John T Williams - Deaf First Nations Woodcarver Killed by Police (from 2010)

This story was just brought to my attention in the comment from "Mel" in my previous post.

In 2010, John T. Williams, a Native Alaskan woodcarver, was walking down the street holding a 3-inch folding knife and a piece of wood.

Officer Ian Birk approached him from behind, firearm drawn, and ordered Williams to drop the knife.  Williams kept walking, so Birk shot him in the back four times. Backup arrived, and then they approached the body and cuffed him. As near as I can tell, no first aid was applied. Video is below.

Birk was not charged.

After an inquest into the Seattle police shooting last month, four of eight jurors said they believed Officer Ian Birk thought Williams posed a threat during the Aug. 30 incident. Three couldn't determine whether he did. Only one juror believed Williams actually posed a threat.

Witnesses to the shooting testified that Williams -- a heavy drinker who had mental health problems, according to family members -- wasn't threatening the officer and that Birk may have fired in haste. Birk, however, maintained that he feared for his life and had to shoot Williams. 

When you watch the video, it will be hard for me to understand how an armed officer approaching a slowly walking man in his 50s from behind could justify being afraid. But this is the pattern. No one can prove whether or not the man was afraid (although "reasonably" afraid is, as I understand it, the legal standard).

Here's why this case matters especially to me. Williams was deaf in one ear. He was, according to a family member, wearing earbuds at the time as well. He couldn't hear Birk. And because he couldn't hear, he was killed, and the killer escaped without criminal charge.

The police review board did find the killing unjustified, Birk resigned, and the city settled a lawsuit for 1.5 million dollars.

This is the cult of compliance. This is the "be normal" or die mentality, which demands that each of us comply in a "normal" way or be deemed a threat. Mostly the cops get away with it. Sometimes they are held accountable. Rarely they are charged with criminal conduct.

It happened last week in Bessemer, AL. It's going to happen next week too, somewhere.

#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.

#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.

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.

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 Guardian,  Lee 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.

• Ellen Arnold on the way we compare historical disasters. It's not about size of the disaster, but the human scale. Each life matters.
• Amy McNally on what you should when someone tells you they are considering suicide.

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.

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.

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.

My job at last night's National Book Awards #NBAwards was to shine a light on tremendous writers, including Jacqueline Woodson... -DH [1/2]
— Daniel Handler (@DanielHandler) November 20, 2014

...and not to overshadow their achievements with my own ill-conceived attempts at humor. I clearly failed, and I’m sorry. -DH [2/2]
— Daniel Handler (@DanielHandler) November 20, 2014

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. 

I'm tired of the racist joke-pillory-apology pantomime. Rather just see people give money and jobs to people of color.
— Saladin Ahmed (@saladinahmed) November 20, 2014

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 Havermann]

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.

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.

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.

Tanesha Anderson - Another Disabled Person Killed by Police

So here's the pattern. The family of a person with psychiatric disability decides that they need help. The disabled person isn't taking their medicine. They are perhaps seeming violent or might become violent. The family calls the police to ask for help getting the person to the hospital.

Police arrive. The person with the disability behaves in an unpredictable manner. The person with the disability behaves in a stubborn manner, not complying with orders the way a neurotypical person might. Police get violent. The person who the police were there to help dies or gets seriously hurt.

Add race to the equation, and the likelihood of that violence intensifies.

The newest victim of this pattern is Tanesha Anderson.

The Family calls for help:

Officers were called to the home after a family member reported that Anderson was disturbing the peace.
Patrolmen had lengthy discussions with Tanesha Anderson and members of her family. Everyone agreed she should undergo an evaluation at St. Vincent Charity Medical Center, police said.

The police say:

As the officers escorted Anderson to the police vehicle, she began actively resisting the officers," police spokesman Sgt. Ali Pillow said in a press release.
Officers placed her in handcuffs and she began to resist officers' attempts to put her in a squad car, Pillow said.
"The woman began to kick at officers," he said. "A short time later the woman stopped struggling and appeared to go limp. Officers found a faint pulse on the victim and immediately called EMS."

