsurprising that generally only the “worst” medieval and pre-modern disasters are commonly discussed: Pompeii, the Black Death, the diseases of the Columbian exchange, etc.. All disasters, no matter their scale, affect individuals and communities, and leave their traces in communities, families, ecosystems, and human memory.

Source: http://www.andrecarrilho.com/
In August, André Carrilho drew a striking illustration (discussed here and reproduced left) of media response to the Ebola outbreak. What makes this image so powerful, besides the painfully brutal way it throws our racism at us, is the de-individualization of all the sick people. These people are identical (save color) in their identities as suffering bodies. Their personas eclipsed by their identities as victims. They are statistics.

Here is where the premodern can help—can open up conversations about not just mass mortality, but about individual response. Though so many modern accounts of the Black Death focus on gruesome deaths, medieval writers remind us that past the fear and the pain, there was another dimension to the plague—it created absences.

In the wake of the plague, Petrarch wrote an agonized letter:
“Where are our dear friends now? Where are the beloved faces? Where are the affectionate words, the relaxed and enjoyable conversations? What lightning bold devoured them? What earthquake toppled them? What tempest drowned them? What abyss swallowed them? There was a crowed of us, now we are almost alone. We should make new friends—but how, when the human race is almost wiped out; and why, when it looks to me as if the end of the world is at hand? Why pretend? … Look, even as we speak we too are slipping away, vanishing like shadows.” (Petrarch, letter from Parma, tran. In Horrox, The Black Death, 248-249).
Each dot on a map of Ebola victims was a whole person, with a family and a faith and friends—each person killed in this outbreak leaves giant holes in their family, their local economy, and their social networks. Though it is tempting to look to the medieval world and see in it a “there but for the grace of God and penicillin” lesson, it is much more fruitful to see in the voices of long ago reminders that all lives matter, that diseases on all kinds of global scales are about the sickness, susceptibility, salvation, and (one hopes) survival of individuals.

Thursday, November 20, 2014

Daniel Handler, Racist Jokes, and the Disclaimer

A few months ago I wrote a CNN piece about the use of disclaimers as a way to get around offensive humor.

My piece and subsequent blog was specifically on the context of  Down syndrome jokes and disability humor. I believed, though, that there's a broader language issue here. We say something terrible, we bracket with disclaimers, and we get away with propagating stereotypes.

Last night Jacqueline Woodson, who is African-American, won the National Book Award for Young People's Literature for the work, Brown Girl Dreaming. She thanked people for changing the world.


Daniel Handler, better known as Lemony Snicket, then made a joke about watermelon.


Here's the video clip. And here's my transcript:
Woodson: Thank you for changing the world.

[music]

Handler: I told you! I told Jackie she was going to win. And I said that if she won, I would tell all of you something I learned this summer, which is that Jackie Woodson is allergic to watermelon. Just let that sink in your mind.

And I said you have to put that in a book. And she said, you put that in a book.

And I said I am only writing a book about a black girl who is allergic to watermelon if I get a blurb from you, Cornell West, Toni Morisson, and Barack Obama saying, "this guy's ok! This guy's fine!"

Alright

[cackle]

Alright, we'll talk about it later.
For Handler, the disclaimer and humor, the wink that he knows he's on dangerous ground, functions to excuse a joke linking to a long racist history of associating black people with watermelon. Handler is a smart guy (I went to college with him, but never really knew him), he knows this history, and he thinks that because of his disclaimer, this is funny.

It's not. Woodson can make that joke about herself. But for a powerful white author to make a watermelon joke when handing out an award to a black author, the message is - no matter what you write, no matter what you do, no matter what you accomplish, you will always be a BLACK author, not just an author.

That's not Handler's intention here, but that's the effect.

And it needs to be called out. It especially needs to be called out by all those other powerful white male authors that populate the internet, have tens or hundreds of thousands (or millions, for Gaiman, who was doing a book giveaway with Handler earlier in the day) of followers on Twitter.

And then Handler can apologize, say that it wasn't his intention to be offensive (which is what they always say) and everyone will just move on. But the apology is necessary. It's necessary to make a loud, public, statement that this type of discourse is unacceptable.

UPDATE - A Few tweets, including Handler's apology.

This was written by noted speculative fiction author Saladin Ahmed before the apology. But like me, he knew it was coming. And I'm glad it was coming. 

Update 11/21/14: Handler has reportedly given $10,000 to We Need Diverse Books and promised to match donations up to $100,000. This is a good mea culpa, as such things go, and I'm glad to see it.



Questions for the NEH Chairman

Today, sometime from 10-12 (I assume the second hour), the Chairman of the NEH is going to be on air with Diane Rehm. You can listen here.

You can call in.

