Wednesday, April 26, 2017

Telling Time and Conceptual Competence

For the past year or so, Nico's expressive discussions of time have been emerging. He'll be in the bath, I'll ask him he's done, and he'll say no. "Two minutes," I say. "Two minutes," he repeats. If he wants more and I say, "10 minutes" he might say "15 minutes," and we negotiate. In general, his grasp of numbers is clear.

He also likes digital clocks. He likes watching the numbers move. He likes countdowns on timers.

What wasn't clear to me is whether he associated the passage of time on a clock to the "minutes" we discuss so often. I presumed he did. We always try to presume competence. But presumption is different than knowing.

Yesterday, I gave him his iPad right at 7. We leave at 7:30. I said, "20 minutes." He pointed at the clock over the stove, said, "30 minutes," and pointed again. I laughed and told him "30 minutes.

I love not only the demonstration of conceptual mastery, but the he deployed in resistance to my arbitrary exercise of authority. He got his 30 minutes.

Tuesday, April 25, 2017

Mom Charged with Disruption While Trying to Give Insulin to Son

Mom arrives at school to make sure her son has had his insulin, is told that the nurse is late, that she can't give the injection without the nurse, and that her son has to wait in the office, isolated from her peers.

She gets angry and is eventually charged with disruption. Accounts vary of what happened. I hope the kid is ok and not too upset.

Monday, April 24, 2017

Abortion and Disability: Pro and Anti

NOS Magazine published an anti-choice and a pro-choice piece, back to back, last week. The anti was written by Ivanova Smith and makes this argument:
Even though some in the disability community don’t see this as a modern form of eugenics, I do. Eugenics is advocating for the death of those who are seen as a burden, as weaker or as an inconvenience. I understand there are situations where abortion is necessary evil, like if the mother life is at risk or if she was sexually assaulted However, I don’t feel a person’s life should be a choice because they are seen as a inconvenience or burden. We are human beings. even with the cases above a life was lost and that is sad and should be grieved.
I value my own life and life like me. We all just want to live, like any other human beings. I hope someday people will see this not as partisan issue, but a bipartisan issue that we can all agree on.
The problem here is that Smith mentions eugenics, but doesn't learn the lesson from it. The history of eugenics is not about providing widespread access to reproductive care to all women, regardless of their race, class, disability, trans or cis ... the history of eugenics is about the state asserting control over the bodies of disabled people.

Arguments for the coercive power of the state over reproductive access have never, and will never, work out well for disabled people. It is possible to assert the value of diverse human life without arguing for state coercion of women. It is, in fact, necessary to do so.

Fortunately, Shain Neumeier published a response that more than explains the problems with Smith's argument. My emphasis:
The hardest thing about the current framing of the abortion debate for disability justice advocates is that it forces us to choose between two of our core convictions: Inherent human worth and bodily autonomy. As a disabled person, an asexual non-binary person who was assigned female at birth, and an activist, I hate the ideas and circumstances that have put these principles in opposition to each other. Still, the choice is easy for me to make. My nearly absolute belief in bodily autonomy means nothing if I’d support forcing a person to remain pregnant and give birth against their will for any reason because of my own opposition to eugenics.


My opposition to eugenics comes as much from the coercion and violence with which it’s been carried out as from the underlying belief that disabled lives aren’t living. Legal or other limits on disability-selective abortion cannot and will not meaningfully address underlying systemic problems such as poverty and structural ableism in healthcare, education and employment that have perpetuated that belief and in doing so pitted disability and reproductive justice against each other in the first place. Their only purpose and effect will be to serve as a first step toward greater and more general restrictions on abortion and other forms of reproductive freedom.
A near-absolute committment to bodily autonomy  is, Neumeier argues, essential to the disability rights movement. Forcing women to give birth will be a wedge used to erode disability rights, not the salvation of disabled people.

Friday, April 21, 2017


Heading downtown today to the Chicago Comic Con ... as a journalist. I'll be meeting with Mikki Kendall to talk to her about diversity and genre and power and twitter and more, heading to a panel, and seeing what I can see.

Follow along with me on twitter and instagram.

Thursday, April 20, 2017

There Ain't No Dark Ages, Part 97!

It's time for Game of Thrones essays again, I guess, providing easy news hooks to medievalists everywhere.

This one from El Pais is excellent, if in Spanish (but Google translate does ok). It takes about the diversity and complexity of the medieval world, and I love this pullquote:

La unidad de la Edad Media es falsa, como lo es la de la antigua, de la moderna y qué decir de la contemporánea.
Only moderns think the medieval was somehow unified and "dark." READ THE WHOLE THING!

Wednesday, April 19, 2017

SUPPORT: Psych Ward Reviews

Psych Ward Reviews is Kit Mead's "Yelp for Psych Wards," a crowdsourced database of experiences and outcomes in psychiatric wards around North America. Crowdsources, but not crowdfunded. Mead has been doing this work on their own, and it's time for that to change. Join me in supporting Psych Ward Reviews on Patreon

Here's the origin story from The Establishment:
When I arrived at my first psychiatric ward, at George Washington University, I was crying. Instead of helping me to alleviate stress, the hospital gave me sedative pills to make me quiet. I took the pills, terrified of being seen as noncompliant — I had read so many stories about people’s experiences. These places almost always view us as noncompliant if we want alternatives to the treatment plan.
A more recent psych ward stay, at Georgetown Hospital, felt safer; Georgetown staff actually seemed to care, did their jobs to try and make me feel less distressed, and listened to me when I rejected the idea of adding an extra medication. And the medication they gave me finally felt like it was working. When I talked about the difference in treatment quality with my friend Sara Luterman, an autistic advocate and editor of NOS Magazine, their response got me thinking. They said, “There needs to be a Yelp for psych wards.”
It occurred to me that there was not anything quite like a Yelp for psych wards — no system with patient-based ratings gathered in one place. While reviews of psychiatric units of hospitals do exist on Yelp, they are inconsistent and scattered; there was no single review site, created with the explicit purpose of creating change and emboldening psych ward patients, and certainly no such site run by a former patient herself.
The work is incredibly important, will support further research, and might - with support - change the conversation around how we treat acute mental health needs.

Join me in supporting Psych Ward Reviews on Patreon.

Tuesday, April 18, 2017

Senator Duckworth: Air Travel and Disability

When the horrific United video broke last week, many disabled folks responded with empathy for Dr. Dao, but also by wanting non-disabled folks to realize that air travel has long been horrific for disabled travelers.

Now Senator Tammy Duckworth (D-IL) has gotten into the issue with a letter to Secretary of Transportation Elaine Chao, linking the United incident to her experiences traveling as a disabled woman.

