Wednesday, June 28, 2017

What Happens When You Cut Medicaid? - Texas

New from AP today on the time Texas cut 350 million from Medicaid:
Some Texas children with special needs like Addison have lost critical services since the state implemented $350 million in Medicaid cuts to speech, occupational and physical therapy in December. In Texas, reimbursement offered to providers fell up to 50 percent for certain therapy procedures, said Rachel Hammon, president of Texas Association of Homecare and Hospice. Clinics closed and therapists quit.

The Texas cuts are separate from Republican proposals now before Congress, which academics say could cut federal Medicaid spending as part of a law to replace the Affordable Care Act. But the fallout could eventually be similar if some form of what’s been approved in the U.S. House, and is under consideration in the Senate, becomes law, said Elizabeth Burak, the senior program director of Georgetown University’s McCourt School of Public Policy’s Center for Children and Families

The Texas Legislature voted in 2015 to cut the state’s Medicaid reimbursement for pediatric acute therapy services, which effectively capped how much providers can be paid. Proponents of the cuts argued that Texas’ previous reimbursement rates were too high, sometimes even encouraging fraud.
In related news, my piece on the history of Republican attacks on Medicaid was picked up by the Dallas Morning News. My inbox has been lived.

Monday, June 26, 2017

Block Grants: A History

I have a piece today at The Washington Post about the history of Republicans trying to gut Medicaid, why they failed, and why they might win this time. 
As detailed in a 2013 report by the National Council on Disability (a nonpartisan, federally funded advisory council) on Medicaid block grants and their effect on Americans with disabilities, the first attempt to turn Medicaid into a block grant came in 1981, in Reagan’s first year in office. It made it into a big omnibus budget bill, but was stripped out in a congressional committee. House Speaker Newt Gingrich (R-Ga.) actually got block grants passed in 1995 as part of his “Medigrant” proposal, but President Bill Clinton vetoed it (with strong backing from health policy experts), and it was dropped from the subsequent compromise bill. President George W. Bush and the Republican congresses of 2003 and 2005 could have passed block grants at any time, but sustained resistance from advocacy groups, Democratic leaders such as Rep. Henry A. Waxman (Calif.) and Edward M. Kennedy (Mass.) and the legislative distractions of forming Medicare’s prescription drug benefit kept the bill from advancing.
 Moreover, at the time, many Republicans wanted to find bipartisan solutions whenever possible. Henry Claypool, who has been working on Medicaid policy in and out of government since the 1990s, told me that the Deficit Reduction Act of 2005 did include some Republican changes to eligibility, but also expanded support for home- and community-based services in ways that have helped many disabled Americans.
Today, everything has changed. House Speaker Paul D. Ryan (R-Wis.) has been proposing block grants since 2010, but he had no chance to get them enacted under President Barack Obama. Now, he and McConnell have co-opted the legislation intended to fulfill GOP promises to “repeal Obamacare” (which would be bad enough) as a way to sneak through decades-long assaults on the basic American promise of Medicaid.

This time, the phrasing is “per capita caps.”

Thursday, June 22, 2017

Juice and Stereotypes

Zuma Juice made the worst piece of disability stereotyping commercial I've ever seen. The disability community let them know what was going on, and I wrote it up for Pacific Standard.
This ad trades on two of the most pervasive stereotypes facing disabled folks. First, that their disability is attributable to poor lifestyle choices—i.e. drinking soda and eating junk food. Second, that lots of them are faking and are just lazy. The choices in this ad reflect deeply held stigmas about bodies, health, and disability. As we've reported at Pacific Standard, people working to cut disability benefits tend to blame disabled people for their disabilities, while simultaneously accusing many people receiving those benefits of having perpetrated fraud. Moreover, the belief that lots of people are just pretending to be disabled leads to public accusations and humiliation, even violence.
See more on the ad here.

Police Violence, Race, and Stigma in Chicago

I was recently on a boat with a friend who said - I never read Twitter or Facebook any more, but I do check your blog for new stuff. So when I publish new pieces, I'm posting little excerpts here. Hi Melissa! :)

How do you find my stories? What's the role of the blog for you today? Let me know ... maybe on Twitter.


My first feature for The Guardian is on the intersections of racism, poverty, and trauma in Chicago, and the black disabled leaders working to make a better city. They are fighting police violence, working to educate their communities on disability, and it was an honor to talk to them and write this:
Chris lives in Ogden Park in Englewood, a neighborhood on the South Side of Chicago, where I drove to meet him. As the hot afternoon waned, we spent an hour in the shade of the sycamore trees, sitting on a slanted wooden bench, talking.
He was restless. He sat. He stood up. He paced and smoked. Piece by piece, Chris revealed his theories about disability, race, poverty, policing and the vicious cycle in which Chicago’s disabled black residents have found themselves.
Chris Huff is a member of Advance Youth Leadership Power(AYLP), an advocacy group organized through Access Living, one of Chicago’s leading disability rights organizations. They have taken on a complicated twofold mission.
First, they are trying to teach those concerned about police conduct, including the US justice department (DoJ) taskforce, to see the disability component in the broader narrative of an abusive Chicago police department – especially as a third to half of people killed by police have a disability. Second, and perhaps even more critically, these activists are hoping to help their own communities perceive the links between disability and racial and economic justice.