The Chairman does not talk to me, nor do I expect him to. I'm a nobody. The Director of Communications at the NEH does talk to me, or did, anyway, until yesterday (more on that in a moment). There have hundreds and hundreds of you supporting me in my work on the NEH.

Now I need your support. I need you to call the show. I can't. I'm acting as a journalist here. If I call in, I am trying to get an ambush interview, and that's not ethical. But you, as academics and citizens and people concerned about the NEH can. Please call. Flood the line. Be polite.

Here's why the NEH stopped talking to me.
Dear Judy [NEH Communications Director Judy avermann]

Sorry, another question. I know these are small things, but I like to get the details right.

On August 26th, Jeff Thomas sent an email to Larry Myers and Adam Wolfson. Thomas asked them to do some "back-of-the-envelope tally of all the 'extra' funds we agreed to provide at OMB Level 2?"

Given my FOIA request, the natural conclusion is that Thomas is discussing money saved by canceling the overseas seminar program.  Otherwise the email would be non-germane. Would someone like to confirm that?

Also, to my knowledge the following numbers have not been made public.

1. How much money will be saved by eliminating overseas seminars.
2. Where that money will go.
3. Whether the total funds spent on summer seminars and institutes will be reduced or maintained at the same level, just re-focused domestically.

I'd obviously like those numbers, but I'd be content to say that the NEH hasn't made them public.

Thanks,
David
Judy replied:
  Dear David,
 We have done our best to explain why we made this decision, and have sent you all the files that we have on it.   I think we will just have to leave it at that. 
Judy
Here are some other things I know.

Bro Adams took over on July 22 and told everyone to cut their budgets.

By the end of August, the Education Division had decided to cut overseas summer programs.

In my FOIA request, THERE IS NO BUDGET DOCUMENT, not even a redacted one. I am genuinely unsure whether they even know how much money they are going to save, and I suspect the number is basically 0. The foreign seminars are, though, usually 5 weeks, which is more expensive, so they may do more shorter seminars and save a few tens of thousands of dollars that way.

At any rate, call in and ask Bro Adams about the seminars. Ask him what programs could have MORE impact than sending high school teachers, especially in social studies, history, and language, to learn and work abroad, to build international contacts. Ask him something.

Thanks.

Wednesday, November 19, 2014

Definitions of Autism and Jerry Seinfeld

On CNN - in "London McCabe's Death Matters" - I argued that the way we talk about autism, our ideas about the condition, our ideas about disability more generally, shape the worldview that can lead to child murder. The correlation in these cases is not lack of services or money, but ideas about disability. Correlation is not causality and any individual case may have all kinds of factors, including serious mental conditions, but the correlation is there. And so I argue we need to write victim-centered narratives.

In this blog post, I want to think about how hardship narratives in the autistic parenting community perpetrate what I think are dangerous ideas about autism because they demand that autism = struggle. To do that, I'm going to look at responses to Jerry Seinfeld's interview in which he came out as possibly on the autistic spectrum.

Response to Seinfeld was varied. From the welcomes (but stop supporting Autism Speaks) to get out! It's these latter that interest me.

First - Here's a discussion about the removal of Aspergers Syndrome as a separate diagnosis, instead redefining Autism as a broad disorder with an expanded spectrum. That's really the subtext for a lot of these pieces.

The general dynamic is that autistic people are welcoming Seinfeld, while parents who are struggling mightily (and I do not deny the veracity of those struggles) want to exclude not only Seinfeld, but by extension anyone with autism who is doing pretty well.

Here's an example from "Age of Autism," an anti-vaccination group linked directly to the kind of "cure-based" discourse I talked about in my CNN piece. The author, a struggling parent, writes: "Screw You Jerry Seinfeld." The complaint is that because Seinfeld is so rich and successful, his embrace of the autism label somehow diminishes the struggles that the author is having.
And you can watch Jerry struggle with basic social engagement and making friends on his new show where he socially engages his many friends, who happen to be the most famous, popular and clever people in the world, on his new show, “I Can't Look You In The Eye or Answer Wh Questions Without Prompting.” No... that's not it. It's called “Comedians in Cars Getting Coffee.” A follow-up to the most famous comedy show of the late 20th century in which Jerry spent many years making witty banter that was frequently entered into the English lexicon. Not that there's anything wrong with that.
That reminds me... do you remember that hilarious episode where Jerry walked around his apartment on his tiptoes while flapping, wiped his poop on the wall, got lost for three days in Manhattan, was tortured by bullies and then had a seizure? Me neither.
Because again, Jerry apparently has the kind of autism that is not dysfunctional, even though autism by definition is dysfunctional. He has a non-impairing impairment. Because autism, it’s just a different way of being– even though, again, by definition, being listed in the Diagnostic and Statistical Manual of Mental DISORDERS means that it is a disorder... which means that it is disordering, dysfunctional and impairing.
 In the Down syndrome community, which is of course chromosomally based in terms of diagnosis so there's less wiggle room, there's a general tendency to cheer success. My child can do many things, but I know many people with Down syndrome with MUCH better speech and hence greater degrees of integration. I would never want to exclude such people from my son's community. But here, from Age of Autism, we have a voice trying to separate the successful from the struggling.