The Senator takes issue with Secretary Chao's delay of consumer protections. The press release says:
"Under the new rule issued by the Department of Transportation (DOT), air carriers would be required to provide DOT with monthly reports detailing the total number of checked bags, wheelchairs, and motorized scooters, as well as the total number of wheelchairs and mobilized scooters that were mishandled during the reporting period. This rule would ensure that the more than 56 million Americans living with a disability receive protections and rights guaranteed under the Air Carrier Access Act."
Chao delayed it because, well, because Chao delayed it. The release continues:
“Air carriers must be held accountable for their passengers’ well-being and the quality of their service, and the U.S. Department of Transportation must play an active role in improving accountability,” wrote Senator Duckworth. “Delaying this regulation, which would have improved reporting requirements for mishandled and damaged baggage, may not seem significant, but it could have a profound impact on disabled travelers—many of whom are Veterans like myself. The delay appears to be part of a troubling pattern of decisions by the Trump Administration that show disregard for Americans living with disabilities, and I urge you to reconsider.”
 In her letter, the Senator talks about her own experiences traveling:
"Delaying this critical consumer protection, which would have improved reporting requirements for mishandled and damaged baggage could have a profound impact on disabled travelers - many of whom are Veterans like myself. The delay appears to be part of a troubling pattern of decisions by the Trump Administration that show disregard for Americans living with disabilities and I urge you to reconsider.
Though all travelers deserve information about the frequency with which an airline damages or loses baggage-information this regulation would have helped provide- travelers with disabilities need access to that information. If an airline loses a passenger's baggage, it is a serious inconvenience. If a wheelchair or motorized scooter is damaged or lost, it represents a complete loss of mobility and independence for that passenger.
I know this first-hand-and this issue is personal for me. In the past year, I have had my personal wheelchair mishandled and damaged several times. I have spent hours filling out paperwork and working with the carrier to replace damaged parts. On a recent trip, I retrieved my wheelchair at the end of the jet bridge, but a titanium rod had been damaged during the flight and my chair literally broke apart while I was sitting in it. The airline was apologetic, but I was left without my primary wheelchair for over five days. I was lucky to have access to additional mobility devices during that time, but many consumers with disabilities do not."
I'm interested in the extent to which Duckworth takes ownership of disability issues, especially those not linked to Veterans and/or wheelchair users. It's still developing.

Chao has a pretty good reputation on disability issues according to some of the DC folks I know. We'll see!

Monday, April 17, 2017

Superbaby and Eugenics: He called my daughter lightning

The parent essay or memoir on discovering one's child is not typical in some fashion is at once among the most common disability-related genre and one of the most difficult to do well. Of necessity, the essay has to move through ableist ideas about normality, encounter the challenges of having a disabled child, and then come out the other side of that encounter with ... wisdom? Hopefully, wisdom. Often, such pieces just turn into gripe sessions about how hard it is to parent. Often, such pieces end up stigmatizing even when they plead for acceptance. Writing about radical transformations of one's epistemology of the normal is hard to do well!

In Vela, Heather Kirn Lanier has written "Superbabies don't cry." It's one of the best pieces of writing about parenting, let along parenting and disability, that it's been my pleasure to encounter. It's long but clear a little time and sit with this one. READ THE WHOLE THING. An excerpt [my emphasis]:
What would happen if we all created SuperBabies? Would we make a SuperRace? Fleets of SuperAdults so smart and wise and strong and nontoxic that they would never get cancer? (But they would of course discover its cure.) By age fifteen, they would teach their teachers. They would outrun all world records. They would eradicate every harmful chemical or they would somehow render all chemicals harmless to SuperBodies. They would, each one, win prestigious awards in their fields, twisting the bell curve into a radiant point of light from which would emanate their stellar, star-like performance. They would never know rejection. They would not know depression. They would not cry, or if they did cry, they would shed tears of existential meaning and fulfillment, reflecting on their infinite successes...

We want a SuperRace because we want to eradicate absolutely everything that terrifies us. We want SuperHumans so we can transcend that thing we are: human. But a SuperHuman would lack that crack in everything through which, as Leonard Cohen sang, the light gets in. There’s something in our suffering that we need. We’ve known this for millennia, and we make it clear in the stories we keep telling. The Buddha gave up his palace and meditated beneath a tree for a week. Jesus of Nazareth said yes to a cross. Our ache is our unfortunate, undeniable doorway. Give me your tired, your poor, your huddled masses, says the copper lady with the torch. When we walk into our pain, we sometimes find ourselves on the other side, freed of what we once thought we needed to feel free.
The key to this essay, I think, is tone. It's light, self-mocking, and then moves that self-mockery into a thorough critique of modern parenting discourse, and then to modern disability/health discourse more broadly, with the knockout:
Culturally, we fear disability and try to push it away. The evidence is in both the personal and the public. [my emphasis]

Women around me worry about getting pregnant by X age or else they risk having a child with chromosomal anomalies. On a podcast, a bestselling author says that holding onto anger and resentment will give you cancer. Kids with amputations are turned into poster children, and we raise money to try to prevent bodies like theirs from existing. “Don’t worry,” a pediatrician said after examining my second child just hours after I’d birthed her. “Lightning didn’t strike twice.” Let me reiterate: he called my daughter lightning. “How did this happen to you?” strangers ask the amputee, the blind man, anybody with a different body, and the interviewee will tell you: It often feels like a coded way of asking How can this not happen to me? When I was in elementary school, the kids in wheelchairs learned in a separate wing of the building. We—the able-bodied kids—never saw them. Hollywood storylines typically assign suicidal tendencies to quadriplegic people (see bestselling novel turned blockbuster hit, Me Before You) despite the fact that the vast majority of people with spinal cord injuries report good qualities of life.
This response to disability is so pronounced in our culture that Princeton ethicist Peter Singer can still keep his job when he argues that children born with disabilities can ethically be killed before a certain age. Even babies with hemophilia. Why? Because, he says, they suffer and cause suffering: [T]he total amount of happiness will be greater if the disabled infant is killed.
As always when I share a piece like this, my advice is to READ THE WHOLE THING.

Thursday, April 13, 2017

The man who shot Charles Kinsey

It really shouldn't be surprising when that the cop who shot a black man lying on the grounds with his hands up, urging his Latino autistic client to do likewise, was charged. It is surprising. We're not used to even this first step towards accountability happening.

But Officer Jonathan Aledda was arrested and charged with attempted manslaughter.

More on Charles Kinsey and Arnaldo Rios here and here.

Wednesday, April 12, 2017

San Bernardino and Empathy

I wrote a piece about the shootings in San Bernardino for CNN. Once the media realized it was neither terrorism nor Sandy Hook style massacre, national interest quickly faded. That's precisely the wrong choice.
My son is a 10-year-old boy with Down syndrome. He spends part of every school day in a special education classroom. He panics at loud sounds, placing his hands over his ears, crying, or just saying "no." It was too easy to imagine him there in San Bernardino. The new detail made the violence suddenly visceral.
The murder of teacher Karen Smith and 8-year-old Jonathan Martinez, one of her students, shines a spotlight on at least four of the major correlating factors that increase the risk that a person will suffer violence: disability, domestic abuse, race, and guns.
As we think about each one, we need to keep our empathy. We can't ever let ourselves get comfortable with this kind of slaughter. Then empathy must drive us to act by raising awareness about domestic violence and violence against people with disabilities. But most of all, as Karen Smith and Jonathan Martinez are laid to rest, we must first imagine, then act to create, an America in which there are fewer and fewer guns.

Tuesday, April 11, 2017

Switched at Birth Finale - I interviewed Marlee Matlin

I love the way the show Switched at Birth handles disability. I'm an overthinking critic, and I'm happy to overthink and criticize any cultural product, but I think Switched at Birth is amazing for so many reasons. But here's why I started watching it.

Emmett, in this scene, is arrested. He's working on his bike and can't hear anything, because he's Deaf. The police shout commands, but he just stands there, and then they tackle him. This is a dynamic that I cover in my journalism, but that I hadn't seen dramatized before. The show depicts it twice, once at the end of an episode without sound, and once with an episode.

I interviewed Marlee Matlin, a supporting character on the show, about her experience with Switched at Birth and her career and activism.

Let’s start with Switched at Birth. When I first heard the premise, it sounded like a pretty light show — but it’s changed the conversationabout disability on TV. What, in your mind, is its legacy?
I knew from the start that there was something unique and groundbreaking about the show. [Creator] Lizzy Weiss invited me to watch the pilot, and when I saw not only one deaf actor, but a number of them all signing, subtitled, and incorporated in a manner that I had only dreamed should happen in TV, I knew she had done her homework. Switched at Birth proved that deaf actors can be part of any TV show and there should never be a worry that somehow it wouldn’t work. Switched at Birth was definitely a game changer for the community of deaf actors in Hollywood, as well as viewers eager for diversity.
Can you tell me a story about about being on set when the show felt different to you?
It felt different the first day I walked on the set and was asked to do my lines without having to worry about having to speak, without having to think about the actor who would be translating my signs into responses that made it clear what I was saying or who was interpreting for me. My hands, my language, did all the talking, and captions took care of the rest. That was the moment I realized that I was finally free to act with the means that I was most comfortable with as an actor who happens to be deaf and who communicates in American Sign Language. Acting finally was available to me just like everyone else.