Monday, June 19, 2017

Privacy Laws: Substitutes and IEPs

In my recent piece on criminalization of autistic children, I wrote: 
The prosecutor's office told me they could not discuss the case because Ashton was a minor. The school district told me they could not discuss any individuals because of federal privacy law (namely the Family Educational Rights and Privacy Act, or FERPA), and did not respond to a follow-up email asking to discuss the conditions in the district for children with IEPs and 504 plans more generally. The Student Press Law Center notes that privacy laws are often used to protect institutions from having to comment to the press, rather than protecting individuals, and that seems to be the case here.
I'm going to be following up on this. One issue that emerged in the interviews and the comments related to whether substitutes can see IEPs/504s. Schools frequently defend their poor responses to behaviors by saying subs didn't know ... but they must know.
Your school administrators may incorrectly believe the IEP is confidential.
If so, the administrator thinks he cannot release it to teachers and other staff members. This is not true.Schools can release confidential information about your child to anyone at school who has a genuine need for that information.
From the Federal Special Education Regulations –
34 CFR 300.323 (d) Accessibility of child’s IEP to teachers and others.  Each public agency must ensure that-
(1) The child’s IEP is accessible to each regular education teacher, special education teacher, related services providers, and any other service provider who is responsible for its implementation; and
(2) Each teacher and provider described in paragraph (d)(1) of this section is informed of-
(i) His or her specific responsibilities related to implementing the child’s IEP; and
(ii) The specific accommodations, modifications, and supports that must be provided for the child in accordance with the IEP.
We need to reclaim privacy laws and use them to protect individuals, not institutions.

Friday, June 16, 2017

Disability Myths in Higher Ed

Too many college professors treat requests for reasonable accommodations as either students trying to get away with something (extra time, for example, on assignments) or signs of poor moral character (toughen up!). I would like such statements treated with the same care as casual racism, classism, sexism, and other forms of bigotry. Which isn't to say we always handle those well.

Three professors have written a terrific essay for The Chronicle on attacking these "disability myths."
We live in a time where the discourse of diversity is practically a bumper sticker found in faculty orientation packets. Yet the presence of disabled students in our classrooms is too often presented as an anomalous burden, a challenge to be met. Its overarching goal? To normalize disabilities by setting them up as simple problems to be easily overcome.
We saw a good example of that in a recent advice essay in The Chronicle — "Why I Dread the Accommodations Talk," by Gail A Hornstein. While her efforts as an ally of disability rights are certainly appreciated, her rhetoric — labeling disability conversations with students as something to dread — is dangerous, not just for the students it minimizes, but for the "advice" it offers to faculty members.
Disability activists and theorists such as Simi Linton and Margaret Price have been working for years to combat and dispel calcified and problematic tropes about disability. Unfortunately, Hornstein’s essay served to perpetuate them: the myth of overcoming disability (or what Hornstein labels "resiliency"), the trope of the able-savior, and the notion that disability itself is inherently deficient and, thus, runs contrary to academic life. We’d like to explore each of those in turn and then share some of our own suggestions for handling "the accommodations talk."

Thursday, June 15, 2017

Seanan McGuire - INTERVIEW

I have a new interview up with Seanan McGuire, the awesome speculative fiction author. We talked about her new portal fantasy, Down Among the Sticks and Bones, her genre-queering approach to writing, and, of course, My Little Pony.

When you were a kid, what did you read, and what did you feel was missing in the fantasy that you consumed?
I grew up on welfare, which I bring up a lot because it's really relevant to what I used to read. Growing up super poor, you read what your mom brings home because you can't get anything else. My mother would come home from flea markets and yard sales with these gigantic boxes of whatever people were getting rid of. She was bringing books with unicorns and space ships on them for her nine-year-old, so I was getting science fiction that was 20 years out of date and I grew up on that.
There were virtually no women [in those books]. What I noticed was that only boys got to have adventures and go out and fight dragons or befriend dragons. Then a woman would show up and she would, 90 percent of the time, be a sexual reward for the guys for going out and having these adventures that were never offered to her in the first place. I didn't want to sit at home and then have sex with the hero when he came back from going on this grand quest.

Tuesday, June 13, 2017

Segregated Proms are Segregated

A segregated DC school throws a segregated prom and applauds itself for its segregation. Everyone in this story has nothing but good intent. They are working hard for their students. But this is the wrong attitude.
“If we had these students in a conventional school, they’d probably sit in a corner and not engage, or they’d be made fun of,” says AimeĆ© Cepeda, principal at River Terrace. “Here, they get to celebrate with their peers.”
That's a justification for intensifying segregation, as David Rosenblatt said:
Disability segregation does sometimes happen in our educational system (and housing, workforce, etc.). We should always be working to turn it back towards inclusiveness, not celebrating our segregation.

Monday, June 12, 2017

Pacific Standard: Why American Keeps Criminalizing Disabled Children of Color

I have a longform piece for Pacific Standard today. I've been working on it for about 6 weeks. Please read and share throughout your networks, if you are so inclined. TWs for abuse of children by authorities.
"Why would a school cop in Florida throw a slender, autistic fourth-grade student to the ground? You might assume that the child must have presented some kind of serious threat to himself or others, that other skilled experts had already tried de-escalating interventions, and that there was no other choice. Such was not the case for 10-year-old Seraph Jones. This spring, a school cop threw him down and held him against the ground with sufficient force to cause rug burn.

