Thursday, December 29, 2016

2016 in Review: Writing for LARB

I wrote two pieces for Los Angeles Review of Books this year, one on sexual ableism and the Anna Stubblefield case, the other on Michel Bérubé's recent book on narrative deployments of developmental disability in literature

The latter was sheer joy to write. Bérubé's was engaging to read, providing me (a non-literature specialist) with a welcome pathway into diverse works, academic debates, and all delivered with his typical panache. I was able to write in a combination of journalist and academic voice that I rarely reach, and I confess myself satisfied with the results.
Professor Bérubé appears as a kind of character in The Secret Life of Stories, revealing that the index provides meta-textual commentary enlivening a text with which students otherwise find difficult to connect. Pale Fire, he explains, “deploys intellectual disability as an invitation to the kind of hyperattentiveness […] to every personal and textual encounter.” If you don’t pay attention, the narrative professor warns his students, you might miss something. In the same section, naturally, Bérubé breaks to give us a little anecdote about the seminar in which he met his wife, then adds a footnote, revealing he’s lied to us in the main-text, warping the truth to make a better story. Like so many of the self-aware characters he discusses, Michael Bérubé is an untrustworthy narrator.
It also gets serious about our lives as academics and fathers of sons with Down syndrome.
In the state of Texas, Bérubé reminds us, a disabled individual can be sentenced to death if their “mental capacity […] exceeds Lennie’s.” Suddenly, how we interpret literary representations of intellectual disability becomes a literal matter of life and death. Bérubé writes, “the interpretive stakes are always high when the subject is intellectual disability, because the stakes are ultimately about who is and who is not determined to be ‘fully human,’ and what is to be done with those who (purportedly) fail to meet the prevailing performance criteria.” I can’t prove that Bérubé was thinking about his son when he wrote that sentence; I can only tell you that as I read, I was thinking about mine.
I like the ending a lot, too, for pure emotional writing. It makes me a little teary to read, but you'll have to click over to see it (did I do the clickbait right?).

Sexual Ableism, in contrast, was one of the most difficult things I've ever written. I sat with the story for four months, talking to experts, listening to debates, reading the many long pieces that came out trying to parse truth from fictions. The case of Anna Stubblefield raised an intense cascade of issues around disability, communication, competence, sex, race, gender, class, and more. It involves an older, white, female, disability studies professor accused, and then convicted, of raping a non-verbal, younger, black man with cerebral palsy. Stubblefield maintained the relationship was consensual. The family of the victim (DJ) maintained that he could not communicate at all, so could not consent.

A lot of the writing on the case tried, perhaps reasonably, to ascertain what happened. My early drafts tried to talk about the "what happened" too, then I gave up and instead wrote about stories and possibilities. There are multiple possible stories that could be true, but I was struck by the way that the trial only presented one. The judge refused to allow the possibility that DJ might be a competent, sexual, man. I don't know the truth, but I know that the shutting down of the multiple possibilities has broad consequences. I wrote:
Understanding the Stubblefield case requires simultaneously holding two possible mutually exclusive stories in our minds: both terrible. In the first, Stubblefield used FC to help D.J. communicate with the world for the first time in his life. He and she became close. She helped him enter school and collaborated on an academic publication. Then they became lovers. When they told his family, though, they accused her of sexual assault and took away D.J.’s communication device. In the second, D.J. was never able to communicate, and Stubblefield unknowingly manipulated his communications, deluded herself into believing they were in love, and raped him. In the first, she is going to jail and he is trapped without the power to communicate. In the second, she abused a defenseless individual.
For the judge, only the second story was possible...The refusal to consider even the possibility that D.J. might be a person, able to move, to communicate, to desire, to consent, solidified the single story of the worst-case scenario. The jury accepted this narrative, grafting their own ideas about the undesirability of disability onto D.J.’s body. Reporter Bill Wichert interviewed a juror who “couldn’t understand” the relationship between Stubblefield and D.J. once she saw D.J. in court. “I was like … ‘You’re going to leave your husband and your kids for someone like this?’”
No answers, but if we don't at least consider the possibility of possibilities, people with disabilities becomes more dehumanized, not better protected.

Wednesday, December 28, 2016

2016 in Review: Disabled People Need Not Apply

I'm going to post a bit about some of my favorite pieces from 2016, starting with Al Jazeera America, which sadly shut down in April of this year.

