Five Questions for NDSS

  1. What is the NDSS position on using vouchers to privatize special education.
  2. Has NDSS taken money from Devos or anyone connected to DeVos? 
  3. NDSS has a new emphasis on human rights, but every employee on your website presents as white. What is your diversity plan?
  4. What is the NDSS position on the Affordable Care Act and block grants for Medicaid?
  5. Did NDSS sign off on Avonte’s Law even though funding for RFID chips in disabled kids was being taken from community-police relations programs in minority communities? (I’ll catch readers up on this law when it gets re-introduced in Congress)

Yesterday at Pacific Standard I have a piece on the dilemma presented to advocacy orgs (I focus on disability, but I think it’s a general problem) by the Trump administration. From a PR perspective, they are completely toxic to any organization that is at all concerned about justice, social or otherwise. But from an influence perspective, you need access to do your job.

In the disability world, DeVos’ position that enforcement of the Individuals with Disabilities Education Act (IDEA) should be left up to the states emerged as particularly dangerous — and would also violate federal law.

Shortly after the hearings, the National Down Syndrome Society (NDSS), one of the more visible Washington-based Down syndrome advocacy groups, published a post on Facebook showing DeVos meeting with them and posing for pictures. The headline: “National Down Syndrome Society Meets with DeVos. Applauds her commitment to special need families.” The world of disability rights activists, including many parents of kids with disabilities, reacted in fury; this was, after all, a cabinet nominee who seems to find disability rights expendable. There ensued hundreds of negative comments, widespread denunciations on social media, accusations leveled at the pro-Trump chairman of NDSS’ board, quick clarifications from NDSS, secret phone conferences with their backers, and so on. The National Down Syndrome Congress (NDSC), a rival organization, released a statement requesting that the Senate delay voting on DeVos’ nomination. The consequences of that poorly worded photo op are going to linger, possibly for years, in this particular community.

I have a history – —all positive – —with NDSS. I signed on as an ambassador during the run up to the ABLE act, a bill designed to make it possible for some people with disabilities to save money for education and housing without losing their government benefits. There were rumors that the NDSS was telling the GOP they were willing to exclude adults diagnosed with disabilities in exchange for kids – —i.e., protect people with Down syndrome and ignore the needs of others, —but I thought the law overall was worth fighting for. Last March, NDSS included a Trump “MAGA” hat in a charity auction. I was sitting in a pub in D.C. late that night, as it happened, with a gathering of other disability -rights activist (and a stray medievalist or two), when my phone blew up with the controversy. I stepped outside, and personally called Sara Weir on her cellphone to make sure she knew what was going on. She emailed me a statement, and removed the hat from the auction, and I distributed her words across advocacy networks to calm the controversy.

But right now, NDSS isn’t talking. I’ve repeatedly emailed them, called all the numbers I know, and asked these four questions. They are not responding, hence I’ve had to go more public. I say this not just as a journalist, but as a father of a boy with Down syndrome.


To my mind, NDSS is just doing what it’s always done, seeking access and supporting laws help kids and adults with Down syndrome, even if the law ignores or actively hurts other marginalized communities. It seems to be increasingly a Down Syndrome First, organization, not a Human Rights organization.

The DeVos debacle is a case in point. NDSS thought it was business as usual. They have a rich right-winger running their board, the head of the DS Guild of Michigan works/worked for the running mate of Betsy DeVos’ husband when he ran for governor. They used those contacts to get access, to get a photo op, to demonstrate that they are in the room where it happens. Then the community blew up, and liberal backers of NDSS quickly rallied to argue that the access was worth the bad optics, that it was just poor messaging rather than a sign of ill intent.

I’ve never taken part in the non-profit wars within the Down syndrome community. There are a lot of hurt feelings and divisions, competition for donations and publicity, and some personality clashes (I’m told).

But someday Trump will be out of office, and if NDSS wants to maintain credibility as a “Human rights org,” rather than a right-wing Down syndrome organization that doesn’t care about disability rights more generally, they are going to have to change course, and do so quickly.

It might already be too late for this current crop of leadership, but I hope not.

And you can start by answering questions.

Disability and The Murder of Emmett Till

Emmett Till was a disabled black boy murdered for allegedly whistling at a white woman. An author has found the white woman, interviewed her, and in a widely shared Vanity Fair piece, told a reporter that the woman admitted she lied. This is not a shock that she lied, it is useful that she admits it, and there’s been a lot of good commentary from other folks, especially black writers, about the pressure to forgive. It’s important.

I just wanted to highlight this twitter thread (with permission), which makes many of those arguments, but also emphasizes a key fact – Emmett Till was disabled.

Many of the victims of racist violence in our nation’s history turn out to also have been disabled, because oppressions magnify and multiply.

Month One: Pacific Standard

I’m contracted to write 6 columns a month for Pacific Standard Magazine. I might actually write more or less depending on how long they are, what news cycles require response, or whatever. But for January, I have now published 6 pieces. They are, in reverse order:

Maria Town was the disability community liaison over the last 18 months or so under Obama. I interviewed her.