It turns out that Seraph's worst day at school—so far—happened because he was clicking a key too loudly, then ended up trapped in a situation where he had no good way to safely calm down."

Friday, June 9, 2017

Saint Wars and Russian Cinema

My scholarly work centers around a simple premise: When you make a saint, you gotta tell a story. The same holds true for when you move a saint, create relics, place relics in new locations, develop new festivals. These sacred acts can have enormous cultural and political consequences, but only if you tell the right story.

In Russia, pro-authoritarians have been resurrecting (pun intended) the notion that Tsar Nicholas II was a saint and martyr due to his execution by the Communists. That's one story. Now a major Russian motion picture shows him in love with a ballet dancer (which is true), and one not appropriately beautiful or Russian-looking enough for the authoritarians. Controversy follows.

New York Times reporter Neil MacFarquhar has a fabulous feature on the controversy. Here's an excerpt.
That has done little to douse the hostility from the Russian Orthodox Church and its adherents. Some want the movie banned, while the most extreme have threatened to torch movie theaters that show it.
The main objection from the church is that because Czar Nicholas II and his wife were canonized in 2000, the movie is an insult to the faithful, which is a crime in Russia.
“This film represents, in my opinion, the apotheosis of vulgarity,” Bishop Hilarion, the head of the church’s external relations department, said on television, noting that the director had invited him to view a rough cut. The bishop conceded that there had been some manner of love affair, although he dismissed it as a youthful infatuation.
Even as Mr. Uchitel acknowledged that the movie contained elements of fantasy, he questioned the historical interpretation used by his religious critics. Nicholas II became a sainted martyr because of the way he and his family died — in a hail of bullets fired by a Bolshevik firing squad — not because of the way he lived.
“Their main concern is that since he was shot with his whole family, and thus became a saint, he could not have had any affairs,” Mr. Uchitel said. “On the contrary, it is totally correct to show him in this human way.”
Making saints requires stories. As always, READ THE WHOLE THING.

Thursday, June 8, 2017

Comey and the Meddlesome Priest

Former FBI Director James Comey and Senator Angus King (I-ME) both referenced the murder of Thomas Becket by the oblique order of King Henry II. Comey is before the Senate Intelligence Committee testifying about President Trump, Russia, spying, and possible obstruction of justice.

Here's a clip with video.


King: When a president of the US in the oval office says something like I hope or I suggest or would you, do you take that as a directive?
Comey: Yes, yes, it rings in my ears as "will no one rid me of this meddlesome priest?"
King: I was just gonna quote that in 1170, December 29, Henry II said "who will rid me of this meddlesome priest" and the next day he was killed, Thomas a Becket, and it's exactly the same situation. We're thinking along the same lines.

Medieval history is always with us. I had a similar thought in early March.

Wednesday, June 7, 2017

Zuma Juice: Drink Our Product or Be Fat and Disabled

I'm on vacation this week, but felt the need to post about this:

I was alerted by a twitter friend to an ad from a juicing company that shows two slender women making some kind of juice. The woman on the left is using a blender and, ew! On the right, slender woman number two uses this Zuma thing to make juice more easily!

And then a woman in a wheelchair, not slender, with a huge vat of cheese puffs and a giant mug of soda, rolls up. They begin fighting over the Zuma juice. The ad sets the fat disabled junk food eater against the thin Zuma-drinking women. It's meant to be comic. It's wholly unacceptable.

UPDATE: Here's the story, as I now understand it: Zuma Juice, by their own statements, wanted to compare the health conscious people who juice with a caricature of a health unconscious lazy slob - so they gave her junk food, soda, a big vat of cheese puffs, and a power wheelchair. In their "apologies," they indicate that they would have used a hover board if they had them, but that since many power wheelchair users don't even need them (just being lazy, in their minds).

The idea that disabled people are lazy and self-damaging is widely prevalent, linked to all kinds of stigma, from social shaming, police violence, and attacks on Social Security.

Zuma Juice rarely tweets.  You can contact them here.

Update with tweets (thanks to Karrie Higgins for pointing these out): More context with screenshots from various interactions with them.

Images captioned here.

Monday, June 5, 2017

Gig Economy and Disability - AirBnB

A few weeks ago I wrote for Newsweek about Uber and its poor record on providing transportation for disabled folks.
In the gig economy, profits pour in based on dodging the requirements of the regulatory state that enforce equal accessibility, pay, lack of discrimination, and basic economic justice. When vulnerable populations complain, they are brushed off with token responses and denial of legal culpability. 
Here's another example:
Ms. Garcia, who is from El Paso, was planning a May trip with her family to the Chicago area and wanted to know if the places she was considering could accommodate her needs as someone with muscular dystrophy. Unfortunately, she said, her questions appeared to scare off at least two potential hosts.
She said she feels that if she had not mentioned her disability, “they would have rented to me, no issue.”

Ms. Garcia is not alone in feeling that way. Other users have reported similar bias, and a new Rutgers University study — based on more than 3,800 Airbnb lodging requests sent by the researchers — suggests it may be common: Travelers with disabilities are more likely to be rejected and less likely to receive preapproval, or temporary clearance, for a potential stay, the authors found.