Anderson's brother says:

Two male officers escorted Tanesha Anderson, who was prescribed medication for bipolar disorder and schizophrenia, to the police cruiser. She sat herself in the backseat but became nervous about the confined space and tried to get out, Anderson said.
Police struggled to keep her in the car and an officer eventually drew a Taser. Joell Anderson said he begged the officer not to use the weapon on his sister.
Tanesha Anderson called out for her brother and mother while an officer repeatedly pressed down on her head to get her into the backseat. After several attempts, the officer used a takedown move to force her to the pavement, Joell Anderson said.
The officer placed his knee on Tanesha Anderson's back and handcuffed her. She never opened her eyes or spoke another word, her brother said.

Here's the thing I want to emphasize: At no time was anyone in danger. At no time was Anderson a danger to herself or others. The police just decided that because she wasn't complying, it was time to tackle her and she died. An accident, yes. The police didn't intend for her to die.

They just intended to control her to the ground, and now she's dead.

Sunday Roundup - Two Week Bonus Edition!

I missed last Sunday's roundup as I was frantically finishing my proofs. Soon (February), you will be able to buy my book! Please buy my book (or at least recommend it to your university libraries). You can't buy it yet, though.

Child Murder

I had two published essays last week and associated blog posts. The big one was from CNN on the murder of children with disabilities. In the piece, I talked about the need for victim-centered narratives, rather than focusing on the (very real) challenges of the parents.

 In my post, I summarized the piece and pointed to the end, with the dangerous messaging of Autism Speaks and less reputable (anti-vax) organizations. Autism Speaks really needs to be dethroned as the big Autism group or transformed into a less ableist organization. We can do this by constantly challenging their messaging and calling them out.

My CNN piece has been criticized for linking Jillian McCabe, who was apparently hearing voices and suffering from a broad mental health crisis, to other killers. The criticism is that it demonizes people with mental health issues. I accept this criticism as valid, and yet continue to feel strongly that the first story has to be about the victim and to push back against the media narrative of disability as a burden that justifies violence.

But a second story, to be sure, is that people in mental health crises need a better system in which to get their help they need. Still, reading account after account of these murders makes me wonder how many child murders involving disability or not involve some form of mental health crisis. My general assessment is ... nearly all of them. I'm not an expert and would accept correction, but none of these parents seem mentally sound at the moment of murder. It's only in the cases involving disability, though, that the media and the courts/juries generally invoke the disability as explanatory.

Here's a new case from England in which there's no murder trial for a mother who smothered her three children. We can, of course, tell more than one story at a time, but I am continue to continue my work to promote victim-centered narratives as our first step in any such tragedy as this. And there will be more.

Academia and Disability

I wrote a piece for the Chronicle on college programs for people with intellectual and developmental disabilities. In my blog post, I asked every academic to send this article to their administrators and say - we could do this too. I hope at least some wrote in.

The NEH

I got my FOIA documents back from the NEH. I argue that their process for cutting the overseas summer seminars was not a process at all. I was, however, pleased to see that the Medieval Academy formally protested. We need our elite academic organizations to this kind of work, as the NEH clearly won't listen to plebeians like me.

Other Academic Stories

The most read blog post of the last few weeks contained my (somewhat rambling) thoughts on the problem with trying to streamline humanities dissertations to 6 years or less. I argue for the importance of enabling wandering. A friend points out that wandering is a very privileged kind of activity, and I agree. We ALSO need to enable speed and efficiency for those who need and want that. There's a both/and solution here.

I wrote two blogs on medieval myths and imagery that permeate modern discourse. One on the blood libel, another on a "pork-eating crusader" patch for sale with an ISIS hunting kit. I think the kit is aimed at the American right wing. I suspect a lot of those right-wingers believe themselves to be supporters of Israel. I wonder if they know anything about the Jewish origins of anti-pork dietary laws.

Assisted Suicide

As I write about the discourse surrounding child murder, I've been thinking a lot assisted suicide. I offered a little data here on why people kill themselves (fear of loss of autonomy leads). And then a few more thoughts in "Killing Nancy," a 12-year-old girl euthanized by her parents.

Thanks for reading. Next week I'll be writing articles about male feminism, abortion and Down syndrome, and the precarious ABLE act.

Finishing a Humanities Dissertation in Six Years - My Advice

Mark Braude, a Stanford Post-doc, has written a perfectly reasonable essay of how to finish a Humanities dissertation in 6 years. Good job Mark. I'm genuinely glad you're writing in public and congratulations on finishing so quickly.