And it's not just the crank groups like Age of Autism. In Salon, Columbia University creative-writing professor Marie Myung-Ok Lee wrote essentially the same piece, only with clearer prose and less ranting.
Seinfeld said he hopes his announcement will help diminish the stigma of autism, an unequivocally laudable intention. Retroactively self-diagnosed adults or high-functioning autistics like Temple Grandin indeed may be living proof that one can overcome huge obstacles and live with and even flourish despite autism. Every day, dead people, too — Mozart, Newton, Einstein — are also retroactively diagnosed with autism.
What I fear is that these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable. 
To veer to the other end of the spectrum, the sporadic — but steady — news of overwhelmed parents killing their own children warns of a crisis building in our own homes. Many of these cases have been mothers, but before we explain it away, as it has been, with gendered suggestions of mental illness, attention seeking, etc., let’s also remember this story about a father — and high-ranking former Bush official — who shot his autistic 12-year-old son in a murder-suicide inside their suburban McLean home.
Three problems.

First, again, the discourse of overwhelmed parented in these murder cases is not the dominate correlation. The dominant correlation relates to ideology about the fundamental nature of disability.

Second, Lee doesn't dig into the evidence behind the "news of overwhelmed parents," but just assumes that this discourse is accurate. It isn't.

Third, although I believe that Lee and the others genuinely fear that, somehow, a highly successful person with a disability might somehow erode support for those whose delays and difficulties are more acute. They aren't just making up the fear. They feel it. But why? No one cites any examples or evidence for how a successful person with autism might erode support for those for whom the challenges are more acute. As near as I can tell, it's just a gut feeling. I think it's mistaken.

The author suggests:
Being a parent of a child with severe autism in no way diminishes my respect and admiration for Jerry Seinfeld and others striving for autism acceptance. What I am proposing is separating the high-functioning end of the spectrum — perhaps calling it something else — so that we can focus on the urgent and looming issue at hand.
We had that. It was called Asperger's Syndrome. The Aspie diagnosis was a point of identity for some inside the community, but it was deemed non-scientifically accurate because there was no clear line between Aspie and Autism. Rather, there's a very large spectrum. That's our best understanding of what the condition actually is. How it makes us feel shouldn't override the science.

And here's the part where my critique of Lee gets personal. She's at one of the great universities of the world. She has a book coming out on the future of medicine from Simon & Schuster. And she concludes:
It’s only a matter of time before another child is killed, and we won’t even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola.
She's right that it's only another time before another child is killed. It's not, though, a public health emergency. It's a discourse and representation emergency. It's a political emergency. It's a language emergency.

I see Seinfeld's coming out as a positive, helping to shift the conversation, at least potentially. I see this Salon piece as very troubling, feeding into a kind of othering that isn't helpful and might, in fact, correlate strongly with those who do the worst things imaginable to their children.

Tuesday, November 18, 2014

Abortion vs Hardship / Happiness vs Murder - The False Binaries of the Down Syndrome Abortion Debate

I have a new piece up at Reproductive Health Reality Check. It continues to explore the themes of how we generate a new rhetoric for people who are pro-choice, pro-information, and anti-eugenics.

It takes as its lede a story about a woman who wishes she had aborted her child with Down syndrome, born these 47 years ago. Rather than condemn her choices then or her wishes now, I try to unpack her narrative to think about what it says regarding hardship and advocacy.

I write:
Relf wrote that while she loves her son, she wishes she had aborted him. For parents of fetuses with Down syndrome, Relf implied, abortion is the only way out of a lifetime of obstacles.
The broader Down syndrome community of parents typically responds to stories like these with outrage or sadness. Instead of acknowledging the validity of the hardship narrative, we often chooseto promote superficial cute and happy imageries of life with Down syndrome, as if to acknowledge the challenges would be to promote aborting fetuses with disabilities. We, too, have bought into a narrative of limited, inaccurate choices: that someone must either constantly celebrate Down syndrome with no discussion of the difficulties it can present, or effectively be supporting eugenics.
I argue we need something more complex:
So here we have two different false binaries. Neither is true; both remove the agency from people with Down syndrome. Furthermore, neither identifies the clear missing piece—what if, instead of leaving people like Relf isolated and struggling, we identify ways to build a robustly inclusive and caring society? What if we fight to expand access to support for all parents? We can break these dualistic fallacies apart.
So that's where I stand, at least for now, as my understanding develops. Working to make a better world. Working to make sure prospective parents get the best information possible. And then respecting whatever choices such women make.