Last February, though, I became aware of an ad for The Arc - TX, which had anti-disability clauses written into the requirements. I blogged about it, called for comment, and they quickly changed course. But when I posted, a philosophy friend on Facebook said that she had seen similar clauses mandating walking, sitting, standing, seeing, hearing, and carrying heavy weight in professorial jobs.

I was baffled, but dug into higher education job sites, and found that Human Resource Departments around the country, especially in public systems (most of New Mexico, all of Arkansas, some of Texas, some of MA), had stuck these boilerplate clauses into all their ads.

If you're not disabled, you probably never noticed. Believe me, though - or better yet believe the people I quoted - if you are in a wheelchair and the job says, "you have to walk," or even "climb stairs and ladders," - you don't apply.

So I wrote:
Unintentional discrimination is still discrimination. Boilerplate clauses keep disabled people from even applying for jobs. “Requirement creep,” likely put in place by HR professionals eager to avoid trouble, exacerbates discrimination and could, if someone had the time and money, lead to legal trouble. Without deliberate change, unemployment will continue to be the biggest problem facing Americans with disabilities. It’s time for employers to take a hard look at their hiring practices.
Here are the pieces:
The first was in particular extremely widely read. More importantly, for the next month, I received email after email from universities telling me that they were changing their policies. 

I'm blogging this today to ask you to keep an eye on these requirements. I'm happy to do the work contacting HR departments if you see more ableist requirements. We change this institution by institution.

Tuesday, December 27, 2016

Declaring Dominican University a Sanctuary Campus

My university, Dominican University, has declared itself a sanctuary campus. We have a long history as a national leader in supporting the rights of undocumented students to access higher education, including regular fund-raising to make that possible. In 2014 I wrote:
Over the last few years at my Roman Catholic university, we have begun to act, both admitting and financially supporting undocumented students. It may seem risky, but as Donna Carroll, our president at Dominican University, always says, "It’s the right thing to do."
I saw our position around these issues as the strength of both being small (so a single act of leadership can really change course) and mission driven. I wrote:
Catholic colleges must commit to a core and challenging set of beliefs, but they do get to choose what to emphasize and where to concentrate resources. At their best, faced with the same financial pressures as all other institutions, Catholic colleges and universities have a mission that allows them to make arguments about justice, even ones that might risk alienating donors of particular political ideologies or even running counter to ideas held by some within the church. Dominican University provided health care to domestic partners for same-sex couples years ago because the universal right to health care, part of the dignity of the person, trumped other concerns. As Donna Carroll notes, "As the infrastructure of higher education become more and more like a business, it’s harder to take a stand that may compromise the business." Commitment to mission allows you to take such stands because they are right, not because they are wise.
Of course, such a position is also fiscally wise. We are a majority Latinx institution. We need to listen to and serve our core community.

Here's a link to the full statement of declaring Dominican a Sanctuary Campus.

Key passages:

BE IT RESOLVED, that Dominican University commits to a campus climate and an academic experience that promote the security and well-being of all persons, especially those who are underrepresented and struggling for voice and opportunity. To that end, as directed by the Family Educational Rights and Privacy Act (FERPA), the university will not provide access to student information, including any records that identify immigration status, except as required by federal, state or local laws, and only in the presence of formal documentation.
FURTHER, we affirm and will advance, to the extent possible, the 2011 Ruling by the U.S. Immigration and Customs Enforcement (ICE), which notes that law enforcement and ICE officials should enter the campus for law enforcement purposes without the permission of the university only under the most exigent and compelling circumstances.
FURTHER STILL, the university will continue to support undocumented students --- to promote academic access and success, provide financial aid, as possible, and ensure that Dominican University is a welcoming and safe environment for all, regardless of background.

I don't know if such declarations make a difference (though the money obviously does). What I do know is that it's the right thing to do and we all need to practice taking moral public positions, as the next few years will test us in that regard.

Sunday, December 25, 2016

The GOP Theocracy: Xmas vs Hanukkah Statements.

