Monday, January 23, 2017

Happy Ed Roberts Day!

Google made a Doodle of Ed Roberts, the legendary disability rights activist!

Description: A drawing of Ed Roberts, a man in a wheelchair with red shirt and grey pants, speaking into a microphone, oxygen tube in the corner of his mouth (as was true in so many pictures of him!). He's in a classroom setting, a white board behind him, people listening (represented abstractly as heads of different colors) and GOOGLE on the wall. The second O in GOOGLE is a clock showing 2:00.
If you click on the link - Explore the work of disability rights advocates in America - You get to a virtual exhibit funded by, organized by AAPD, curated by the amazing Allie Cannington and Amber Melvin, and written by me. It was part of the ADA25 celebrations.

Some things I'm proud of in the exhibit.
  1. It starts by defining Ableism. The history of the disability rights movement is a history of oppression and resistance. It's not some feel-good pablum about overcoming stuff.
  2. It ends with: The disability rights movement has always depended on people with and without disabilities, youth movements, mentors, cross-disability and cross-movement alliances, and lots of hard work. There are so many ways to fight ableism and promote the freedoms and ensure justice for all people with disabilities.
It's an exhibit that tried, in highly constrained spaces, be at once joyous about the victories and real about the struggles.

I also, with Blaise Zerega, interviewed Nora Roberts (Ed's mom) and co-wrote a biography for the ADA25.

A station wagon rolled up to Burlingame High School in Burlingame, California at lunchtime. A young man was unloaded from the car by his family, who carefully supported his head, his back, and his legs while doing so. For the past few years he had been so terrified of being stared at that he had not wanted to leave the house. Arriving in the lunch courtyard, where hundreds of students were gathered, he looked up, and his worst fear was realized. Everyone turned to gawk at him. “When I looked up at them, they looked away,” he recalled.
The man was Ed Roberts, who was then in his senior year of high school. As a young boy, he had loved football and baseball, and was the fastest kid on the block. But at age 14, in 1953, polio paralyzed him from the neck down. From then on, he used an iron lung to breathe and a wheelchair to move around. His doctor said he’d be a vegetable.
Though his arrival at the Burlingame High campus was initially terrifying, he would in later interviews return to this moment. It sparked a transition from a boy wallowing in self-pity to the visionary leader he eventually became. “Something remarkable occurred to me,” he said. “The first thing was that it didn’t hurt. For people to stare at me did not hurt me. The second thing was that maybe it wasn't all my problem, because when I looked back, they would look away. As I thought about that, why was I taking all this on as my problem when wasn't the fact they stared also their problem?”
And then he realized something else—that the attention could turn him into a star. “I think that was one of the more important times in my life, that I realized I could enjoy it. I didn't have to feel guilt or anger,” he said. “Actually, I could enjoy being stared at if I thought of myself as a star, not just a helpless cripple.”
A few years later, he started college at U.C. Berkeley and quickly convinced the university to let him take up residence in an old hospital wing. Soon, other disabled students arrived to build on Roberts’ improvised accommodations. They initially called themselves the Rolling Quads—named for quadriplegics in wheelchairs— which he later organized into the Physically Disabled Students Program. The PDSP eventually became the Center for Independent Living, which extended its benefits beyond the confines of the campus and helped make Berkeley into one of the most accessible cities in the world. Later, Roberts became Director of Rehabilitation Service in California, co-founded the World Institute on Disability with Judy Heumann, served as an inspirational leader in the fight for the ADA, and travelled the world to learn and teach wherever he went. He passed away in 1995, having seen the ADA realized five years earlier.
Heumann, a legend of the disability rights movement herself, remembers the power of his dark eyes.”He had a great smile and he could draw you in with his eyes and he totally knew that,” said Heumann. He knew how to work people, really, really well.” He knew that people were going to stare at him, so he’d stare right back. Roberts said, “I became a star. I just assumed that position.”
Alice Wong, of the awesome Disability Visibility Project, made this. STAY PRICKLY.
You can read the image description and sourcing for Alice's image here.

