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

C2E2 - COMICS!

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.
READ IT ALL PLEASE!

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.
READ THE WHOLE INTERVIEW.




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.