Monday, April 10, 2017

Hearing Aids and Social Stigma

The most interesting thing happening in hearing aid technology is not found in the tiny, expensive, invisible devices, but in the erosion of social stigma over visible assistive technology. Because big headphones with computers inside to manage sound are easier, and cheaper, to build.

David Owen, writing for The New Yorker, offered a long and interesting report on advances in tiny, powerful, hearing aids. It's a good piece, but I think it buried the most interesting thing at the end. He notes that the big problem with hearing aids, from a tech standpoint, is making them tiny and invisible, because people are ashamed of losing their hearing. This is a social problem, then, not a technical one. Owen writes, with my emphasis:
In 2013, Charlie Rose devoted a program to hearing loss, and during the broadcast two of the participants—Eric Kandel, a scientist who won a Nobel Prize in 2000, and Rose himself—were wearing hearing aids. (David Corey, the Harvard Medical School professor I met with, appeared on the program as well, and got a good look.) Yet neither man mentioned that fact, even though the program lasted nearly an hour and hearing aids were a major topic of discussion. The wearing of hearing aids has long been stigmatized in a way that the wearing of eyeglasses has not, and, as a consequence, hearing-aid manufacturers have invested heavily in inconspicuousness—one of several reasons that hearing aids like Halo and SoundLens sell for more than three thousand dollars each.
Stigma leads to cost.
Attitudes about visibility may be changing, though, now that people of all ages walk around with electronic gadgets sticking out of their ears. Hearing-aid companies increasingly compete with manufacturers of over-the-counter devices known as “personal sound-amplification products.” The cheapest psaps, some of which sell for less than fifty dollars, are notoriously junky and may even exacerbate hearing loss by indiscriminately amplifying harmful sounds. But some companies make user-adjustable Bluetooth devices that have received favorable reviews from technology critics and people with mild hearing problems.
Owen goes to lunch with someone from Bose who makes expensive, visible, devices called "Hearphones."
I put them on. “One of the things you get really good at when demonstrating this device is talking without saying much,” Franck said, then chatted away. I used a smartphone app to raise and lower background sound levels. I could also focus specifically on Franck’s voice or widen the range to include, first, the tables on either side of ours, then some chefs and waiters moving around in the kitchen, behind me. If my cell phone had rung, directional microphones inside the earpieces would have aimed themselves toward my mouth when I answered it. Once I’d found a sound level I liked, I used a slider in the app to fine-tune the pitch. I was able to play music in the background as we conversed—with far better fidelity than is possible with even the most expensive hearing aids—and I could raise and lower its volume independently from everything else.
Alice Wong, founder of the Disability Visibility Project, likes to say - "We are all cyborgs." As technology advances, we interface our lives more and more inextricably with it. It's easy to imagine a world in which stigma against hearing loss eases and people who wish to hear aurally just wear headphones. It's no more preposterous than a world in which people wear hats (which are also a form of assistive technology, cause the sun burns).

Friday, April 7, 2017

Rikers and Deaf Prisoners

Rikers Island is going to close. Good.

Talila TL Lewis, the founder of HEARD, writes: Don't forget Deaf prisoners in the ongoing fight to reform/abolish the legal and carceral system. READ THE WHOLE ARTICLE.
Deaf people at Rikers are not only denied meaningful communication with practically everyone on the island, they are denied meaningful access to their children, loved ones, attorneys and advocates because Rikers, like many other jails and all of New York state's prisons, has refused to install videophones for over a decade. All of this transforms the violent ordeal of incarceration into a nightmare of extreme language deprivation, horrendous abuse and depressing solitude. As a result, the deaf individuals presently incarcerated at Rikers and those who preceded them have quite literally been punished for being deaf -- and as recently as last month have been beaten by guards for reasons that remain unclear to them.
Lewis continues:
A decade of advocacy with and for several hundred incarcerated deaf people, many of whom tragically have not psychologically or physically survived their incarceration, leaves but one conclusion: The moment a deaf person sets foot in our jails is the moment they begin to die, and rarely is anyone ever held accountable for their descent or death.
Lewis, in their work, has documented both the horrific conditions under which Deaf individuals suffer in prison, and the relative lack of discussion of  those conditions not only within the broader media, but within prison reform and abolition movements. As always - READ THE WHOLE ARTICLE.