Yesterday I was asked about how best to donate to the Disability Rights movement. I've been asked that a lot lately. I always worry about giving advice, because there are so many awesome ways to work and give and I don't want the specifics of my experience and my friendships skew such things, but I offered some thoughts:
I followed with a shout out to the Protection and Advocacy Network, listed a bunch of orgs that I personally like or have worked with (emphasizing this is just my experience), and suggested that this be our guide: "I really want to emphasize though: Look for your local orgs run by people with disabilities from marginalized communities. Fund them."

Fund them, please.

Happy Ed Roberts Day.

Thursday, January 19, 2017

Pruitt, the EPA, and Asthma

Cory Booker (Sen-NJ), after laying out all the lawsuits that Scott Pruitt, now nominated to head the EPA, has participated in on behalf of polluters (against the EPA). Booker asked: Do you know how many kids in Oklahoma have asthma?

Pruitt: I do not Senator.

It turns out about 400,000. 10%. He's never "represented" those kids, just the polluters. Pruitt says he can't sue if there's no injury or standing. Booker responds - clearly there's an air pollution problem, but Pruitt hasn't done anything about it.

Here's the clip.

Booker might talk about this in the context of disability instead of disease, if he asked my advice, but it's a good clip, and he didn't.

Read this The Guardian op-ed: Environmental racism is going to get much worse.

Read this on the intensifying and unified Democratic resistance. In it, the author describes the Booker/Pruitt scene as follows:
Today, Cory Booker questioned Scott Pruitt, Trump’s nominee for E.P.A. administrator, who, as Attorney General of Oklahoma, not only joined a dozen industry lawsuits against the E.P.A. but at times directly copied the language of energy-company lawyers in doing so. Booker asked Pruitt if he knew how many children in Oklahoma had asthma. He didn’t, but the answer turned out be a hundred and eleven thousand, a tenth of the children in the state. “You’ve been writing letters on behalf of polluting industries,” Booker said. “I want to ask you, how many letters did you write to the E.P.A. about this health crisis?” Pruitt tried to explain that lawsuits require an injured party and that, in the case of the E.P.A. litigation, the injured parties were the energy corporations. “Injury?” Booker said, drawing out the word, and then he returned to the matter of all those asthmatic kids in Oklahoma.

Politicizing Disability - The How and the Why

I find the New York Times "disability" column on lives and identities, all written by disabled people, important and fascinating. It's created a silo for disability on the page, which is better than no place at all, but still shows a lack of more systematic engagement with disability rights. But the NYT byline is a good one, and every disabled writer should try to place a piece there, if they have the energy.

Yesterday they ran one on politicizing disability. There's a lot of good in it. Like many others, it says don't focus on the Kovaleski incident, but move on to policy. The author then writes:
In addition to greater participation in the public sphere, true progress for citizens with disabilities will require a willingness to confront the issues head-on, even when — especially when — citizens disagree on competing solutions. We must politicize disability — not in the cable-news, grandstanding kind of way, but in the term’s more formal sense.
I think about this a lot. There are lots of disabled folks and their families who voted for Trump - millions of them.  And of course every Trump voter will, if they are lucky, become disabled in time. Disability intersects with other forms of identity, ableism intersects with other forms of oppression, but neither is like the other forms of identity or oppression.

Which is to say rich white Republicans also have to address disability in their lives. Politicizing disability is a good idea.

Where the piece falls down, as many were saying on Twitter yesterday, is the how. I know, as well as anyone, the limitations of the op-ed form. No single essay can do everything. But there are a lot of folks deeply engaged in the how. For me, I focus on "Crip the Vote," because I know the folks running it, but there are lots and lots of others.

So let's get to the how.

Wednesday, January 18, 2017

DeVos Hearings and IDEA - Three Clips

When someone says they will be "sensitive" to the needs of people with disabilities, I get nervous. Being sensitive is like "awareness" campaigns. It doesn't do anything.