The RNC puts out messages on holidays. Here’s the text for Hanukkah:
“As our Jewish friends and family around the country gather to light the first candle, we hope they will enjoy a special time of closeness and joy this Hanukkah season. These eight nights serve as a reminder of how the Maccabees never gave up hope amidst danger and uncertainty, and each year the Festival of Lights is a time to reflect on the power of faith and perseverance. We wish a Happy Hanukkah to all who are gathering around the menorah, and pray this year’s festivities will be a time of celebration and blessings for our Jewish communities.”
And here’s part of that they say for Christmas:
“Merry Christmas to all! Over two millennia ago, a new hope was born into the world, a Savior who would offer the promise of salvation to all mankind. Just as the three wise men did on that night, this Christmas heralds a time to celebrate the good news of a new King. We hope Americans celebrating Christmas today will enjoy a day of festivities and a renewed closeness with family and friends.
Some people have read the “this Christmas … a new king” as referring to Trump. That’s not how I read it, but I understand why others do. Still, it's not an uncommon way of writing in that circle. Just as every Easter, “He is risen,” the present tense reflects a fairly standard American Evangelical phrasing that has now extended to anglophone Christianity everywhere.

It’s still a revealing statement.
  • Notice the “As our Jewish friends” vs “We.”
  • Notice the simple statement of theological belief as fact for the Christian statement.
I want you to imagine for a moment, as hard as it is, that a major USA political party put out a statement just casually affirming the belief that the Jews, and only the Jews, are God’s chosen people? Even harder, imagine a statement affirming that Muhammad, peace be upon him, is the last true prophet of God. That’s the equivalent here — a basic presumption that everyone believes in Christian theology and there’s no reason not to affirm that in a political party’s messaging.

We should realize, once more, that the GOP believes only Christians are real Americans, that it represents the wishes only of Christians, that it wishes to make Christianity even more dominant (legally dominant, rather than merely culturally dominant), and is complicit in the outpouring of hate against non-Christians.

The message of most Jewish holidays is often jokingly summarized as: They tried to kill us, but they didn’t kill (all of) us. Let’s eat. The roast is in the oven. Remember to #Resist.

Friday, December 23, 2016

Breitbart and Fox News Save [A] Christmas [Carol]!

A few days ago, would-be theocrat Todd Starnes, a Fox News Christianist pundit, published and performed an inflammatory segment about a school district canceling A Christmas Carol due to complaints from local families over its reference to God. He picked it up from local news alleging the family was responsible, something the principal has denied. Although Starnes noted that the principal blamed time away from curriculum (thus allowing a dig at Common Core too) late in the article, he led with "Parents told local reporters the play was canceled because two parents complained about a line in the Charles Dickens holiday classic."

Breitbart picked up the story and intensified the violence by putting up a picture of a Nativity Play in a church for a story about A Christmas Carol. Their article further projects this story as an attack on Christianity by two intolerant parents and a wimpy school official.

Neither the Fox News nor Breitbart story identifies the parents or speculates as to their religion. Both, however, clearly intended to target their two parents, while remaining within the realm of legally defensible journalism. The art accompanying the Breitbart story is particularly offensive.

The local online paper, Lancaster Online, ran a story about the family - who turn out to be a Jewish couple - "fleeing" town after reading comments in Breitbart demanding they be identified. Here's the key direct quote:
The Jewish student’s parents say some of the reactions to the stories frightened them.

After seeing reader comments like “It would be nice if we had the addresses of those concerned citizens and, I bet, this info is known to people living in the area” on the Breitbart story, the parents pulled their child out of school and headed out of the area for a bit.

“There’s no way we’re going to take a chance after the pizza incident,” they said, referencing the man who fired an assault rifle in a Washington D.C area pizzeria after reading a fake-news story that said Hillary Clinton was running a child sex ring out of there.
UPDATE: See below for Lancaster Online's response to the ADL's statement.

That quote flew wildly around the internet. It was a direct quote from a reporter on the ground, which is pretty much what journalists take as truth. Then later, the Anti-Defamation League issued this statement, calling the allegations of a family fleeing untrue and damaging.
“News reports alleging that a Jewish family has ‘fled’ Lancaster County are untrue and damaging,” said Nancy Baron-Baer, ADL Regional Director. “We spoke with the family, who explained that they went on a previously-planned vacation for the holidays. Stories like this can sow fear in the Jewish community and beyond, and it is important to stop the spread of misinformation.
It is striking that the ADL does not reference the Fox or Breitbart stories. The statement comes across as angry at the idea that Jews might flee, while ignoring the inciting incidents. Moreover, there is a clear conflict between the direct quotes from the family and the indirect quotes here.

So what happened? 