Thursday, April 6, 2017

Singer on Stubblefield

A year ago I wrote on the case of Anna Stubblefield for the Los Angeles Review of Books. Here's a long excerpt, stay with me:
Michael Gill has just published Already Doing It: Intellectual Disability and Sexual Agency (University of Minnesota Press, 2015). Gill’s book emphasizes the prevalence of sexual ableism, a “denial of ability to be sexual (or desexualization) for individuals with intellectual disabilities.” While much of the book focuses on sexual education, media representation, and other issues that may not be directly relevant to the Stubblefield trial, Gill’s overall framing of the project matters. In the opening of Already Doing It, Gill draws on Nigerian author Chimamanda Ngozi Adichie’s aphorism, as recorded in this TED talk, about “the danger of a single story.” Adichie, focusing on race and perceptions of Africa, argued that reducing people to one aspect “makes our recognition of our equal humanity difficult.” When it comes to sex and intellectual disability, Gill suggests, we pursue a single story of victimhood, unaware of the multiplicity of possible narratives.
We bring our own idea of what that story must be to the facts, warping them to fit our preconceived biases. Gill writes,
When discussing this project, I often encounter a response that imagines the most “severe” case. These responses, a type of single story, seek to discredit any effort to advocate for the sexual and reproductive rights of individuals with intellectual disabilities […].
It was, of course, the prosecutor’s job to present a single story of the worst-case scenario. That’s how trials work. In fact, understanding the Stubblefield case requires simultaneously holding two possible mutually exclusive stories in our minds: both terrible. In the first, Stubblefield used FC to help D.J. communicate with the world for the first time in his life. He and she became close. She helped him enter school and collaborated on an academic publication. Then they became lovers. When they told his family, though, they accused her of sexual assault and took away D.J.’s communication device. In the second, D.J. was never able to communicate, and Stubblefield unknowingly manipulated his communications, deluded herself into believing they were in love, and raped him. In the first, she is going to jail and he is trapped without the power to communicate. In the second, she abused a defenseless individual.
For the judge, only the second story was possible. His rulings on D.J.’s testimony, and the decision of the family in how they presented their son, shaped how the jury might be able to perceive D.J. From the beginning, he was an object, rather than a person.
 Disability advocate Julie Equality, who attended the trial, described how D.J., instead of using “a wheelchair, walker, or crutches,”
was physically supported by his mother. He looked like a baby being guided to take his first steps. […] D.J. was not seated in the courtroom for the trial because he was not considered a conscious person. He was presented only as an exhibit, and I mean that literally, not metaphorically.
The refusal to consider even the possibility that D.J. might be a person, able to move, to communicate, to desire, to consent, solidified the single story of the worst-case scenario. The jury accepted this narrative, grafting their own ideas about the undesirability of disability onto D.J.’s body. Reporter Bill Wichert interviewed a juror who “couldn’t understand” the relationship between Stubblefield and D.J. once she saw D.J. in court. “I was like … ‘You’re going to leave your husband and your kids for someone like this?’”
This unnamed citizen of New Jersey believed that D.J. was unable to consent and so in need of protection. He’s a victim, but not an appealing one, and she puzzled over the reasons that Stubblefield might jeopardize her career, family, and freedom for this unappealing object. To the juror, sexual desire for a disabled body, clad in a diaper (lack of feces control often emerges in narratives intended to minimize agency for disabled adults), is a mark of deviance. So although the purpose of the trial, ostensibly, was to determine whether D.J. required protection and to avenge wrongs done to him, the juror’s determination of guilt depended on disgust. She could not imagine genuine attraction; therefore, the sex acts must have been criminal. The worst-case story won.
Despite the guilty verdict, we still have no idea which one of the stories — both tragic, but only one criminal — is true. As an advocate, caught between the presumption of competence and the desire to protect the vulnerable, I would have made every effort to grant D.J. the agency to testify, trying all possible techniques. That didn’t happen.
I offer you this excerpt because Peter Singer, who routinely opines on the ways that disabled people cause less happiness than normal people, so can be killed (I summarize), has collaborated on a 95% good essay on the Stubblefield case for The New York Times. He and Jeff McMahan, a colleague of Stubblefield's, write about the sentencing of the woman for 12 years, then make two different kinds of arguments. The first is the same as mine about the "single story," albeit marked with language that a disability rights advocate would never use ("mute and spastic").
Rosemary Crossley, the defense’s expert on communicating with people with physical disabilities, assessed D.J.’s ability to communicate, spending 12 hours with him over three days, and found that he “wanted to communicate and was able to communicate, given appropriate strategies.” Her assessment was filmed by cameras in two positions. It was not based on facilitated communication but on methods that could have been viewed and judged by the jurors, such as requiring D.J. to touch, unaided, a “yes” or “no” button on a communication device and to answer multiple-choice questions, most of which he had to read for himself. Under these conditions, D.J. correctly answered 43 of 45 factual questions. The judge refused to allow Crossley to testify about her assessment, claiming that Crossley improperly assisted D.J. during the evaluation. The judge also did not allow the members of the jury to see the videos, which would have enabled them to judge for themselves whether Crossley had influenced the outcome.
She did, however, permit the prosecution to display D.J. to the jury for a few moments in his mute and spastic condition. It is well established in the psychological literature that people tend to infer cognitive disability from severe physical disability, especially when the disabled individual is unable to speak. There is no reason to suppose that the members of the jury were immune to this tendency. Yet fewer than 50 percent of those with cerebral palsy have any degree of cognitive impairment. In an amicus brief, intended to be heard in conjunction with Stubblefield’s appeal, the American Civil Liberties Union, joined by various disability rights organizations, said that in exhibiting D.J. to the jury in this manner, the court had failed to protect his rights. The appellate court, however, has refused to consider the A.C.L.U.’s brief.
This is the "single story." Only DJ as victim is presented, he never gets to be an agent, or even has a chance to have his agency assessed. I'm glad these paragraphs were written, though (see below), I think it contradicts with everything Singer has ever written on disability.

Alas, the essay then turns to rape. Singer will be Singer, so he writes that either DJ could consent, in which case consent ought to be part of the trial, or DJ can't consent, in which case he's not really rapable so long as he's having a good time.
A central issue in the trial was whether D.J. is profoundly cognitively impaired, as the prosecution contended and the court seemed to accept, or is competent cognitively but unable to communicate his thoughts without highly skilled assistance, as the defense contended. If we assume that he is profoundly cognitively impaired, we should concede that he cannot understand the normal significance of sexual relations between persons or the meaning and significance of sexual violation. These are, after all, difficult to articulate even for persons of normal cognitive capacity. In that case, he is incapable of giving or withholding informed consent to sexual relations; indeed, he may lack the concept of consent altogether.
This does not exclude the possibility that he was wronged by Stubblefield, but it makes it less clear what the nature of the wrong might be. It seems reasonable to assume that the experience was pleasurable to him; for even if he is cognitively impaired, he was capable of struggling to resist, and, for reasons we will note shortly, it is implausible to suppose that Stubblefield forcibly subdued him. On the assumption that he is profoundly cognitively impaired, therefore, it seems that if Stubblefield wronged or harmed him, it must have been in a way that he is incapable of understanding and that affected his experience only pleasurably.
Oy. So on the one hand, Singer says that personhood is complex and should always be considered in its complexity. This runs contrary to his decades of anti-disability writing. Did McMahan draft it and Singer just casually pass it over? His attitude towards disability has, in fact, always been slapdash, never engaging the evidence that might push him to rethink his core principles. On the other hand, he suggests that if you're too disabled to consent or not, you might not be rapeable, not really.

On the third hand, there's a Current Affairs write up that uses the Singer piece to attack Facilitated Communication. FC is complex, too. I wrote:
FC has been controversial since its inception in the late 1980s and early 1990s. It was hailed at first as a miracle, as the “silent” disabled suddenly could “speak,” but its reputation was quickly tarnished when a number of individuals seemed to use FC to make accusations of sexual abuse against their parents, accusations all later proven false. These accusations say at least as much about the era of broader hysteria over repressed memories of sexual abuse than the specific technique used to unearth such alleged repressed memories. In other, comparable cases of “false memories” elicited through talk therapy, the false accusations have failed to discredit the techniques by which they are elicited. FC, alas, pushes back against ableist norms that presume incompetence in the disabled, absent absolute evidence to the contrary. Its role in eliciting false accusations, therefore, permanently tarred it, for many, as a pseudoscience.
When it comes to FC, simple answers must be avoided. There’s ample evidence of individuals who have moved through FC to independent typing. They describe having been aware and attempting to communicate throughout their lives, including while using FC; therefore, there must be some people who can only communicate through FC, attesting to its validity. At the same time, it’s clearly possible for facilitators to fall prey to what has been called the “ideomotor effect,” unconsciously turning random movements of their clients into speech. Too many people, looking for a perfectly neurotypical mind inside a neurodiverse one, have fooled themselves into finding what they think must be there. Those people who passed through FC to independent communication stand as testimony to the technique’s possibilities, and to the intense and exhausting work required to make progress.
Let's avoid simple answers. Let's not use our avoidance of simple answers to dehumanize disabled people.

Wednesday, April 5, 2017

A wall.

No blog today because I was running an event FILLED WITH STUDENT ACHIEVEMENTS. It's one of the things I get to do. Here's a tiny sample.

Tuesday, April 4, 2017

911 and Cult of Compliance

It isn't safe for families to call 911 when their loved ones have mental health crises.

It isn't safe for families to not call 911 either.
Last Tuesday, the 29-year-old had a physical confrontation with his mom over the issue at their Snohomish home. Jen and her mother tried to get a mental health provider to help involuntarily commit Alex, but he wasn't deemed enough of a threat.
Reluctantly, they called 911.
"I was always so, so, so scared to call the police to get help," said Jen. "This is why."
Jen said dispatchers were told Alex needed a calm and quiet intervention at the house. When Alex tried to close the door on two Snohomish County deputies, Jen said they pushed their way inside and started shouting commands.
In his mental state, Alex was unable to comply and ran into his mother's bedroom.
Jen said officers escalated things quickly.
"They were tasing him, kicking him, punching him, and hitting him with batons,” she said. “He was just yelling for my mom to help him."
By the time Alex was adequately restrained, police noticed he had stopped breathing. They performed CPR for an hour, but their efforts were unsuccessful.
When non-compliance, on its own, justifies the use of force, disabled people die. This is the #CultOfCompliance

Monday, April 3, 2017

ASAN says: Don't Light It Up Blue

I am struck by how often the conventional wisdom of the disability rights movement does not extend into broader cultural areas, including quite progressive ones. Take yesterday, when  Chris Hayes, shared by Jon Lovett, admitted surprise that Trump would tweet about Lighting up the White House Blue, because it seemed like a decent thing to do.