Higher Ed pubs, in general, publish many of these essays in which the author takes his or her individual academic experiences and generalizes them as "here's how I did it" advice. They "bootstrap," telling a story about how with just hard work and good spirit the author faced down the odds and made his or her own American dream possible. hey aren't my favorite genre. Too often, they ignore privilege and other unseen factors (like luck, especially luck) that made the positive outcomes possible. For example, this "Confessions of a Prolific Academic" is the worst kind of bootstrappy writing.

Braude's essay is fine. I think, though, that there are some structural issues worth exploring. His advice includes: Hit the ground running, Make coursework part of your dissertation process, Get to archives fast, go to conferences, use your advisor, ignore your advisor, make teaching productive, be ready to change or adapt topics, get a reading group, and so forth. All good advice.

I agree that it's totally possible to write a dissertation, from BA to Completion, in 6 years. I took 9 and a half years, though, and would now like to generalize from my experience to offer some other bits of advice to people who want to make PhDs more speedy.

1. Study the 20th or 21st century. Preferably America.
2. Figure out what languages you might need and learn them in college, or preferably highschool.
3. Do not, under any circumstances, decide you might need to learn Greek for your dissertation (or Turkish, Arabic, Hebrew, Farsi, Urdu, etc...)
4. The thing where you marry a belly dancer/massage therapist and then she leaves you one Friday in October followed by a year of writers' block is definitely a bad idea. This one might be more personal than the others. At any rate, don't have any disasters in your personal life, that's the real advice. [UPDATE: It's been pointed out this could read as sexist. This is a true story. That my first wife left me had nothing to do with her professions, but rather our flawed communication, as happens sometimes].
5. Don't let your adviser take another job somewhere else, or, if they do, cling to them
6. Be open to change maybe, but not too much change. Don't swap fields just because you become interested in something new, as you age from, say, 23 to 26.

There are two main problems with this need for academic (relative) speed. First, such arguments tend to be deeply presentist and single-language-group-ist. It's not that people don't learn other languages for faster dissertations - Braude has French, for example - but that such faster projects preclude projects that require multiple languages. My sources are in medieval Italian, French, Latin, and a little bit of Greek. I did not learn these overnight.

There is no time like grad school to learn a lot of languages - most people are not going to add Arabic or Turkish (just to think about the Mediterranean world which I study) on the tenure track, let alone trying to cobble together a job in temporary positions. And then, of course, there's paleography. Braude's sources were, I expect, either typed or, at worst, written in modern hands in modern French. That doesn't mean his project is any less worthy than mine, just that learning the technical skills required to complete it took less time.

This is a solvable problem. When the MLA came out with their new "five years" guideline, they acknowledged that people with language needs should be allowed to take longer. But my second point is more abstract. As we streamline graduate studies, we make it less possible for people to wander, intellectually.

A few months ago, I wrote a piece on "saving the dissertation." I told my story:

It’s true that we could, and probably should, restructure graduate school to respond to changing conditions in higher education. But the Ph.D. process still needs to show that a transition has taken place—from student to scholar. For many people, the dissertation actually works pretty well in effecting that transformation.

My path through graduate school was long and twisty. I changed fields. I wandered. I collected incompletes as if I were trying to assemble a matched set. I endured a brutal cycle of historiography classes and encountered professors who doubted I would make it. On one occasion, a professor returned a paper to me ungraded, because he thought that seeing the mark that I deserved would depress me.

What saved me was, in fact, the dissertation. I found an old set of books in a sub-basement of the library. Their topic—narratives of relic theft out of Constantinople in the 13th century—was at least as esoteric as the footnotes of Duns Scotus. I was hooked. I wrote an essay, a piece of my master’s thesis, and then a dissertation proposal. I got a grant and found my identity as a scholar while walking between the Marciana library and the church of San Marco in Venice, thinking about the interactions of ideas, space, and objects, and trying to articulate those thoughts in a little apartment on the Street of Paradise near the church of Santa Maria Formosa.

My transformative experience, however idiosyncratic, did not happen by accident or luck. It emerged by design out of the nature of a humanities dissertation program. Moreover, such experiences can only be expected to take place within graduate school. In order to succeed, I needed the time to wander and to fail. In my first jobs, I surely did not have that kind of time and don’t think I will again for at least another decade.