Hosts granted preapproval to 75 percent of travelers who made no mention of a disability, according to the study. That rate fell to 61 percent for those who said they had dwarfism, 50 percent for those with blindness, 43 percent for those with cerebral palsy and just 25 percent for those with spinal cord injuries.
1) Schur, the author of the Rutgers study, does great work.
2) This is the same phenomenon as with Uber. Dodging the regulatory state leads to discrimination.

Thursday, June 1, 2017

Minnesota vs Illinois Spending on Developmental Disability

This morning, for no particular reason other than I'm moving to Minnesota in 8 weeks, I've been playing around with the "state of the states" chart creator for spending on Intellectual and Developmental Disability. I've loved my time in Chicagoland. It's packed with amazing advocates and leaders, but they are fighting against some pretty serious structural headwinds when it comes to disability rights and services. 

Here's some data:
Chart showing MN spends $6.95 per $1000 of personal income, IL spends $2.72
Other stats:

MN places 98% of its community funding in 6 or fewer person homes. Illinois, just 58.1

93% of all MN placements are in 6 of fewer person community living options. 48.2% for Illinois.

United Cerebral Palsy does an annual (I think) report on the best states for inclusion. The latest has a lot of details which I'll explore later. I actually don't think all their metrics are optimal (Arizona is ranked #1, and I'm skeptical for various reasons). But they do provide some useful overviews. For example, MN is ranked 12, the ranking low only because of a waiting list. It needs to grow by 20% to meet need.

Illinois is ranked 47. The entry reads:
Illinois has 7 large state facilities housing 1761 Americans at a cost of $155855 per person per year.
Illinois participates in the National Core Indicators, the premier quality assurance program, and reported their 2015 NCI survey data.
Illinois has a waiting list that would require the program to grow by 101% on average to accommodate the need
Minnesota will surely have its own problems for me to rage against. I'm sad to leave my allies and friends and colleagues and students behind. But I do like these numbers.

Wednesday, May 31, 2017

Make Vinland Great Again

The Portland killer posted "Hail Vinland!!!" a few days before his rampage. For the Washington Post, I argue that this fetishization of an imagined Viking pure white past presents a huge challenge to historians and other humanists.
"History has never just been “the past.” As a historian, I study the way that groups have always tried to assert control over their story, seeking to mold legend, myth and reality into a useful narrative about identity and destiny. Stories like this have power, and we’d be foolish to ignore the threat.
As we mourn the martyrs in Portland, care for the wounded and support the women who were initially targeted, we shouldn’t ignore the danger that racist appropriation of the medieval past presents. American white supremacists want to make Vinland great again, laying out an imagined past in which Vikings are the rightful conquerors of North America, locked in eternal battle with the Skraelings, the Viking slur for indigenous people. We must inoculate ourselves against this hate by telling a better story, one that recognizes the many errors of our past, but also lays out a vision for a more inclusive future."

Tuesday, May 30, 2017

Flying Coach

I used an extended airline metaphor to talk about limitations of "choice" in today's piece at Pacific Standard, then tweeted with an @Delta in the promo tweet. Oops.

But I liked my metaphor.

Students Are Not Customers

NEW at Pacific Standard. Please click over and share!

Betsy DeVos and the GOP more generally say that we need to treat students like customers. Three responses.

1) What's so great about being a customer if you're not a billionaire?

2) The student's relationship to their educational institutions and the people who work there cannot be characterized as simply transactional.

3) When students are treated as customers, as Tressie McMillan Cottom show in Lower Ed, the extractive nature of the industry doesn't serve them well.

Also I wrote the first draft in an airport lobby:

"Education can be an engine of social change, a vehicle toward equality. McMillan Cottom makes it clear, though, that the wrong framing, policies, and financial models can turn education into an engine for inequality. To me, DeVos' false insistence on "choice" and on students as "customers" drives us toward the latter outcome. As a billionaire, she's going to fly in a private plane or at least in first class. As a white, cis-male, middle class professor and writer, I get a cramped middle seat in the back. More vulnerable Americans, meanwhile, will be left behind entirely on the ground."

Friday, May 26, 2017

Neil Gaiman on Syria - "They'd Like to Go Back."

For some reason Sara Benincasa has convinced Neil Gaiman to do a live reading of the Cheesecake Factory's menu if they can raise $500,000 for refugees, sending the money to the UNHCR. I love Neil's voice. I love the way he reads. I can think of many things I'd like him to read other than that menu, but hey, RAISE THE MONEY!

A few days ago 68 children, and over 110 people total, were killed in a bombing in Syria. It happened after the Manchester bombing and, of course, received relatively little coverage. Each horror is a horror, but I thought of those dead children in two very different parts of the world, and I wept a little that morning.

When I interviewed Gaiman for my American Gods essay, I spent awhile asking him about Syria and refugees, but couldn't fit it into the piece. But it moved me, so I offer it to you here (edited slightly to make sense as paragraphs):
The last time I saw figures, which was before the latest round of madness, there were over 6 million people had fled Syria, and more were internally displaced. We’re 6, 7, years into a nightmarish civil war. 
People should know that each of the refugees, each of the people who have made it out of Syria, has gone through a nightmare in order to get out. Making their lives worse helps nobody, making their lives worse is inhuman.