Here's what I do know.
  1. The news stories were inflammatory, and deliberately so.
  2. The family left town.
  3. The local reporter has a direct quote.
  4. The ADL has an indirect quote.
  5. Anyone who takes the ADL's statement as simple truth, ignoring points 1-4, is making a mistake.
UPDATED 12/24 7:00 AM - Confirmed the family left town one day early over concerns about local harassmentIs that "fleeing?" We are in a semantic debate here, but the ADL statement had such power, generating all kinds of FAKE NEWS headlines and tweets from major reporters, that forever this incident is going to be about motivations for leaving town - were they just worried or afraid - and not about the harassment. 

The premise of the story is that the family became aware of increasingly hostile comments on Breitbart, so yesterday I spent a few hours reading the 1200 comments or so on the story. I tweeted, with screenshots, a tiny fraction of what I found, mostly under the hashtag #BreitbartComments. They were super interesting. Hundreds of anti-Muslim comments before the focus intensifies on Jews. Whole strings of debates about the Crusades, about how feminists are ugly, about whether God exists (there's an atheist, and not a nice one, trolling in there). Hundreds of comments wondering why the rights of minorities should be protected over the will of the majority. And a distinct set of comments demanding the complainers be identified, with some direct and indirect threats of violence.

Here is a key example:

Would I have fled my home in the face of such comments? Probably not. Would I have been glad to be leaving town were such a story trending about me? Yes, definitely. 

Next month, I'll say more about Breitbart's decision to use the Nativity picture, in a long piece for Pacific Standard on blood libel and modern anti-semitism. One of my fears is that I'll have to cut the paragraph on this story and replace it with whatever new horror unfolds.

UPDATE 12/23 12:00 CST - Lancaster Online stands by their reporting.
Editor’s Note: This story has been amended to reflect further comments from the parents of a Centerville Elementary School student who removed their child from class over concerns for their and their child’s safety. The parents told the Anti-Defamation League Thursday they were traveling on a previously planned vacation. The family told LNP and LancasterOnline their child was being harassed and blamed for the cancellation of “A Christmas Carol,” and that they were concerned for their and their child's safety. LNP and LancasterOnline stand by the original reporting on this story.

Thursday, December 22, 2016

Books are Awesome (Returned Citizens go to Berkeley)

The New Yorker has a piece on formerly incarcerated people going to UC Berkeley. It's long and interesting, with many good tidbits about life in prison, life in college, structural obstacles, but also genuine opportunities. 

But I want to quote a few bits on how awesome books are. This is Murillo.
At first, he read the kind of genre fiction that was available in the shu: Dean Koontz, James Patterson, Dan Brown. But one day when he was out in the yard—in solitary, the “yard” was a small concrete enclosure that had high walls but was open to the sky—a man on the other side of a wall told him that he should stop reading crap and get some good books from the prison library. After that, Murillo had many conversations with the man about books, although he never saw his face.
The man told him to start with Voltaire’s “Candide.” Murillo read it, and was amazed at how resonant it was—its depiction of the slave sounded very similar to what he’d heard about sweatshops. He came across a list of American novels with social-justice themes, and he read “To Kill a Mockingbird” and “The Grapes of Wrath.” He read “Don Quixote” and “Les Misérables.” He read about the Zapatistas, and about how the Spanish had pillaged Latin America.
Candide! Voltaire changed this man's life.

Here's Czifra:
The one good thing about solitary in Y.A. was a big box there containing hundreds of books. He read until all that was left was a volume of Shakespeare, with four plays in it. At first, he found the language nearly impossible to understand, but he had nothing else to do, so he kept at it. He gradually realized that it was better than anything he’d read before, and he looked for more. He decided that his favorite play was “Richard II,” because of the way it forced you to confront a disagreeable man-child who ruined his life and killed people, and yet, by the end, made you feel compassion for him. When he finished with the Shakespeare, he wrote to a librarian, who sent him ancient-Greek literature in translation. He read Milton and Wordsworth and Dickens.
Also interesting, if less happy, is the white supremacist read of Shakespeare.
Czifra started reading Shakespeare because it happened to be in the Y.A. book box, but adults in prison tended to read Shakespeare for a different reason. Shakespeare plays were handed around by white inmates to bolster racial pride, being a testament to European culture. “Julius Caesar” was a favorite—Caesar had many lines that they felt expressed their code, such as “I love the name of honor more than I fear death” and “A coward dies a thousand times before his death, but the valiant taste of death but once.” White inmates tended to think of themselves as imprisoned warriors, like modern-day Vikings, and they particularly liked violent epic sagas, such as the Iliad, the Odyssey, the Aeneid, and Beowulf.
There's a lot here on reading, on self-reflection, on the examined life. I am struck, as I so often am in these narratives of class, race, and literature, how we're designing higher education to make sure that if you want to read Candide, you either have to be rich (and go to a rich liberal arts school), or be in jail and have nothing but time.