 I finished by saying:

I’m skeptical, given the other recommendations in the report, that a reimagined dissertation within an accelerated framework is going to permit people to stumble toward becoming scholars. Instead, the new regimes will support students who arrive with a clear plan and a narrowly focused topic in a field with which they are already familiar. I worry that we will lose the wanderers who might find something new and surprising.

I want graduate school to reward and encourage the driven people, like Braude, who have a plan and the means to execute it, even if his plan did develop over his six years.

But I also want room for the wanderers. Go talk to your colleagues and you'll find many scholars who you respect, whoever you are, who did not have a clear plan and a narrow vision when they entered graduate school. Instead, they constructed it slowly, with many mistakes, over the years.

Too much emphasis on speed would remove those scholars - would have removed me - from the profession. So let's be clear about the consequences of that emphasis as we move forward, re-designing graduate studies in an ever more fraught academic environment.

NEH and their REDACTED Decision-Making

After the NEH cancelled overseas summer seminars, I requested two sets of documents via FOIA.

You can read all about the context here (article over at the Chronicle), here (collection of comments on how important the program is), and here.

My FOIA requests were:

1. All documents (I listed many types) about the cancellation of the summer seminar.
2. All documents responding to Senator Jeff Sessions' criticism of the NEH.

#2 came in with 1144 pages, leading to a long letter in which the NEH responded to his questions. I worked through them yesterday (heavily redacted, heavily repetitive, but had some useful material).

#1 came in with 16 pages. You can read them all here (in pdf).

What I wanted to see is how the NEH responds to political challenges like Sessions' letter. The Director of Communications has claimed that the cancellation of the programs had nothing to do with Sessions. Anonymously, various people at the NEH or people who have talked to folks at the NEH (nothing reliable) have stated that they believe it's all political and directly linked to the Sessions letter.

Unfortunately, the actual process is entirely redacted. Still, you can tell a lot by the scope of the archive. Here's something important - they decided to cut this major component of their programs in one meeting, a "back-of-the-envelope" calculation (which they refused to provide me), and about six emails.

Again - according to their own documents, deciding to cut the NEH Overseas Programs took one meeting, some rough calculations, and about six emails.

That's how much they value you, O Academicians.

The NEH has the right to align their budget however they want. They are not, however, sovereign. They are beholden to the taxpayers. To the White House. And to the people who work in the Humanities with whom the NEH collaborates. When they render edicts down, rather than engage in dialogue, they lose allies. And they lose allies at EXACTLY the moment when they need allies most. Sessions, as the incoming Senate Budget Chair, is going to hammer the NEH. The NEH, in its turn, is going to want me to care.

First step towards me caring - transparency.

UPDATE: For people unfamiliar with FOIA (like me four weeks ago), here's how they justify redacting their text (pdf of the letter). It's a "working documents" exemption meant to protect documents in which people are giving their unvarnished opinions over email. The fear is that if they don't have this protection, no one will be able to give advice to anyone.

The NEH does not have to redact them, of course. It's a choice.

There are references to minutes in the documents above which are quite likely not protected. I may file another FOIA to get them.

Blood Libel in the 21st Century

Medieval art historian Asa Mittman has a new piece in The Conversation on the survival of the Blood Libel myth. He talks about the medieval origins and dissemination of the myth that Jews ritually murder Christian children and use their blood to make their Matzoh (note: they/we don't. They/we never did).

He called it a "zombie lie," unkillable, rising again and again no matter what we do. He discusses a Facebook group dedicated to the Blood Libel, then broadens out to engage with antisemitic myths more broadly. At the end, he writes:

The blood libel is still told and retold, and The Protocols are still read as if they contained truth. We live in a moment when anti-Semitism seems ascendant to many, or is perhaps being revealed after a period when it was largely underground, filling up the anonymous comment threads of the Internet. Now, we see protests in the streets of Europe, and a resurgence of long-dead chants.
Protesters in Belgium and France have revived “Death to the Jews!” while Germans have resurrected “Gas the Jews!” In London, pro-Palestinian protesters have shouted “Heil Hitler.” Rioters have thrown rocks through windows of Jewish-owned businesses, and even burned some down. Newsweek devoted a cover story to the potential exodus of European Jews, some of whom are so concerned with rising anti-Semitism that they are considering leaving their home countries.
Most fictional monsters have bodies. This is how heroes can kill them. But zombie ideas like these are more resilient than their fleshy namesakes – and more dangerous.