Betsy DeVos didn’t even demonstrate a wikipedia-level understanding of IDEA at her hearing.

I made J.K. Rowling cry with this story. So that’s fun. Breaking the tweet thread for this one.

I went to Obama’s Farewell. Remember the Enlightenment  took place amidst chaos. Obama thinks we might need a new one.

All the Trigger Warnings for this one. Graphic. Awful. Necessary to witness.

 I didn’t think I’d be writing much about the Middle Ages when I took this gig. Instead, I am seeing medieval analogues everywhere. I wrote The New Blood Libel about anti-Jewish hate then and now.

Thanks for reading! I tend to be pretty extrospective about my writing, as writing about writing helps me write.

King Trump and Tocqueville – #NewVersailles

I know it’s all been King Trump stuff lately, but I find it endlessly riveting/completely terrifying. Under the hashtag #NewVersailles, I’ve been watching the various ways in which Trump operates within a court culture, rather than a bureaucratic culture. I intend to write up about the classic “problem of counsel” this will create when things go wrong.

Here’s the latest:

Courts can, I guess, be a reasonable way to organize government function in theory, assuming the right monarch at the core. But this core, here, is rotten.

Teen Vogue, aka the voice of the Resistance, published a good piece on the Women’s March and Tocqueville, the 19th-century French writer on America. Tocqueville was interested in the American avoidance of tyranny, even as Andrew Jackson took the presidency. Williamson, the author of the article, writes:

Autocrats see social mobilization — regardless of content — as a threat, and individual rebukes as tolerable. As Tocqueville notes, “A despot easily forgives his subjects for not loving him, provided they do not love one another.”

If the protests this weekend are to be effective, we will have to do more than demonstrate opposition to Trump. We will have to demonstrate an ongoing commitment to one another through organized political action.

Onward. We are the majority.

In Praise of Nero: Trump and the Claque

Good piece in the New York Times: “For Trump, everything is a rating.” He, like many celebrities, has a long history of lying. Celebrity culture is also filled with paid PR folks maintaining bubbles of celebration.

Celebrities have support staff dedicated to maintaining their bubbles. (Even Mr. Trump’s bringing staff members to cheer him at events — like his first postelection news conference — is familiar from the critics association panels. Journalists are professionally forbidden from applauding the celebrities they cover, so network staffers whoop it up to massage their stars’ egos.)

Which means it’s time to talk about the Emperor Nero, who decided to play the lyre, and wasn’t very good at it. But he really wanted people to cheer. What to do?

3 He [Nero] was greatly taken too with the rhythmic applause of some Alexandrians, who had flocked to Naples from a fleet that had lately arrived, and summoned more men from Alexandria. Not content with that, he selected some young men of the order of knights and more than five thousand sturdy young commoners, to be divided into groups and learn the Alexandrian styles of applause (they called them “the bees,” “the roof-tiles,” and “the bricks”),57 and to ply them vigorously whenever he sang. These men were noticeable for their thick hair and fine apparel; their left hands were bare and without rings, and the leaders were paid four hundred thousand sesterces each. (Suetonius, The Life of Nero, 20.3)

Here’s what we know about the Augustiani, from Actors in the Audience: Theatricality and Doublespeak from Nero to Hadrian (Harvard University Press, 1994), by Shadi Bartsch.  Bartsch writes (click for accessible version):

Page 8.

I am persuaded by the general sense that looking at Central Asian dictators and their tacky grandiosity mixed with savage repression is the best analogy to what Trump’s doing now, but definitely want to keep track of ways in which historical examinations of kings and emperors help us better understand Trump’s court culture.

More to come.

The Frankish Racists are … Anglo-Saxons???

UPDATED with the French and clarifications.

Marine Le Pen made an interesting claim for those of us tracking the use of history to bolster European racism:

France’s presidential candidate Marine Le Pen has told a far-right conference “2016 was the year the Anglo Saxon world woke up”.
The Front National leader was among anti-immigration and populist parties who gathered at a conference dubbed the “European counter-summit” in Koblenz in Germany.

If Le Pen is going to claim heritage with an early modern Germanic tribe, shouldn’t it be the Franks? She might just mean the US and the UK though (which has it’s own WASPy problems).

I haven’t tracked the use of “Anglo-Saxon” to mean “white,” but it’s a real problem for racists that “white” is a flexible modern concept with no real grounding in history. They address that problem with their own take on medieval history.


Update: I’m told that using Anglo-Saxon to refer to UK/US is common in France, as a way to distinguish it culturally. Here, thanks to a friend, is the quote in French:

Avec les succès surprise du Brexit et de Donald Trump aux Etats-Unis, “2016 a été l’année où le monde anglo-saxon s’est réveillé. 2017 sera, j’en suis sûre, l’année du réveil des peuples de l’Europe continentale”, a déclaré Marine Le Pen à la tribune.

It’s clear here she means US/UK. Note – the US/UK is NOT Anglo-Saxon. And whatever happened to the Norman conquest?


Will keep an eye on this usage. Matt Gabriele, a medievalist colleague, and  have decided to coin this kind of framing, “nostalgic medievalism.” More to come, alas.

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.

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.

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.