You shouldn't have to be in solitary to encounter Richard II. But also, for those who are in solitary, let's make sure that we keep funding educational opportunities even as we try to decarcerate America.

Wednesday, December 21, 2016

Missouri: The School-to-Prison Pipeline Needs Some Grease

The State of Missouri has passed a new statute that will treat school fights as a felony. With credit to the journalist Sarah Kendzior (see the tweet above), here's how a local school district is interpreting it:
Dear Parents/Guardians:
We want to make you aware of a few new State Statutes that will go into effect on January 1, 2017, which may have a drastic impact on how incidents are handled in area school districts.
The way the new statue reads, if a person commits the offense of an assault in the third degree this will now be classified as a Class E Felony, rather than a misdemeanor. If he or she knowingly causes physical injury to another person (hits someone or has a fight with another individual and an injury occurs) – one or both participants may be charged with a Felony.
What does this mean for students?
For example, if two students are fighting and one child is injured, the student who caused the injury may be charged with a felony. Student(s) who are caught fighting in school, bus or on school grounds may now be charged with a felony (no matter the age or grade level), if this assault is witnessed by one of the School Resource Officers/police officers (SRO) or if the SRO/local law enforcement officials have to intervene.
Hazelwood is a St. Louis suburb just northwest of  Ferguson, for reference. It's majority white, but with a substantial (35% or so) non-white population.

This law will be enforced unequally. Yes, the law is the law, but enforcement of the law - what behaviors are or are not criminalized - will be refracted through all the individual and systemic biases of American society.

A few key phrases:
  • "No matter the age or grade level" - 5 year olds will be charged for fighting.
  • "If the assault is witnessed" - The presence of SROs in the school intensifies the likelihood of criminalization, rather than peace.
The law will result in children of color, disabled children, and especially disabled children of color being criminalized, incarcerated, and otherwise removed from society. That is the intention of such laws. The school-to-prison pipeline is not an accident or side-effect. It's working as designed.

Smiling parents and administrators will counter, "just don't fight!" And then when kids fight, "You shouldn't have fought! You should have complied with rules." And thus the #cultofcompliance will help grease the school to prison pipeline for marginalized children.

Tuesday, December 20, 2016

Disability and Media: Inspiration Matters

Here's a nice story about Craig Blackburn, a man with Down syndrome who plays Santa. It could so easily veer fully onto the Inspiration Porn side of the disability news spectrum (it's not an either/or), and the title does go that way. "Metairie man with Down syndrome spreads cheer now and throughout the year" suggests that the story will be about how people feel about the man, rather than centering him.

But that's not what we get:
  •  Blackburn gets to speak for himself. The whole story is not about how others feel about him. "Blackburn said his goals are simple: "To impact the lives of others by advocating for issues that will result in better lives for individuals with special needs. Success is not measured by competing with others, but by each individual living life to their greatest potential.""
  • He speaks about his achievements: "I met all the requirements, never failed a class nor did I have to repeat a grade," Blackburn said. Now Blackburn volunteers a good portion of time doing work for the community, making it a full circle of sorts."
  • The article talks about his broader life: "He has served as a motivational speaker since 2004. He travels independently throughout the United States delivering the messages of inclusion, ability and full participation in life for all individuals. In 2009, He delivered his first international speaking message in the Middle East in Doha, Qatar."
As I wrote about Alice Wong, the disability community needs inspiration. We need to be inspired by people doing inspiring things, not by disabled people just doing things at all. I'm especially interested in seeing norms shift in local news like this, for all the big national outlets do matter. This article is, in my estimation, a win.