The UNHCR [UN Refugee Agency] was never built to handle a world in right now there are more displaced person than there were even at the end of World War 2. It was set up to be there for refugees, for local crises, in the assumption that it normally takes about 1 to 2 years in order for people to go home.
The other thing that people should know is that they want to go home! They like Syria. They love Syria. If there were a civil war in America … and there was no food and people were shooting at you for sport and you decided to get out. What you’d like to do is come back again, because it’s a nice place and your home.

They really just want to stay there [in Syria] and eat and educate their children which no one has been able to do for 6 years in Syria. They’d like to go back.
DONATION LINK IS HERE. Support the UNHCR if you can.

Thursday, May 25, 2017

Disability Stereotypes Aren't Cute Marketing Tools

This is not a big deal requiring massive internet outrage spirals, but I do want to make this point very clearly: Disability stigma and stereotypes aren't funny memes you get to use in marketing. OCD, for example, is a serious condition that can play a major role in the structure of the lives with people who have it. Stigma about OCD is not trivial. Your "detail oriented" nature is not OCD.

Which brings me to this:

Image Description: Two male Tufts students walk by a big elephant. The headline reads: Do you have Jumbo-sized OCD? Do you sweat the small stuff? Then there's an ad for production managers for Communications at Tufts, reading in part, "University Communications and Marketing is looking for production managers. If you are totally Type A and care about getting the details 100 percent right, this could be just the opportunity for you."

Source: Linked In post from a Tufts Communication manager, now removed.

I emailed the author. He wrote:
Thank you for your message. I sincerely apologize for this and the offense to folks who suffer with this or any other disability. The last thing I would want to do is to hurt anyone who already suffers from or knows someone with a disabling condition. In my hope to garner attention and excitement to this job posting, I didn’t think about how it sounded.  Upon internal and external feedback, I now understand how I sounded and regret offending or hurting anyone.  I have removed the post and will revise the description for the position. This lack of sensitivity is entirely a reflection on me and not a reflection on Tufts University, which has a well-earned reputation for respect toward people from all backgrounds.  Here is the Tufts non-discrimination and separate ADA policies, which includes the university’s support for recruiting and hiring people with disabilities:

Wednesday, May 24, 2017

Inspiration Porn Watch: Mom Gets Degree, Disabled Son Erased

A classic piece of inspiration porn. A disabled young man wants to go to school. The school has no way to help him, so his mom takes him to every class. School rewards her with her own degree, and that story overshadows the following.

  • 1) Mom was required to help the son instead of him having appropriate accommodations provided for him.
  • 2) The son finished school and it was HIS BIG DAY.
But now everyone is just talking about the great mom.

Inspiration porn buries analysis of ableist societal structures under a mountain of awwwwwwww.

Monday, May 22, 2017

Lead Poisoning: Environmental Justice, Economic Justice, Disability Justice

Before Flint's water crisis hit national news, I often wrote sentences that read something like this: lead poisoning is the most critical disability story that not enough people are talking about. Then Flint's crisis became visible, and suddenly people talked about this issue a lot more often, but mostly just about Flint. 

Lead poisoning is a national crisis. It is a factor of environmental racism and classism. It's not a coincidence that poor black neighborhoods are so subject to this problem. In the disability rights movement, we need to adopt the mantra that environmental justice and economic justice are necessary for disability justice. And, of course, vice versa.

Vann R. Newkirk III, at The Atlantic, has written an outstanding long read on "The Poisoned Generation," on lead and other toxic exposure for poor black families in New Orleans and the lawsuits seeking recompense. Newkirk writes:
For people living in precarious financial, environmental, and social conditions, black skin often carries with it a life of additional traumas. Strata of segregation and exclusion manifest in the most fundamental factors of life—from the air people breathe to the water they drink—and even when they don’t kill outright, they often exacerbate existing issues. For those in the poisoned generation and beyond, blackness is a tightrope, and lead poisoning is just one of the ways to fall.
I strongly recommend reading the entire piece and getting up to speed on these issues.

Friday, May 19, 2017

#CultOfCompliance: Tasing and Handcuffing Fails to Stop Meltdown

Yosio Lopez is a 7 year old boy with ADHD and other emotional disabilities in a Dallas school. Sometimes he has behavioral meltdowns when overstimulated and an aide helps him through the process. 

As reported on CNN:
Yosio Lopez was handcuffed, Tased and bruised by Dallas Independent School District (DISD) Police after the boy started banging his head against a wall in class, the Lopez family lawyer, David Ramirez, told CNN.

He has experienced similar outbursts in the past but has always had a trained school aide nearby to help calm him down.

Last Tuesday, the aide wasn't there and Yosio didn't have his "safe place," Ramirez said.

The boy told his mother, April Odis, that he was put on a desk with his arms cuffed behind his back while the school principal put her elbow on his neck and choked him to restrain him, the family lawyer said.
He was taken to a mental health facility and forcibly institutionalized. He and his mother were kept separated for two days under the claim that he was a danger to himself and others.