Like Asa, I'm a medievalist, and I'm interested in myths. Myths emerge and re-emerge when they serve a function, and it's been troubling to see the medieval western myth of the Blood Libel take root in contemporary anti-Jewish discourse, especially among Palestinian voices.

It is vital to reject the Blood Libel and similar myths, to condemn without hesitation or contingency, and not to try to explain them away in the face of Israeli aggression. There is no place in the modern world for the Blood Libel myth.

As a historian, I want to understand. I want to worm my way into a culture and see how even the darkest ideas emerge, and to do that well, you have to try to get inside. But such a pathway has dangers, because explanations can easily turn into justifications, and some things are simply not justifiable.

Thinking about College - We can do this.

I am a college professor. We have a college savings fund for my daughter, principally funded by parents so far, though we're beginning to be able to contribute too. We do not have a college savings fund for my son, because he has Down syndrome, and we never thought that college was a reasonable option.

We were wrong.

This is the viral video of Noah VanVooren getting into the "Cutting Edge" program at Edgewood College, in Madison WI. Like a million or so other people, I saw it and thought - what? College? What's this program? I looked it up. I said, "wow!" And then I thought - well, I go to Madison all the time for music gigs and I write regularly for the Chronicle of Higher Education, I bet the folks at Edgewood  would talk to me (also coincidentally the sister school to Dominican University, where I work, as they were both founded by the Sinsinawa Dominican order. We share a mission).

I spent a lovely summer afternoon meeting people at Cutting Edge, including the founder Dedra Hafner, and Katherine Coogan, a student with Down syndrome who came over from Janesville. It's a terrific program and Hafner is an immensely savvy director, thinking hard about how to make the whole program integrate across the campus. It's a model of thinking inclusively as an epistemology, not just in terms of class time and hourly schedules. 

Today, The Chronicle published my essay on No Longer 'Falling off the Cliff': 

Programs like Cutting Edge provide a way for colleges to respond to what many disability advocates call "falling off the cliff." When a child is diagnosed with a disability, all kinds of government-support structures kick in to provide education, services, transportation, and health care. It’s often necessary to fight for optimal services, but the system is, at least, there.

But at age 22 (or in some states, 19), someone with a disability loses that infrastructure, and "falls off the cliff" into a much less organized world. Beyond the issue of finding new services, there’s just a fundamental question of what the disabled should do. School provides community along with education. Without school, many people with disabilities risk becoming isolated.

Increasingly over the last decade or so, colleges like Edgewood are trying to provide a higher education to people with developmental disabilities that can build on the good work done in secondary education. A project called Think College: College Options for People With Intellectual Disabilities—run out of the Institute for Community Inclusion at the University of Massachusetts at Boston—has been coordinating such efforts, building standards, and working with the government to provide more support.

The cliff is real and it's scary. Moreover, there is no one program that can address it. Instead, what we need are creative people thinking about jobs, trainings, community groups, internships, camps, and, increasingly, college.

There are issues. It's not free. It doesn't fall into our traditional (though much contested) model of financial aid being an investment in a college-educated well-paying career. Most financial aid isn't even available. I talk about these issues in the article. Still, I conclude:

My son, Nico, has Down syndrome. He’s 7 years old, and until recently we hadn’t saved a penny for his college. Why would we? Then we saw Noah’s acceptance video, and I got to meet Hafner and Coogan. Now, we’re thinking college. Moreover, for the first time, we see college as part of the solution to building a better life for our son.

Which is to say - time to start saving. Time to start thinking college.

Finally, a call for action.

If you are an academic, please share my article with your administration. Say to them that this is possible. It's not charity. It's a form of public engagement (a university working on a major social issue - "the cliff"). It's complicated but not ultimately disruptive. That it fits into diversity initiatives (mantra: disability is diversity). That there are people at the Institute for Community Inclusion who want to help you. Take this article to your administration and say - we can do this. We should do this.

Thank you.