But it's not. Autism Speaks is not a right-wing organization, but it an organization that has long linked "awareness" to the eugenic pursuit of "cures." Bob Wright, its millionaire founder, was an early Trump backer, who presumably used his influence to get the blue lights at the White House. Trump is an anti-vaxxer. Autism Speaks had a long history of anti-vax fearmongering before they finally rejected the myth (causing bitter division within the org, by report). Lighting the White House blue is a symptom of Trump's destructive presidency, not a counter-indicator.

Insiders know things. Outsiders don't. Figuring out how to change that is a major part of why I became a journalist, trying to shift inside voices to new audiences. Sometimes it works.

A couple of years ago I wrote in the New York Times about how I told my daughter she couldn't go to an ice cream fundraiser for Autism Speaks, then discovered that the person behind it didn't know about the problems with AS. I wrote it as a gentle introduction to new audiences about the problems of the organization, and share it again here, in case it's useful.

The self-advocate community is winning the autism culture wars, but progress is never linear. Autism Speaks now has autistic board members and is slowly shifting some of its rhetoric. I worry that in this regard, as in so many, the Trump presidency will push us the wrong way.

Friday, March 31, 2017

Podcast: Awkward Conversations around Disability

Ana Marie Cox interviewed Alice Wong and then myself about disability and language and being uncomfortable. Alice's interview is great!

I haven't listened to mine yet. Stay tuned ...

Thursday, March 30, 2017

Autism Society Celebrates ... Ben Affleck?

Celebrities are good for fund raising. Autism Society is backing "Aut Fest," an autism-related film festival. The good news: The latest anti-vax film isn't on the schedule that I can see. The bad news: Autism Society is banking on Ben Affleck bringing in the big bucks.

Affleck played The Accountant, an autistic hitman whose character depended heavily on multiple layers of damaging stereotypes about autistic people.

Read Kim Sauder:

Let’s start by looking at the character Christian Wolff (Ben Affleck). They present the character as an edgy, unique autistic character who is different from other autistic characters that people have seen on screen before. This is why he is
A white male, unlike Raymond Babbitt, that kid from Mercury Rising, or Hugh Dancy’s character in Adam… Oh wait.
The vast majority of portrayals of disability not exclusive of autism are of white men. This is problematic in that it erases a visual representation of the huge diversity within the disabled population.
An autistic savant, unlike Raymond Babbitt, that kid from Mercury Rising, or Hugh Dancy’s character in Adam… Oh wait.
I’m pretty sure that I’m not the only autistic person who wishes that Hollywood would put a moratorium on autistic savant characters. Savantism is rare and does not accurately represent the average lived experience with autism. In film and television the opposite is apparently true. Autistic people who are not savants are basically an endangered species.
Or read Alex Hagaard:
The Accountant most assuredly is an honest depiction of autism — but it is an honest depiction of what autism looks like through the eyes of humans who are allistic . . . that is, not autistic themselves. As such, it is a painful and often stereotypical rendering of a character who is constantly and explicitly signified as Other.

For the duration of the film’s 128-minute runtime, we are treated to the cold spectacle of a man whose human qualities are confined to a minimum. His face is uniformly mask-like; he exhibits no sign of a life outside the confines of his work (and of the plot); he doesn’t even bleed when punched in the face. A number of motifs do the unsubtle work of reminding the audience that Chris is not one of us.
I've been thinking a lot about Speechless. It's not perfect. No work of cultural creation is perfect, especially when engaging in complex intersections of identity and agency. But it starts and ends with trying to make sure disabled people finally take control of their own narratives, in so many ways. As I wrote for Pacific Standard, I think the tightness of the genre (family sitcom) helps. Similarly for Switched at Birth or Spring Break Zombie Massacre.

I'm sure there's an autistic-hitman movie that could similarly exploit the tightness of the genre to tell new stories about disability.

The Accountant isn't that movie. Ben Affleck as headliner is a sign of going for the bucks, going for things that make donors and parents happy, at the expense of the autistic community.


Let me know if other autistic writers comment.

Tuesday, March 28, 2017

Restaurant Photos without Consent ... again

There's a photo of an employee feeding a disabled woman in an Illinois IHOP which means it's time to resurrect two favorite How Did We Get Into This Mess? rules:
  1. Don't take pictures of disabled strangers without their consent.
  2. Don't share the pictures you shouldn't have taken to the internet without their consent. Their story is not your story to do with as you see fit.
Latest culprit: Keshia Dotson, who snapped a picture and is happily reaping the attention, as stories percolate around local news, always looking for an inspirational angle. I once wrote about a similar incident:
In objectifying this woman, as writer and disability activist Emily Ladau points out in a piece for the Center for Disability Rights, the stories all ignore the woman’s personal agency. “The woman is not helpless. She specifically requested assistance with eating,” Ladau writes. “She advocated for what she needed. The employee’s assistance was simply a kind acknowledgment of her request. [The comments] regarding the man are all to the effect of “bless his heart,” “what a hero,” “such a saint.”
One reporter led his piece on the Qdoba story with, “Faith in humanity, restored.” 
Real support
Then there are the legal and policy questions. Why is Qdoba not accessible to disabled patrons in the first place? No one should have to wait outside a door to be let in. And shouldn’t Kentucky provide appropriate community-based supports for this individual so a disabled woman can lead a more independent life rather than rely on the kindness of strangers?
Here I think the answers aren't that complicated. T. here seems to be a relationship between this husband and wife and the server in question. That's lovely. Ask for consent before posting.


I spoke to Dotson over FB messenger:

Me: did you ask their permission before taking the photo?

I did not, I honestly didn't even think about it. I just wanted to forward it to corporate so the server would be recognized for his customer service skills, I never dreamed that it would go viral like it did.

After it went viral, did you reach out to the disabled person if they wanted people to see them being fed? Or to the server?

I have not spoken to either, no.

A lot of disabled people are criticizing you for violating this woman's privacy. I wonder if you have any thoughts about that? Would you want such an intimate vulnerable moment shared without your consent?

No harm was meant, it was a gesture intended with the up most innocence. But I have to get back to work, thank you for your interest in the story.

Right. But those disabled people would like you to take that picture down or get consent to share it.


The picture is still up.

Once again: Do not take pictures of disabled people without consent. Do not share pictures you shouldn't have taken on social media without consent.

Coroner Blames Autism. for the death a Latino Autistic Student held Upsidedown

Anthony Corona died after being placed with his head between his legs for twelve minutes. In the aftermath, the coronor at least partially blamed autism for his death.
Following a physical confrontation with another student and after school employees' attempts to restrain Corona failed, the bus driver pushed the teen's shoulders down, forcing his head between his legs, for 12 minutes until he stopped breathing, a San Bernardino police report stated. He died in the hospital a short time later, officials said.
Authorities concluded the death was a homicide, which means "death at the hands of another, but not necessarily implying intent or culpability," states a coroner's report provided by the family's attorney Dale Nowicki. His death resulted from "positional asphyxia," meaning he was put in a position where he couldn't breathe for several minutes, according to the San Bernardino County Sheriff's Department Coroner Division and San Bernardino police Lt. Mike Madden. Corona's autism and mental retardation contributed to his death, a coroner's report states.
I'm looking for the actual report, but this trend of blaming a diagnosis, rather than the violence visited on the disabled body,  is both pernicious and pervasive. This kind of restraint is lethal far too often to far too many people, and in the aftermath, medical and law enforcement authorities fixate on the disability rather than the action (even should the action be justified). See both Ethan Saylor and Eric Garner for widely publicized examples.

More to come.