So here we have a child who becomes distressed and bangs his head against a wall. That is, indeed, a moment for intervention and then post-incident assessment of the triggering behavior - so as to fix the context, not the child. Instead, the school (allegedly) creates a traumatizing situation, then intensifies the trauma through temporary medical incarceration.

Thursday, May 18, 2017

Terence Crutcher's Killer Acquitted: The Disability Context to the Killing

Betty Shelby, a police officer, shot and killed an unarmed black man who was complying with orders. There's video. Yesterday, a jury acquitted her of all charges.

There's lots to say here and others are writing importantly about the case, but I just want to focus on the disability issues. Terence Crutcher had a prosthetic eye and hearing loss.
  • Video of his sister talking about his disability.
  • Transcript of the relevant section
    • Tiffany Crutcher (5:31): That's their side of it, and I just don't believe that. And one thing that people don't know about my brother, my brother has a very severe hearing issue in his right ear and a prosthetic eye. And I know my brother was scared, and people don't know that. All they know is that he's a bad dude, but my brother was disabled, and he was just trying to get his life together. So I can't say that's true, I was not there at the scene. But you know these things tend to be scripted, case after case after case, he didn't comply. They didn't comply. But the video tells it all. His hands were up. And that's what we are fighting right there. The fact that everybody saw his hands up and at that moment there was no need to execute him at all.
A third to a half of all people killed by police are disabled. Most of them are multiply marginalized, generally by race or class. If you fight for disability rights, you fight against police violence.

Wednesday, May 17, 2017

Arnaldo Rios - His trauma matters

Arnaldo Rios is the autistic Latinx individual who was shot at by a cop when he was sitting still in the street holding a toy truck. The bullet struck Charles Kinsey, his therapist, who was lying on the ground next to Rios raising his hands in the air. Kinsey has recovered physically. Rios is now institutionalized as a result of the trauma.

The cop who shot Kinsey and shot at Rios was charged with attempted manslaughter, but initially just for shooting Kinsey. Rios' experience was erased from the charging documents.

That's been fixed.
After months of investigation, prosecutors concluded that Aledda was not justified in shooting from more than 150 feet away. Among the reasons: Other officers had already radioed out that Rios did not have a weapon, and two cops within 20 feet did not fear for their lives.
In arresting Aledda, prosecutors initially charged him with one felony count of attempted manslaughter and one misdemeanor count of culpable negligence. During the Friday hearing, they officially filed two felony counts of attempted manslaughter, one for Kinsey and added one for Rios. The autistic man was not hit, but the shot fired at him “could have resulted in death,” according to the formal charges.
Emphasis mine. See more coverage of the case in the site tags.

Tuesday, May 16, 2017

Public Writing Workshop

I'm heading to Macalester College to teach a public writing workshop today. Hey, I could come to your college or university and teach one! I offer them to both faculty and graduate students, or both together!

Image Description: A flyer with pictures of me and some keen stock photos. Accessible info
at the "Speaking" page above.

Monday, May 15, 2017

RESOURCES: Eugenics and Institutionalization in Wisconsin History

I am giving a talk today at the Wisconsin Historical Museum. A few resources:


Images from Reske's article: 1) Men with pro-eugenics signs. 2) Women posing with gambling machines.

How do we reckon with this history?

Resources assembled with assistance from Kit Mead, my RA for this project.

Friday, May 12, 2017

Trump and Mental Health Discourse, Part 4392

So Comey said Trump is "crazy," but before that George Will said Trump is "disabled" by Hubris. Will, of course, is the famous father of a man with Down syndrome, so this is particularly disappointing.

One of my critiques of the mental health discourse is that by all accounts Trump has spent his life acting in perfectly consistent ways and has been incredibly rewarded for it. He's always been a liar. He's always been an abuser. He's still a liar. He's still an abuser. This is not a narrative of progressive mental health transformation.

Evan Osnos, with the New Yorker, has more on hubris as disability.

First "Hubris syndrome:"
In February, 2009, the British medical journal Brain published an article on the intersection of health and politics titled “Hubris Syndrome: An Acquired Personality Disorder?” The authors were David Owen, the former British Foreign Secretary, who is also a physician and neuroscientist, and Jonathan Davidson, a professor of psychiatry and behavioral sciences at Duke University, who has studied the mental health of politicians. They proposed the creation of a psychiatric disorder for leaders who exhibited, among other qualities, “impetuosity, a refusal to listen to or take advice and a particular form of incompetence when impulsivity, recklessness and frequent inattention to detail predominate."
Although they say that the Greeks warned as about this, I think the lesson of the Greeks is that hubris is a core aspect of human neurology, not a pathological abnormality.

Second, does it apply to Trump? The creators aren't so sure:
When I asked Owen if Trump meets the threshold of hubris syndrome, he replied that Trump was a hard case, because he reigned over a family business for so long before entering politics. “He has obviously got hubris, but did he acquire it in his business? What was he like when he was twenty? I refuse to put a label on him because I don’t know enough.” Owen added, “Watch him very carefully. It’s a phenomenon that needs to be analyzed, but it will not be very revealing to put labels on it that are inappropriate just because you desperately want to say, ‘He’s crazy.’ ”
This I like, of course. Regardless of the truth of Trump's mental health, it will not be useful to label Trump crazy. It will, however, spread stigma.

Thursday, May 11, 2017

#CultOfCompliance - Punching doesn't stop meltdowns.