The Murder of Children with Disabilities

I have a new piece up on CNN about media discourse and the murder of children with disabilities.

London McCabe was a 6-year-old boy. On November 3, he died when his mother threw him off the Yaquina Bay Bridge in Oregon, according to police.

London had autism. Media coverage of his death has widely focused on the stresses and challenges of raising a child with autism. In other words, the stories are about his mother and her problems finding help, not the dead boy.

This is a mistake. In all cases of violent crime, but especially those involving people with disabilities and their caregivers, we need to mourn the victims, rather than explain away their deaths. Unfortunately, whenever these terrible kinds of tragedies take place, which they do far too often, we do just the opposite.

Stories about lack of support services position children with disabilities as burdens to their families. They portray the crime as understandable. Such stories perpetuate the idea that it's better to be dead than to be disabled, that life with disability is life without meaning, and that tired, stressed, caregivers have no hope. No wonder, in such a narrative, the parents do such terrible things. The children, or at least their disabilities, become responsible for their death.

 A few additional thoughts.

1. I wrote this piece thinking a lot about assisted suicide and the ways in which we do and do not value the lives of the disabled. I see a much broader pattern of discourse that plays out in these murder cases in particularly clear ways. But it's a bigger problem.

2. Here's the other point from the essay:

[There's a] huge industry dedicated to the eradication of autism through quack treatments and the belief that environmental factors such as vaccines cause the condition (Note: They don't). Such false arguments perpetuate the idea that autism can be beaten through treatment; when treatment fails, some parents turn violent.

Indeed, in the months before killing Alex Spourdalakis, his mother, Dorothy Spourdalakis, had turned to anti-vaccination conspiracy theorists such as the group Autism One and Andrew Wakefield, the former doctor and notorious fraud. Wakefield criticized the medical profession for its treatment of Alex and advocated for access to "cures," a campaign that continues today.

And it's not just these fringe groups and snake-oil salesmen perpetuating this ideology. Autism Speaks, the biggest autism awareness charity, fundraises through military language mixed with demands for pity. For Autism Speaks, a group that has been criticized for having no people with autism on its board, autism is the enemy that must be eradicated.

I've written about Autism Speaks here.

Thanks for reading and sharing.

ISIS Hunting Kit - Pork Eating Crusader

From Digby, we get this find:

The ISIS Hunting Kit (Available vs DoNotLink)

This is their "Go Fuck Yourself" Patch

So, there's that. 

Killing Nancy - Assisted Suicide and Media Discourse

The physician assisted suicide debate is taking place right now, thanks to Brittany Maynard's decision to go public with her death plans, on multiple levels.

1. The abstract ethics of the practice (in abstract, I'm for it).

2. The ways in which it's applied (in practice, the innate ableism of our society encourages certain kinds of people to kill themselves, and not others)

3. The media discourse.

This blog post is on #3.

In the UK, the mother of a 12-year-old girl was given permission to have her daughter's feeding tube withdrawn, ending her life. The girl could not communicate in words and was, due to a post-surgical infection, in constant agony. I am willing to entertain the notion that, in the abstract, this was ethical - constant agony, no hope of remediation, no ability to communicate.

Here's the (a) problem with the coverage (quoting Ari Ne'eman, founder and president of the Autistic Self-Advocacy Network, my emphasis):

What Ne’eman worries most is that Nancy died not to relieve her pain, but because she was disabled. “The media coverage implies that those who need a feeding tube would be better off dead. Nancy’s killing puts into action longstanding statements that it would be better to be dead than disabled,” he said. “People have trouble imagining that people who require assistance with eating, breathing, getting dressed have lives worth living.”

The tabloid press coverage so far, which has been very sympathetic to Ms. Fitzmaurice, does seem to be blurring the line between whether hydration was withdrawn because Nancy was in pain or because Nancy didn’t have a good quality of life. For example, The Mirror says that Nancy “could not walk, talk, eat, or drink. Her quality of life was so poor she needed 24-hour hospital care and was fed, watered, and medicated by tube.” Which may indeed sound like a wretched quality of life to those unfamiliar with disability, and the phrase “watered” is further dehumanizing.

It is one thing to have a conversation about ending pain that cannot be mitigated. That's a very complicated issue.

