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).