The video linked here shows an aide hitting a 6 year old autistic child in the face. The school's excuse - the child spit on the aide. There's plenty to be said about the lack of training of aides, lack of standards, the rise of video surveillance in school and the potential problems (video can be used against disabled children). I just want to emphasize this one point:

The use of force and other forms of coercion can never, will never, force a child out of a meltdown. You cannot scare or hit a child neurotypical.

But authority figures keep trying. That's the Cult of Compliance.

Monday, May 8, 2017

Rape Culture and Stock Photos

I hesitated to write this blog post, because it jeopardizes a potential outlet for coverage of disability-related stories. Being a freelancer means that criticizing anybody threatens future income streams.

Tonic, the health page at Vice (and thus a disability venue) has a good article on the failure of colleges to teach consent. It looks at sexual education trainings that take place early in Freshman careers, and notes a lack of clarity or a brevity of content around consent, in particular:
Every administrator contacted for this piece stressed that they have a robust sex ed plan for freshmen. But while learning about how to put a condom on is great, the more pressing issue might be a more extensive conversation about knowing when to back off a sexual situation that isn't clearly consensual, regardless of how intoxication can blur boundaries. According to the Chronicle of Higher Education, there are approximately 327 active sexual assault investigations on campuses across the US.
Good piece.

The piece features a stock photo of an apparently female body clad in jeans and a bra, her back seductively bare and curvy, on the lap of another individual (likely male) clad in a gray shirt and green rugged trousers, his hands on her upper thighs. It's an erotic picture, chopping bodies into parts without heads, emphasizing the skin of the female on top. I'm deliberately not inserting it into this post, because I don't want this post on consent to include an erotic image.

And Tonic should have made the same decision.

Associating stories about rape and consent with sexy images perpetuates rape culture. It's an editorial mistake, and I can't speculate about why Tonic chose to do this. But as the piece was shared throughout social media, this sexy image kept popping up. It's the wrong message.

Thursday, May 4, 2017

"Genetic Basis for Criminality" - Racism and Ableism

I'm always interested in tracking the ways that hatreds intersect and magnify. Here's a classic one, still vibrantly alive among American racists. The New Yorker published a long article on the racists behind the mustard-based South Carolina BBQ sauce. The family that developed it has a long history of racism, and the man behind "Piggie Park" is pretty extreme. He died, can the family adapt? 

"High" is the founder of the Southern Carolina Barbeque Association and he thinks all that racism stuff was overblown. My emphasis:
High spoke favorably of the Piggie Park’s new management—“Paul and Lloyd, and he’s got a daughter whose name I forget, cute girl. They’re real dedicated.” He had also thought highly of Maurice, who, he said, was always friendly and insisted on top-of-the-line ingredients. “He and Strom Thurmond were talking about all-natural thirty years ago,” he said, which seemed a bit like remembering Oswald Mosley for his advocacy of brown bread. I asked whether he thought Maurice’s political legacy posed a problem. “It wasn’t nearly as bitter as modern day makes it seem,” he said. He went on to talk about the trouble with racially interbred societies, the genetic basis of criminality, and his belief that the South should secede. After a disquisition that touched on everything from slavery (“It’s been around since Day One, and they talk about it in the Bible”) to Trump (“I happened to see him speaking to a crowd before he declared, and I came into the kitchen and I said, ‘Lovebug, that man’s gonna be President’ ”), he returned to the Piggie Park. “This is the most taken-for-granted barbecue house in America,” he said.
The assertion of a genetic basis of criminality is a core principle of eugenics, used to discriminate against disabled folks everywhere. It also informs "scientific racism," newly in vogue, but never really gone.

And here's a recent appearance of twitter from a man who works for PA Corrections and used to work for PA Probation.

Wednesday, May 3, 2017

Augustine and Insanity Discourse

Every time there's a new interview with Donald Trump, my social media feeds pop with people speculating about the president's mental condition. For example:
Here's a great essay I've been meaning to share by Jessica Wright in Eidolon on "Crazy Talk," the rhetoric of mental illness.
What is the effect of the “crazy” talk that permeates our public forums and our political discourse? We have a very long history of using words such as “crazy” and “mad” in casual polemic. The Greek orator Demosthenes used the word mania sixteen times in his extant speeches, and never to offer a “medical” diagnosis. Some two-and-a-half centuries later, Cicero employed the Latin word insania and its related verb insanire on over seventy occasions.
Authors such as these were the models of polite speech and rhetoric throughout the Roman Empire, and were enormously influential in literary culture and education in modern Europe and its imperial reach. As Caroline Winterer has shown, Greek and Latin models were fundamental to political oratory in antebellum America. Frederick Douglass, as David W. Blight has described, studied rhetoric from a book called The Columbian Orator, which included extracts (translated and imagined) from Greco-Roman oratory.
It is perhaps unsurprising that similar rhetorical moves structure our own polemic, their figural quality all but invisible. That is not to say that we are unaware of the effects of our words. Disability rights activists and disability theorists have long highlighted the normative and “ableist” assumptions that underwrite discourses of “crazy” in contemporary culture. Using mental disorders as insults shapes our way of thinking about mental disorders and our mode of engagement with people who experience them.