Monday, December 19, 2016

Tell Me Your Stories - My New Column at Pacific Standard

I am pleased to announce that I will be joining Pacific Standard as a regular internet columnist on politics and culture, starting in January. I will be producing reported features, opinion columns, interviews, and other pieces, focusing around history and disability rights, both construed as broadly as possible. Here's my editor:
Two main points.
Pacific Standard is a publication with a mission to tell stories, "across print and digital platforms about society’s biggest problems, both established and emerging, and the people attempting to solve them." I've been working them since I saw a tweet from Ted in 2015 calling for Halloween pieces. I wrote about my son and his dislike of Halloween, the social model of disability, and my need to at once respect his desires while exposing him to new things. I followed with essays (largely collected here) on school abuse, sexual violence, food culture, speculative fiction, crowdfunding, murder, and politics.

I'm especially excited about the different kinds of pieces I'll get to produce for Pacific Standard, encapsulating many components of the idiosyncratic body of work I've produced over the past four years. Reported pieces, reactions to breaking news, interviews with people trying to make a difference in this world, analysis of new studies and findings, and cultural criticism of all sorts. Disability rights, higher education, the ways that history infuse contemporary subjects.

I am, of course, especially worried about the human impact of our new government. I'll be watching carefully. I want to hear your stories, your ideas, your questions, to be intentional in the voices I highlight and to hold myself accountable for the essays I write.

This blog will continue in 2017, but more as a place for links and quick ideas that I may later expand into full pieces. I've never had a writing home, so this may take some getting used to, but I am grateful to Pacific Standard for this opportunity. I don't plan to waste it.

And I'm grateful to you for reading.

Buzzfeed: Psych Wards Lie

Like many good pieces of journalism lately, I think this one slipped out of notice for far too many people. BuzzFeed reporter Rosalind Adams has put together an excellent expose of the way that psych wards trap individuals in order to maximize profits.

Summary: Healthcare for profit is good for profit and bad for health. Which we knew, but it's good to have details as we head into Trump's "for-profit presidency."
A yearlong BuzzFeed News investigation — based on interviews with 175 current and former UHS staff, including 18 executives who ran UHS hospitals; more than 120 additional interviews with patients, government investigators, and other experts; and a cache of internal documents — raises grave questions about the extent to which those profits were achieved at the expense of patients.

Current and former employees from at least 10 UHS hospitals in nine states said they were under pressure to fill beds by almost any method — which sometimes meant exaggerating people’s symptoms or twisting their words to make them seem suicidal — and to hold them until their insurance payments ran out.
A state-funded 2011 report on one Chicago hospital found “woefully inadequate” staffing levels, a “repeated and willful failure by UHS officials to ensure that their staff were properly trained,” and a pattern of admitting more patients than it had room for “in an effort to maximize financial profit.” Investigators also flagged broader concerns, citing “troubling reports suggesting a pattern of quality of care issues, harm to patients, or major healthcare fraud charges involving UHS-operating facilities in a dozen other states.”
It's a long-read, filled with upsetting personal narratives. Read THE WHOLE THING if you can.

Friday, December 16, 2016

JRC: Abusive Institution Hires Abusive People

Two men who worked at the Judge Rotenberg Center in MA have been charged with repeated abuse of one of their clients. Some graphic details follow. Notice how the suspects use "he was dangerous" to justify their abuse. From MassLive, my emphasis.
Police say video surveillance footage from the Judge Rotenberg Educational Center (JRC) shows two employees beating and spitting on one of the school's students, according to The Patriot Ledger.
Police arrested Mohamed Tarawally, 36, of Boston and Claude Guerrier, 24, of Brockton and charged them with multiple accounts of assault and battery on a disabled person. Tarawally also faces a dangerous weapon charge for repeatedly whipping the student with his belt.
The men are accused of attacking and threatening a student with disabilities at various times in October and November, the Ledger reported.

Authorities were alerted to the trouble at the facility after the company that monitors the center's surveillance footage tipped off JRC staff, who then called Randolph police.
Police said both men admitted to the assaults, saying they didn't intend to cause pain but were worried that the student, who has a tendency to lash out, could hurt them.
However, Randolph police wrote in their report that the footage does not seem to show the two men acting out of fear or self-defense, the Ledger reported.
The JRC, as a site, is dedicated to the use of pain to control the behavior of disabled children. It's notorious for deploying electric shocks. It should be shut down. Here's an essay by Shain Neumeier on the center.
How is this legal?" This is one of the first questions people ask when they hear about what happens at the Judge Rotenberg Center, a residential school for disabled children and adults just south of Boston. For decades, JRC has worked off a treatment model of reward and punishment — punishing its clients severely when they misbehave. In particular, JRC is the only program of any kind in the United States to use electric shock as a form of behavior modification.