Monday, March 27, 2017

Trauma in Chicagoland

Post Traumatic Stress Disorder (PTSD) needs to be understood as disability for many reasons. First, it's a disability, requiring numerous varieties of interventions and accommodations. Second, it's incredibly common, so when we understand it as disability, it challenges our notion of normal, whole, or abled. These are lines we need to blur.

From Chicago Tribune, here's a new study on trauma and black women in Chicago.
A recent Northwestern Medicine study that examined the South Side neighborhood of Oakland found that 29 percent of the 72 African-American study participants have the disorder and an additional 7 percent exhibited a large number of signs that are part of a PTSD diagnosis. Researchers said they believe that points to a need for more mental health services and screenings in poor neighborhoods.
This isn't news, but more data is important as advocates work for better trauma-informed practices among government agents.

Of course, when Chicago got a million dollars recently to address trauma in the neighborhoods, they spent almost all of it on new cops.

Friday, March 24, 2017

Shock and Law: Tasers and the Cult of Compliance

The State of CT mandates the tracking of taser use by law enforcement, which is fairly rare across the country. We've got the 2015 numbers. From Connecticut Magazine:

A total of 650 reported Taser incidents involved 610 people. Of those subjected to Taser use in 2015:

83 percent were unarmed
53 percent were people of color
49 percent were under the influence of drugs or alcohol
33 percent were described as “emotionally disturbed”
13 percent were suicidal
Two died
When involved in Taser incidents, including instances when a Taser is drawn but a shock is not delivered, people of color were more likely to be shocked and less likely to be given a warning before being shocked than whites.

The state of CT found that 100% of these taser uses were justified, and that's where the problem lies. Such weapons are an important tool for law enforcement, but too often they are used not in lieu of lethal force (it's better to tase than shoot!), but in lieu of patience and conversation. The people who suffer from this the most are people of color, disabled individuals, and especially disabled people of color.
Policing the Police
McGuire says, in Connecticut, all the Taser investigations “have vindicated the officers and found no police misconduct.” But there are cases in which justification of Taser use is unclear, he says. “A few years back, in Middletown, a person who was in mental health crisis was [shocked] 34 times by three different officers, and that was deemed a justifiable use of force and ultimately the officers were exonerated.”
Accountability must be part of reform. Data serves accountability, so I'm glad they are counting.

Thursday, March 23, 2017

The Bipartisan History of Disability Rights

Yesterday I wrote on the Endrew F. v Douglas County decision from the Supreme Court. It's powerful and could make a real difference in special education in this country. In the meantime, though, even as the decision was being handed down, ADAPT (a direct action disability rights group) was occupying the Capitol Rotunda, chanting, and eventually being arrested. I wrote a piece about SCOTUS, Gorsuch, and ADAPT, while remembering all the ways that disability rights can and should be bipartisan.
For decades, Democrats and Republicans have come together to pass legislation and support regulations to make America more inclusive for people with disabilities. Not only did a Republican president (George H.W. Bush) sign the ADA in 1990 after it passed with overwhelming majorities, but the same congress and president easily reauthorized the Education for the Handicapped Act and renamed it IDEA. A Republican congress reauthorized the same bill under President Bill Clinton, in 1997. In 2008, President George W. Bush signed the ADA Amendments Act, passed by a Democratic congress, which explicitly expanded ADA protections to people with mental disabilities. President Barack Obama signed a law permitting some disabled people to work and save money without jeopardizing access to benefits, and another encouraging integrated work opportunities for disabled people. These were both passed by huge margins in the otherwise highly partisan 113th and 114th congresses.
Read the whole piece here.

Wednesday, March 22, 2017

Disability Day of Mourning - Washington D.C. - 2017

“Katherine Lavoie spent the last moments of her life with her husband pointing a gun at her. Olivia Clarence was four years old, and the last thing that will ever happen to her was her mother cutting off her air. Olivia’s brothers, Ben and Max, ended their lives the same way. They were three years old.”
Julia Bascom, executive director of the Autistic Self Advocacy Network, reads these words from a sheet of paper that she holds in steady hands. Her voice is quiet, but it carries through the meeting room of the National Transitions Youth Center, a small office building near Foggy Bottom in Washington, D.C. Bascom seems tall in her black dress, almost ministerial, as she leads a small congregation of mourners in a ritual of shared grief. It’s March 1st, 2017, the Disability Day of Mourning, and we’re about to recite the names of the dead.
I wrote for Pacific Standard on murder of disabled people and the way the victims are erased from their own stories, based on my visit to DC and the Disability Day of Mourning this year, plus the Ruderman Foundation white paper on filicide.

Tuesday, March 21, 2017

Julia the Muppet: Then and Now

Sesame Street moved Julia, a muppet whose character is autistic, from online only to the TV screen, and the story consumed a lot of my Twitter space. People are all happy she exists. People were happy when they announced her. I've seen lots of optimism, including from many, many, autistic people.

But that doesn't mean there aren't issues. One of my opening thoughts was that everything was focused on neurotypical kids learning about autism, rather than using Julia to help provide role models for autistic kids. Sesame Street has, of course, always been about diversity, and has always (well for a long time) included disability in their diversity.

But there are some issues, especially with the website, and we need to ask these questions: Does Julia speak or is she spoken for? Who is the subject here? Who is the expected audience?

Here's two things to read from writers who ID as autistic/neurodiverse AND as parents.
These are my stones. This website is not good. There’s too much that’s bad tipping the scales toward ableism and stigma. I hope Sesame Street listens. I think they can still fix this. Go back to the drawing board (literally and figuratively) with Julia, scrap everything else. Yep, scrap it. You made an autistic muppet, awesome. I love that she does happy flapping and loves to sing. Make her a real muppet. Make her part of the Sesame Street family. Let her talk instead of just talking about her. Let autistic kids see their reflection in her and feel that they are real people too, not monsters. Let them tell their own stories. Sesame Street has always known how to let kids be kids and they can do it again, and they can start now.
And now here is Biannon Lee:
Lee writes:
  • Articles are suggesting that in the full episodes, it is the adults on the show and the muppet friends who describe autism and Julia’s needs to others. I really want so much for children to be able to describe what autism means to them and it’s sad if it does turn out that the adults and other kids talk for Julia in the show.
  • The Sesame Street and autism resources on their website haven’t changed and are still just as icky as when autistic people criticised them in 2015. My advice is to steer clear of Sesame’s website.
And Lee concludes:
I am really hoping autistic Julia is someone we can love, who is accepted and valued for being autistic, and not someone who gets talked over by her friends and adults in her life.
So, it's good to see Julia on air, but plenty of ways in which Sesame Street promotes ableist narratives rather than resists them.

Monday, March 20, 2017

There Ain't No Good Eugenics

Adam Cohen is the author of Imbeciles, an recent, widely read, book on the history of eugenics in early 20th century America. It's a solid book that about a history that isn't well known, and I'm glad he wrote it (though I am not sanguine about the movie deal based on it, but that's not his fault and is a separate story). 

What I'm not glad about is his recent op-ed in the L.A. Times on "good eugenics," which seems to miss the lessons of the history he synthesizes in his book. His thesis in the op-ed seems to  be: Due to cheap gene editing, eugenics is coming, but that might not be bad? He writes:
As a practical matter, though, the genie is already out of the bottle, and it is unlikely we could stop embryo editing if we wanted to. New advances are coming rapidly, and gene editing is only becoming easier, faster and cheaper.
Again, that need not be a bad thing. Twentieth century eugenics has rightly been called a “war on the weak” — its goal was to stop people with conditions like Huntington’s disease from reproducing. Twenty-first century eugenics can enable people with the Huntington’s gene to have children without it. The new eugenics can be a war for the weak.
The whole thing reads to me like a pitch to sell more copies of his book, now out in paperback. I get it. I, too, am finishing a book and hope to sell many copies. But I think he's taken precisely the wrong lesson from the history - an ableist regime, whether based on forced sterilization or gene editing, will always reflect the oppressive biases of the society that constructs it.