One: Hassan and DeVos on vouchers and special ed.

Hassan - It's not just ideas, but how they work in practice.

Two: Kaine and DeVos (DeVos - Leave it up to the states)

Three: Hassan and Devos part II

Hassan: What about warehousing?
DeVos: I'll be sensitive to special needs students.
Hassan: No, it's about enforcing the law not sensitivity.

Tuesday, January 17, 2017

Racism in Historical European Martial Arts

There's a vibrant sub-culture of people who practice "Historical European Martial Arts (HEMA)." This is not the Society of Creative Anachronism, though surely there's plenty of cross-over in North America, but people learning how to use European weapons to fight.

As I've been writing about, any sub-culture that engages the imagined European medieval past can easily become a locus for anxieties about whiteness and identity.

I've been made aware of a Tumblr on "Racism" in the HEMA community. This spring, I hope to talk to Ken Mondschein, who is researching this phenomenon, when we're both at a conference. For now, you can browse the tumblr.

Monday, January 16, 2017

Once Time Boy. Hero.

I wrote a story about my son watching the third Harry Potter movie, signing "deer" during the Patronus scene, and his engagement with stories. It's a fairly serious piece, wrapped about some tearful and sweet moments, about presuming competence in an ableist world.
Here’s why all this matters. Presuming competence is a fine concept, but hard to execute in practice. Our society and its people are deeply steeped in ableist concepts relying on assessing skills and deficits, intelligence and abilities, based on highly prejudicial concepts of normal. No matter how enlightened one wants to be, it’s hard to go about presuming competence without evidence. So when my son cheers for Rey, Moana, or Harry, he’s not only showing me that he’s engaging with stories, but also telling me to remember that he’s competent in all kinds of other ways he can’t yet prove.
Sometime last fall, I told my son his usual good-night superhero story, which he capped off with “the end.” Then he grinned, and said, “once time boy. Hero.” Lying on his back, he raised his arms into the sky and made superhero flying sounds (a kind of whooshing sound). “Nico. The end.”
J.K. Rowling read it.

Additional pieces on narrative and my kids:

Friday, January 13, 2017

Anti-Semitic Violence and Jared Kushner

Last week I wrote about "The New Blood Libel," a wave of anti-semitic mythography following the election of Donald Trump.

Earlier in the week, bomb threats closed Jewish Community Centers across the Eastern seaboard. I'm afraid it's going to get worse.

Meanwhile, Jared Kushner, Trump's son-in-law, an Orthodox Jew, is rising in the ranks of advisors. Right now, Trump's supporters cite him as evidence that King Trump is not, in fact, an anti-semite. As soon as things go badly, those supporters will turn on Kushner for poisoning the king's ear with his bad counsel.

More to come on Kushner and the New Versailles as I have time (book manuscript needs to be damn close to done this month, plus a scholarly article and white paper).

Thursday, January 12, 2017

IEP at SCOTUS: Endrew F. vs Douglas County

It's almost impossible right now to keep up with all the stories circulating. Congress is defunding the ACA. The Republicans voted down an amendment against mandating coverage of people with pre-existing conditions, condemning millions of people to an early death, if that actually ends up being law. Donald Trump's banana republic press conference demands a unified response from the press, and not to mention that until he releases his tax return, we should assume he is financially compromised by both Russia and China, and will make his military decisions based on his personal financial wellbeing. I haven't even gotten to the vaccination story yet. We're overwhelmed.

Next week, I hope to write more about being overwhelmed and some thoughts from the Berlusconi era in Italy on how to respond (I've been waiting for someone else's piece to emerge).

In the meantime, SCOTUS heard a case that could prove vitally important to special education across the country. Special education is federally mandated, but was never funded (it was supposed to be funded, but you know Congress ...).

There's a very real chance that the Supreme Court will rule that school districts must go beyond "de minimis," meaning education that takes us beyond the minimum possible, to a standard “aimed at significant educational progress in light of the child’s circumstances.” That would, to my reckoning, represent an enormous judicial push to improve special education standards across every school district in America.