Tuesday, May 2, 2017

Divide and Conquer vs Single Payer Now

Alabama GOP congressman Mo Brooks said that people who make "good choices" deserve better healthcare, thus framing the sick as morally inferior, as culpable. It's not a new argument.
“It will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy."

The natural retort will be to hold up other members of the worthy sick, people struck with cancer in infancy or wounded by the actions of others. My first instinct was to talk about my son, who is not sick, but whose pre-existing condition (Down syndrome) happened when his cells divided in the first moments after conception, copying an extra copy of a chromosome into each new cell.

But the GOP is ready for this. Their messaging on health, disability, and poverty is to divide the worthy from the unworthy. To say to me - oh we're gonna take care of your son, we're just going to divide out the fraudsters. We're going to take care of the "good poor," but not "those people." 

And for many, it will work. We have seen this around social security, medicare, medicaid, welfare, and so much more. Americans are far too willing to believe that they deserve the government supports they would deny to the less deserving. To signal our virtue, rather than espouse a philosophy of universal support and basic human rights.

We cannot play the GOP game of determining who is and isn't worthy. A just society provides healthcare to all.

Single payer now.

Monday, May 1, 2017

"Free Cookie" - Security Guard Trainer Maces Autistic Man

A man who trains security guards sprayed pepper spray in the face of an autistic man who was taking a free cookie.
He was the training director of one of St. Paul’s largest security companies — a man certified on when and how to use Mace.
Which left police mystified as to why Timothy Knutsen would pepper spray an autistic man in the face for eating a cookie from a Cub Foods sampler tray.
Knutsen, 53, of St. Paul, has been charged with two counts of fifth-degree assault and disorderly conduct for an incident in Roseville last month.
According to an incident report, in early March, Knutsen was a customer at a Cub Foods at 1201 Larpenteur Ave., when he saw a man eating “a doughnut or a cookie” from the bakery. He told an employee at the store’s service desk, but she said she didn’t see it and there was nothing she could do.
“(Knutsen) was not satisfied with her response,” the complaint stated. He asked to speak to the store’s loss-prevention personnel — people he later claimed he was responsible for training. Statements from his (now former) company, American Security, as well as Cub Foods, dispute that.
The cookie eater — a 20-year-old Roseville man who was not identified because he has autism and is classified as a vulnerable adult — paid for his groceries and began making his way back to the deli/bakery area again. Knutsen fell in a few steps behind, the complaint stated.
Trying to find out more about this story. It's weird. I am suspecting other forms of bias (i.e. racism) are intersecting here, but that's just speculation.

Friday, April 28, 2017

Restraint and Death of Disabled Civilians in Texas

The New Statesman reports on deaths in restraint or otherwise in custody of mentally ill civilians in Texas. There's a new bill pending, the Sandra Bland Act. The paper reports on the bill, but also investigated deaths. Excerpts:
Klessig is one of at least 33 people with histories of mental illness who died after being restrained by police in Texas over the past decade, according to a first-of-its-kind investigation by the American-Statesman of in-custody deaths. Six of those people wielded weapons; the rest were unarmed, records with the Texas Attorney General indicate.
Some of the deaths in police custody also raise serious questions about the way police deal with people struggling with mental illness. In several instances, police appear to have acted contrary to what experts advise — a slower, less confrontational approach to mentally ill people that can prevent violent encounters and death.
State Rep. Garnet Coleman, the Houston Democrat who filed the Sandra Bland Act — named for a mentally ill Illinois woman pulled over in Waller County for a minor infraction and later found dead in her jail cell from an apparent suicide — said the additional training would help officers distinguish between “a person who is in crisis and one who is being aggressive … and resolve the situation in a peaceful manner.”
My take: Such bills will help, but relying on officers to distinguish between disabled and non-disabled civilians will leave many vulnerable. We need core, default, changes.

Here's the project webpage. I'll be following it!

Thursday, April 27, 2017

Washington Post and Myths about Disability

Disability rights are under attack in DC. Right-wing politicians want to slash Medicaid, the shift towards "school choice" is a blatant attack on special education rights, the ADA is being dismissed as overwhelmed by frivolous lawsuits, and the GOP argues that SSDI is mostly fraud. It's not, but narratives can overwhelm data so easily.

So it's a problem that the Washington Post launched a big new series rural disability, emphasizing fraud in Social Security Disability Insurance. Here's a critique from Daniel Marans (who, incidentally, has been covering the DC Disability rights world more and more for Huffington Post).
Disability rights advocates and a leading Democratic think tank are livid at The Washington Post over a March 30 front-page story on the prevalence of disability benefits in rural America.

The newspaper claimed that “as many as one-third of working-age adults” in rural communities receive disability benefits. But as the Center for American Progress calculated ― and The Huffington Post confirmed by looking at the raw data ― that proportion holds true in only one county in the entire country.

Republicans often use stories like the Post’s to argue that the disability rolls have grown due to abuse from people who can work but simply do not want to. For example, Sen. Rand Paul (R-Ky.) complained in January 2015 that people were “gaming the system” to receive disability benefits. In fact, the Social Security Administration’s inspector general has estimated that the Social Security Disability Insurance program has a fraud rate below 1 percent.

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 that 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 quƩ decir de la contemporƔnea.
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.