Friday, March 24, 2017

Shock and Law: Tasers and the Cult of Compliance

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

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

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

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

Thursday, March 23, 2017

The Bipartisan History of Disability Rights

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

Wednesday, March 22, 2017

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

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

Tuesday, March 21, 2017

Julia the Muppet: Then and Now

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

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

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

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

Monday, March 20, 2017

There Ain't No Good Eugenics

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

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

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

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

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

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

Friday, March 17, 2017

The Tooles on St. Patrick's Day

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

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

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

Thursday, March 16, 2017

Coverage: Ruderman Report on Media and Filicide

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

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

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

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

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

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

Wednesday, March 15, 2017

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

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

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

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

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

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

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

Tuesday, March 14, 2017

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

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

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

Monday, March 13, 2017

ADAPT: Photos and Videos from Kenosha and Racine

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

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

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