And then ... well, then there will be a lot of local battles between family and schools to come. But the IEP process is already so fraught, so filled with litigation, that I have a hard time believing it'll get worse.

Here's SCOTUSblog on Endrew F. v Douglas County:
At today’s oral argument in the case of a Colorado student with autism, one thing seemed relatively clear: The justices were dissatisfied with the U.S. Court of Appeals for the 10th Circuit’s ruling that school districts can satisfy federal education law as long as they offer a student with a disability an educational program that provides him or her with a benefit that is more than merely de minimis, or non-trivial. It was less clear exactly what standard (if any) the justices might substitute for the “more than merely de minimis” standard, but a standard “with bite” – as Justices Ruth Bader Ginsburg and Elena Kagan put it – would be a welcome development for children with disabilities and their parents.
A standard "with bite" could be pretty good. It's not inconceivable that this SCOTUS could provide such a thing.

And yet ...
Despite Fisher’s efforts to focus the justices on the text of the statute, they remained skeptical. Justice Anthony Kennedy expressed concern about what new costs Fisher’s proposed standard might impose on school districts, by requiring them to provide additional services, while Justice Stephen Breyer worried aloud about the propriety of the justices – who, he suggested, “don’t know much about” education – creating a standard that could then be interpreted differently by “judges and lawyers and people” all over the country.
Chief Justice John Roberts flagged a different potential problem, echoed by Kagan: How would Fisher’s proposed standard work for students who, because of their disabilities, may not be able to follow the general educational curriculum? Suggesting that there is some “flexibility” in the IDEA, Fisher advanced a slightly different version of his proposed standard: A student’s IEP should generally “be tailored to achieve a general educational curriculum at grade level”; if that is not possible, the IEP should use alternative benchmarks that are “the highest possible achievable by the student.”
So what's going to happen? Who knows, but here's the key possibility:
Today’s argument ended with the justices on the horns of a dilemma, as they so often are. Despite excellent advocacy from all three lawyers, there is no clear and easy answer. But they seemed sufficiently unhappy with the “more than merely de minimis” standard that they are likely to strike it down. The standard proposed by the federal government – which would require the school district to offer a program “aimed at significant educational progress in light of the child’s circumstances” – seems to be the most likely replacement, both because the justices regard it as most consistent with existing law and because it comes from the Department of Education, which – as Breyer noted – has expertise in issues related to education and the IDEA. And even if it’s not the standard that Drew and his family are advocating, they would no doubt nonetheless regard it as a significant victory. A decision in the case is expected by summer.

Wednesday, January 11, 2017

Awesome! Wow! - My son turns 10

It is, incredibly, my son's 10th birthday today. All I can say is ...

You read the story about Nico and Hamilton, right? And you saw that Lin-Manuel Miranda liked it? Cause that was pretty, um, awesome. Wow.
It's been a great year. He's become a particularly great traveller (so long as we can obtain the appropriate foods, something I'll write about more this year), a good communicator, and remains extremely emotionally savvy.

As I right, he's rocking out to the guitar solo in "Black Friday Rules" by Flogging Molly and eating a bowl of cheerios. Later, we'll celebrate with his favorite things - blueberries, pretzels, fig bars (Matt's, not Newtons), and orange noodles.

Nico wants to communicate. He wants, as I say, to dance like someone's watching. And so I write, because that's what I know how to do. Here's some pieces, old and new.

I'll have a piece about storytelling coming soon!

Happy birthday to my son.

Tuesday, January 10, 2017

Disability, Bullying, and Violence - Recent pieces

I wrote for Pacific Standard on the sexual assault of a disabled black teen by white classmates, after months of racial harassment. Neither sex nor racial hate charges are being brought.
I also wrote for CNN about Meryl Streep and Trump. Stop talking the mocking incident, start talking healthcare, violence, poverty, and education.
Today, I'm off to watch Obama's farewell address and write about historical transitions and how much we have no idea what's going to happen next.