It's another to link the ending of life to disability. How we talk about these things, especially in the media, shapes our understanding of what disability is, what a good life is, what a meaningful life is, and more.

Letter to the NEH from the Medieval Academy

The NEH assumption is that the overseas summer seminar program is done, dead, buried, and finished. They have decreed it so, in their imperial majesty, while hiding culpability and process.

In response, the most prestigious academic organizations need to take stands, rather than letting this just slide away into fait accompli. I'm pleased to say that the Medieval Academy has done just this.

Their letter is here. It's signed by William Chester Jordan, the president, and Lisa Fagin Davis, the Executive Director, and I'm very pleased to have their voice on record.

Some quotes:

We understand that the NEH has come under increasing budgetary pressure in recent years; however, we feel it continues to be crucial that the NEH support the best possible programming, and the best possible professional support for our Humanities scholars. Excluding Institutes on the basis of their geographical location seems at odds with this.

A foreign-based NEH Summer Institute or Seminar provides many scholars with a rare opportunity to work abroad, to experience the places they study, to consult original documentation and artifacts, and to meet with foreign scholars and lay the groundwork for future collaborations. All of this enriches both the scholarship of these academics and the scholarly culture of our country. Moreover, our participating scholars act as scholarly and cultural ambassadors for the U.S., at a time when our country’s position as a leader in setting global cultural and intellectual trends is increasingly less secure. Cultural isolationism is a not an effective strategy either for our country or for the NEH.

The NEH has, out of fear of the right-wing, chosen isolation. I'll have more to say about their strategy in the coming weeks.

Assisted Suicide - Some data

Content Note: Suicide

Recently, Brittany Maynard, a young woman with terminal brain cancer, chose to end her own life. She deliberately made her death very public in hopes, I believe, of sparking debate and conversation.

I am still deeply busy in book proofs so cannot write much, but I tweeted this:

It's reasonable to be pro the principle of asst suicide while recognizing the ableist bases for how it's applied. @LCarterLong @RickGodden
— David M. Perry (@Lollardfish) November 3, 2014

I stand by that argument. In theory, the right to access to physician-assisted suicide is one I support, I am concerned that in practice people encouraged to take their lives are those who society judges less valuable - not just the disabled, but certain kinds of disabled people, people lower down the disability hiearchy, people experiencing certain kinds of hardship we see as less ok than other kinds.

Here's some data, courtesy of Lawrence Carter-Long, who is a powerful voice on these issues. This is an article published in the Journal of General Internal Medicine. It is only one study. It is only 83 cases. But it asked about reasons why people commit physician-assisted suicide, and here's what they found:

According to family members, the most important reasons that their loved ones requested PAD, all with a median score of 4.5 or greater, were wanting to control the circumstances of death and die at home, and worries about loss of dignity and future losses of independence, quality of life, and self-care ability. No physical symptoms at the time of the request were rated higher than a median of 2 in importance. Worries about symptoms and experiences in the future were, in general, more important reasons than symptoms or experiences at the time of the request. According to family members, the least important reasons their loved ones requested PAD included depression, financial concerns, and poor social support.

Control and independence. A future, knowable or unknowable. Not money. Not social support.

Which is too bad, because if it was money, that's a problem we could fix more easily.

Sunday Roundup - #NotAllMen, Cops, Abortion Rhetoric, and the NEH

I spent a busy weekend recording a live album with my band The Tooles. Someday, I fully intend to ask you to consider buying a copy. Other than that, midterms and book proofs have taken up most of my time, but I wrote four blog posts.

• Next week Jeff Sessions (R-AL) will likely become chair of the Senate Budget Committee. This is bad news for people who like thinking and learning, including the NEH. Unfortunately, the NEH has gone about reacting to this likelihood in the worst way possible.
• Then I reacted to a review of Katha Pollitt's new book Pro with some thoughts on a pro-choice and anti-eugenic rhetoric, and the work we need to do there. Pollitt and I have exchanged a few emails on the topic. We'll see how it goes. 
• Next, here's a piece on Wesley Lowery's question of how police should approach a situation in which there's a person with a history of mental illness who is armed with a knife.
• Finally, the way that "I don't see race" and the Hollaback street harassment video in fact enabled a #notallmen approach.

Next week is crunch time for proofs. Thanks for sticking with me as I finish this process.