America - like most of the world - kills, incarcerates, and abuses its disabled citizens, especially those who are multiply marginalized by race, class, gender, sexuality, religion, or other categories of difference.

Any eugenic gene editing process that is constructed in our culture will reflect the ableist reality in which they are created.

In the future, disability will code for poverty, for non-white, for non-Western, and the oppressions will intensify.

I am not an optimist, even as I rally to fight against this future.

Friday, March 17, 2017

The Tooles on St. Patrick's Day

I've been playing various types of folk music most of my adult life, but found the most steady work playing Irish pub music. "Pub" music is an act that requires mastery of a wide range of standards, played up tempo and often with maximum camp, but which also allowed for individual style and expression. We are a three-piece band that produces a lot of sounds, brings plenty of Appalachia (I'm from Nashville, my fiddler is from southern Ohio and went to school in rural Kentucky) and solid American rock (guitarist from near Milwaukee) into our mix.

I took a break to finish my PhD and have my first kid, but I've been playing with Kurt since 1997 or so. It's been a good couple of decades. Amy joined us about 5 years ago and is the perfect third.

It's going to be a good day. You can find us at:
Be safe, have fun, and we'll all stagger home in the morning.

Thursday, March 16, 2017

Coverage: Ruderman Report on Media and Filicide

Two stories this week on the Ruderman Family Foundation report on the media coverage of filicide of disabled people. The report, for which I was the lead author, found:
Approximately once a week, a person with a disability is murdered by a family member or caregiver. We have found that when these murders are covered, they are often called “mercy killings” which perpetuates the stigma and myth that the life of a person with a disability is not worth living and that it is a kind deed to end such a life. Such coverage simply must stop. It is dehumanizing and dangerously continues to stigmatize disability. We’ve found that the voices of the victims are nearly always erased to favor the perspectives of the perpetrators. This too must stop.
A disabled person is killed by their caregiver at least once a week. There are patterns in these cases. There are patterns in how we talk about them.

David Lohr, senior crime reporter for Huffington Post wrote "How Murder Victims with Disabilities get Blamed for their own Deaths." He did his own reporting on the Alex Spourdalakis case (a Chicagoland murder, with which we also lead the white paper) and framed the findings this way:
The study found that taking a life ― something typically not tolerated in society ― is sometimes treated as acceptable in the justice system when the victim had a disability. Killers are commonly portrayed as angelic caretakers who killed out of mercy, or who could no longer bear the burden and snapped. Those perpetrators often face less than vigorous prosecution, the study found.

“The message is that murder is a reasonable response to disability, and courts will treat you lightly if you murder a disabled child, parent or spouse,” David Perry, a disability rights activist and author of the Ruderman report, told The Huffington Post.

Vilissa Thompson, an advocate and licensed master social worker from Winnsboro, South Carolina, said there is an obvious discrepancy in how the law and the public treat parents and caregivers accused of killing someone in their care.

“When someone, especially a child, is killed, it is called a hideous crime, and there is an urgency to punish the person responsible,” said Thompson, a contributor to the Ruderman report who was born with osteogenesis imperfecta, also known as brittle bone disease. “But when it comes to the disabled kids, there is this gross level of excusing that behavior.”
In Paste, Annamarya Scaccia summarized the report, then published a Q&A with me.
Paste: That was the one thing that stood out to me—that none of the reporters had any thought to contact a person with a disability.
Perry: It goes against basic journalistic practices. And I think it’s because most journalists don’t see disabled people as an identity group and the disability rights community as a group you would reach out to. Journalists are just not instinctively picking up the phone and calling the Autistic Self Advocacy Network or the Arc or United Cerebral Palsy or whoever it might be. That needs to become an instinct for journalists across the country.
This is one of the lines I keep repeating. Journalists know how to report. We are supposed to go to all sides for comments and framing, but when it comes to disability, that happens pretty rarely.

Grateful to these reporters for covering our study. More work ahead!

Wednesday, March 15, 2017

What Can You Do With a History Degree? .... Pay Rent!

Dominican University, where I teach history, is a small tuition-driven private school. The classes are small. The students tend to be first generation college students. We're diverse - over 50% Latinx in the last few entering classes. We're relatively affordable, as small private schools go, and provide that intense, small-class, personal attention, that really can transform a person's horizons.

And yet, as students arrive, they are being driven by their own concerns, their family's concerns, and the wide array of career-oriented short-term pressures towards job training majors. And I have no problem with job training! I've just had way too many conversations with brilliant women of color, in particular, who say - I really love history, but my parents want me to major in accounting.

So, with permission, I'm sharing a few of Mikki Kendall's tweets on her experience as a history major in the job market (hey, support Mikki's patreon here! I do). I plan to show them to the next young woman in my office pondering her future. History departments everywhere should plaster them on the walls.

Moreover, it's not just history, it's the degrees that teach you to process information and then articulate your findings clearly. Honestly, my colleagues who teach in Business are completely dedicated to liberal learning, to making sure these kinds of broad skills are embedded in everything we teach. Our Business majors get great educations.

But there's just no reason a student should choose one from simple instrumental fear of the future, rather than follow a subject that really speaks to her.

Because history majors can pay rent by analyzing information and writing it up.

Tuesday, March 14, 2017

#CultOfCompliance - Teacher Cuts Autistic Boy's Hair without Permission

In Ottawa, a teacher decided to cut an autistic boy's hair without permission. For weeks, the teacher had been calling the parents of the boy, saying his hair was too long and he chewed on it. From the CBC:
The special needs teacher complained that Dominic, who has autism, was chewing on his hair and that it covered his face.
When Brandon [the mom] asked her son if she could cut his hair, the boy refused, saying he wanted to grow it out "to touch the ground."
Haircuts are super fraught. My son does not like haircuts. He also will not tolerate brushing hair or significant washing of longer hair, which puts us in a complex situation, but honestly not an unusual one for parents of kids of any degree of neurotypicality or neurodiversity. Every four months or so, we go to a barbers and we wait. He goes to the bathroom. He surveys the room. He picks a chair. He sits in the chair. He says, "big," by which he means the big clippers instead of the smaller buzzier ones or scissors. I kneel in front of him and hold his hands. We count together. It's a whole process. Parents and kids - neurotypical or neurodiverse - have a lot of these kinds of debates and decisions, and I feel pretty good about where we end up. He also likes the texture of his short hair, just not the process getting there.

I'm imagining, though, that a teacher cut my son's hair at one of the longer points, and the fury I'd feel. Is it assault under Canadian law? I dunno, but it's definitely actionable. I also think it's part of the Cult of Compliance, where kids are all expected to comply to norms, and neurodiverse ones are often coerced (as are kids perceived as non-typical, i.e. non heteronormative and white).
Since her son's hair seemed to be so important to him, Brandon decided to let it grow.
"I didn't think it's hurting anyone for him to grow his hair out, so when a teacher kept persisting that I cut his hair, I was like, 'I don't need to get his haircut. That's OK,'" Brandon said.
She was shocked when the teacher called her a few days ago, before her son arrived home, to tell her Dominic had given him permission to cut his hair.
"I know that my son would never say that it was OK, because he has asked me to never cut his hair," she said.
When her son came home there were thick chunks of hair missing from the sides of his face, as well as some cut from the back.
Brandon called the principal to complain.
"He's a teacher, not a hairdresser, and we didn't get any consent or anything," she said.
In a statement, the Ottawa-Carleton District School Board said the haircut was "an unusual practice" and that it had placed the teacher on "home assignment" while an investigation takes place.
A lot of folks responded to my tweet saying, assault! I bet not, alas.