This form of punishment is very different from electroconvulsive therapy, which is used to treat depression; it’s much more like the use of a shock collar in training a dog. JRC aides use two different types of remote control devices to shock students on their arms, legs and torso in response to dangerous or potentially dangerous behavior. The weaker of the two is 15 times more powerful than an actual dog training collar, and has been described as feeling like being attacked by a swarm of wasps. The devices have been known to cause first-degree burns and to occasionally malfunction, shocking someone other than the intended target or activating completely unintentionally.
The public first saw what JRC’s shock treatment looks like in 2012, when a video of it was released as part of a lawsuit against the facility. The video shows 18-year-old Andre McCollins, an autistic black man, screaming and begging as JRC staff shocked him repeatedly while he was in restraints. The first shock was punishment for refusing to take off his jacket when he came into the room. Every shock after that was for screaming and tensing up in response to being shocked.
There have been no peer-reviewed studies that show that this is an effective way of creating lasting behavioral change. Even JRC’s own research suggests that shock results in only temporary improvements in behavior more often than not, so “treatment may be required … on a long-term basis.”
Shut it down.

Thursday, December 15, 2016

RESOURCE: Elderly Individuals and Police

I'm working on a piece on elderly individuals killed or beaten by police. Here's four stories from NY, IL, CA, and AL - which is to say spanning the country.

  • Francisco Serna: Dementia, 73, Latino, carrying a crucifix, out for a walk. 
  • Deborah Danner: Schizophrenia, 66, Black, naked and armed with a knife, in her apartment.
  • Sureshbhai Patel: Didn't speak English, 57, Indian, unarmed but deemed noncompliant, in front of his son's house.
  • John Wrana: Dementia, 95, White, allegedly holding a knife, in a nursing home.
These cases follow the same patterns as the shootings of many other disabled people, but due to their age, allow for different kinds of persuasive arguments.

More to come. What cases should be added to this set?

Wednesday, December 14, 2016

RESOURCES: Campus Speech after Trump

I'm beginning to collect pieces on campus speech issues for a future essay.
  • Johns Hopkins suspends an adjunct for racist jokes. Does so using a process that does not seem to have been clear to anyone. Prof says he was just joking around.
  • UCLA prof gets mad at someone on Facebook and says she'll do less for disabled students as a result. I have a query in. Right to be a jerk on Facebook is protected by academic freedom. 
  • Nick Kristof does zero minutes of research on who students are, taunts Oberlin, RTs only famous white guys who share his opinion (Scarborough, David French, Larry Summers, Ron Fournier)
The students who populate these campuses are clearly not what your piece suggests as a study on higher education reveals: “The National Center for Education Statistics reports that of the 17.6 million people enrolled in college in the fall of 2011, only 15 percent were attending a four-year college and living on campus. Thirty-seven percent were enrolled part time, and 32 percent worked full time…More than a third were over 25, and a quarter were over 30. By 2019, the percentage of those over 25 is expected to increase by more than 20 percent.”
In other words, the college campus of which you write is an outlier. It is not typical. The new traditional student is not eighteen, probably commutes to school, may not attend full-time, and would find the college campus you describe to be quite alien.
  • Robby Soave, education reporter for Reason who spends most of his time taunting liberal students (way to fight for freedom, Robby!), cheers on Bernie Sanders for attacking "political correctness." 
    • I find the claim - DON'T POLICE SPEECH TOUGHEN UP - matched with Soave's - DON'T SAY RACIST - ironic. 
    • My problem with libertarianism, generally, is that it creates principles devoid from attention to the realities of power. So a CEO's speech needs just as much protection as a homeless non-white college student. Specifically, the great threats to academic freedom come from adjunctification, the corporate takeover of college, the defunding of public college, and more. Many libertarians realize this and craft a practice based on principles but responding to threats. At some point I'll go look through a few hundred Soave columns, but today is not that day.

Tuesday, December 13, 2016

Bad Disability Journalism: Disabled Adults are not Children

Here's a major feature on caring for two intellectually and developmentally disabled children in Australia. The parents wanted people to "know what it's like, to advocate for more resources, more good housing options, and so forth.

The critiques of this piece could be many, but here's the one I want to focus on: The parents, and the reporter, and the headline continuously repeat the narrative that these 24-year-old women are "like three year olds."