Monday, March 13, 2017

ADAPT: Photos and Videos from Kenosha and Racine

One day last February, I embedded with an ADAPT protest - a decentralized nationwide direct action disability rights group - in Kenosha and Racine Wisconsin. PLEASE READ THE ARTICLE. Here are some images.

VIDEO: Adapters chant, "Up with attendant care, down with the nursing homes."

More Video: Ain't no power like the power of ADAPT and the power of ADAPT don't stop.

Friday, March 10, 2017

RESOURCES: Medicaid Per Capita Caps

Super useful fact sheet on Medicaid Per Capita Caps. It's one of the many threats in the Worlds Greatest Healthcare Bill of 2017 (no really that's the official name).

My article on how the Disability Community is fighting back.

Here's an image, but click the link above for an accessible pdf.

Thursday, March 9, 2017

Peter Singer, Milo, and Murray - The Slippery Slope Fallacy

Friends, we've been hacked.
In the ensuing debates about platforms and protests, which will be extremely complex and often uncomfortable, forcing us to choose between abstract principles, tactical effectiveness, and protecting ourselves and others. We're gonna need good tools, rhetorical as well as organizational, as we stumble forward.

One thing that I want to make sure is excised from the debates is the simple notion that slopes are slippery, that one thing naturally leads to another. We cannot assume that denying a platform to Milo, or Murray, or Peter Singer must naturally lead to denying a platform to others. It might! But we can't assume.

Therefore, I want to remind readers who will be thick in the trenches of these debates that the slippery slope fallacy IS A FORMAL LOGICAL FALLACY. Not all assertions that a slope is slippery are fallacious, as one can make a well-reasoned argument, but the simple assertion is a fallacy.

Don't fall for it, so to speak.

Wednesday, March 8, 2017

Berkeley Takes Down Videos over ADA Violations

Berkeley is claiming that they have to remove a lot of online videos because captioning them all would be too expensive.

To which I say: Please build accessibility into everything you do. Deaf people, in fact, have the right to learn. And please don't blame disabled people when your lack of foresight means you're in violation of the law.

Also, Inside Higher Ed - Berkeley is the mothership of the Independent living movement. There are disabled profs and organizations you should have, and could have, contacted for comment here.

Monday, March 6, 2017

Middlebury: Disruption is not Violence

Below you will find a letter from the president of Middlebury on the recent protests around the presence of Charles Murray. My basic take is that giggling GOP student groups have hacked the free-speech pieties of my generation. Those pieties were based on a pre-internet information culture, and perhaps still hold true, but they should be engaged rigorously not merely repeated as truths.

What troubles me about the president's letter is the loose conflation of disruption with violence. Here's a key quote:
I want to state that peaceful, non-disruptive protest is not only allowed at Middlebury, it is encouraged.
There's been a lot of disruptive protests over the past few years, from people shouting at Trump events to Black Lives Matter blocking highways. True protest is disruptive. To limit protest to polite non-disruptive action is to to take a position opposed to protest. Protest cannot be civil.

Protest can be non-violent though. To threaten people's bodies (I care less about threatening, say, Starbucks, as happened in Berkeley when Milo was blocked from speaking) is a good place to draw a line, and at Middlebury a professor felt very afraid, and that's a problem.

But disruption is necessary.

Here's the letter:


Dear Middlebury Community Members,

This is the first of what is likely to be a series of communications from me in the days and weeks ahead.

Many of us still are processing what happened inside and outside Wilson Hall and McCullough Student Center last Thursday. The protests and confrontations in response to Charles Murray’s appearance laid bare deep divisions in our community. The campus feels different than it did before. It will take time and much effort to come together, and what the future ultimately looks like may not be anyone’s ideal—at least not for a while.

Today I write on the topics of accountability and community.

Let me turn first to accountability. Because of the complexity of the events and actions that took place, we have initiated an independent investigation to establish a baseline of information. Once that work is completed, the College will follow a process of determining a course of action for each individual understood to be involved in some way in the events of last Thursday.  This will take some time.  Our process must be fair and just.  To be clear, I want to state that peaceful, non-disruptive protest is not only allowed at Middlebury, it is encouraged.  We all have the right to make our voices heard, both in support of and in opposition to people and ideas.  Our concern is acts of disruption and violence, where available means of peaceful protest were declined.

Separately, the Middlebury Police Department will investigate the confrontation that took place outside McCullough following the event, which we believe involved individuals from both on and off campus. We will cooperate fully in that investigation and encourage all members of our community to do the same.

Let me turn next to community.   Creating true community is hard work, and yet that work is essential and is our collective responsibility.  This week, we will mark the beginning of opportunities for reflection and engagement.  We have already heard from many community members on all sides of the issues and that has been deeply encouraging. Existing groups on campus have written to help us understand what the community is feeling and might need going forward.  We have much to discuss—our differences on the question of free speech and on the role of protest being two of the most pressing examples.

In addition, I am extending an invitation to everyone to submit community-building ideas for consideration.  These ideas may be modest or bold.  We will work with existing groups of faculty, staff, and students to collate these ideas into plans of action over the next semester and beyond.  Katy Smith Abbott, Susan Baldridge, Miguel Fernandez, and Andi Lloyd will provide information about how to share your ideas in a subsequent message.

This was an extremely difficult episode, especially because in the last year we have worked so hard to affirm that Middlebury is committed to unlocking the potential and brilliance of every student, no matter their race, class, sexual orientation, religion, disability status, or any other personal characteristic. If you are here, it is because you earned your way here, and you belong.   We are also committed to upholding the right to speech, even unpopular speech, especially in times of division or uncertainty. If colleges and universities cannot serve this role, who can?

I urge us all to keep listening and connecting, and am myself in active communication with students and faculty on all sides of the issue. I want to acknowledge the anger and frustration that many people feel. There is hard work ahead for all of us:  learning to be accountable to one another, and learning to stand in community with one another.  We must affirm our shared values and goals and hold each other to them, and we must listen differently, helping others to be fully heard and seen.

My faith in our collective ability to grow into a better place is unshaken.  I look forward to the many conversations we can and must have over the coming months.

Laurie Patton

Bad Disability Journalism: NBC Forgets to talk to Autistic People

The dad of an autistic man founded a carwash for his son to work at, and has employed lots of other autistic people. NBC did a feature in their "Inspiring America" series.

No autistic person is quoted in the story. Instead, we get this:
The repetition involved in the work is actually perfect for those on the autism spectrum who gravitate toward repetitive behavior. "Their attitude is strong," said D'Eri. "That goes to the consumer and nothing can beat that."
Now, four miles down the road, a second Rising Tide Car Wash is under construction. Despite not having a single ad, they've already received over 700 job applications.
D'Eri's efforts to help those with autism in his community started in his Parkland, Florida community but has since gone global. Through Ted Talks, seminars, and even a testimony to the United Nation, D'Eri is not only uplifting autistic people, but shifting the way people view them and their capabilities.
As for Andrew — he's a new man. "He's motivated," his father said. "And motivation is something Andrew never had but is key to life, right?"
It's the classic example of how not to cover these "inspiring" stories.

Friday, March 3, 2017

Murder of Disabled People by Caregivers

Every week, at least one person with disabilities is murdered by their caregivers. Working with a small team, including - The Ruderman Foundation, researcher Kathleen Seidel, Vilissa Thompson, Timotheus Gordon Jr., and Zoe Gross with Autistic Self Advocacy Network - I led a study of 5 years of media coverage of the murder of disabled people.

We found:
  • Outside of longform careful reporting, reporters simply don't talk to disabled people about the murder of disabled people.
  • Phrases like "mercy killing" remain far too prevalent.
  • Sympathetic coverage of the killers, likewise, keeps happening.
Still more to come on this work over the next few weeks.