They are not. Just look at the pictures - watching YouTube, shopping, reading the papers, and so forth. They may not be neurotypical, but they are not children. They may require intense levels of support, and I am a strong advocate for such supports. But they are not children. 

Friday, December 9, 2016

On Being a Cripple - The Work of Nancy Mairs

Nancy Mairs: A great writer on disability, physicality, sex, pain, meaning, and more has passed away:

Here's the NYT obituary.
Ms. Mairs was a budding poet in her late 20s, suffering from agoraphobia and depression — she had once attempted suicide — when she was told that she had M.S. The inexorable progress of the disease provided her with her richest subject, as she wrote of her fears and hopes, her resolve to push against her limitations and her aversion to such euphemisms as “differently abled.”
“I refuse to participate in the degeneration of the language to the extent that I deny that I have lost anything in the course of this calamitous disease; I refuse to pretend that the only differences between you and me are the various ordinary ones that distinguish any one person from another,” she wrote in the introduction to “Plaintext: Deciphering a Woman’s Life” (1986), the essay collection that established her as a fierce, funny, feminist voice. Her essays “On Being a Cripple” and “Sex and the Gimpy Girl” made the point, defiantly.
“To view your life as blessed does not require you to deny your pain,” she wrote in the introduction to “Carnal Acts.” “It simply demands a more complicated vision, one in which a condition or event is not either good or bad but is, rather, both good and bad, not sequentially but simultaneously. In my experience, the more such ambivalences you can hold in your head, the better off you are, intellectually and emotionally.”
I'm most familiar with her essay "On Being a Cripple," a version of which is hosted here:
First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People–crippled or not–wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.
Go read it. It's worth your time. And remember Nancy Mairs.

Thursday, December 8, 2016

Bradley King - Alone, in Crisis, Contained, Armed with a Small Knife

We see this story too often. I don't have all the details on this case yet, and sometimes the details better explain the decision to use lethal force.

But this was a person alone in his home with a knife, who had called 911 for help, and ended up killed by the reserve deputies who arrived to check on his welfare.

I'm struck by local media. The reserved "officer-involved" to characterize the police actions, but "lunging" and "brandishing" to describe the victim.

Again, I can't say that this killing was or wasn't avoidable. I just know I see it far too often.

Wednesday, December 7, 2016

ACTION: Call to oppose the 19th-century cures embedded in the 21st Century Cures Act

Today a huge omnibus bill that reflects the worst of American lawmaking is going to move through the GOP Congress, probably with wide bipartisan support, and then will be signed by the president. It surely has many perfectly good things in it, but is intended to make it easier for Big Pharma to test drugs, restricting the FDA. It's a splending "No Lobbyist Left Behind" act, the kind of thing Congresses love to pass quietly in December with a lame duck president.

Yes, I'm not a fan. Call your Senator. Do it today. I put a script at the bottom for emails/calls (but calls work best).

Worse, the bill acquired some of the language from the so-called Murphy Bill, a piece of legislation designed to make involuntary committment easier for caregivers of people with mental health conditions. This is, as I wrote about a year ago, the wrong way to go about it.
“This is out and out promotion of irrational prejudice based upon disability,” Mike Bachluber, Co-Chairperson of National Council on Independent Living ADA/Civil Rights Subcommittee, told me about the bill. Robert Bernstein, president and executive director of the Judge David L. Bazelon Center for Mental Health Law, said that Ryan’s bill is not only “misguided” but “fails to address the real problems in the mental health system.”

We do have plenty of problems in that system. Bethany Lilly, a policy attorney at Bazelon, told me that right now the system has substantial gaps in services, and H.R. 2646 would just pour more money on the most coercive elements of how we respond to people in crisis: court-mandated treatment and asylums. Instead, she said, “We need to invest in intensive community-based services that people need,” such as access to providers, supported housing, assertive community treatment teams that help individuals live in a community and many other services intended to help people from getting into crisis in the first place. Such services are both cheaper and more effective than institutions or forced medication. But they also require embracing the principles of inclusion and accommodation.
Instead, the Murphy-approach is to institutionalize. Here's a piece from NCIL (National Council on Independent Living) on opposition to Mental Health Provisions.
The inclusion of language from H.R. 2646 in the 21st Century Cares Act will be incredibly dangerous for our community. While some of our concerns with H.R. 2646 were addressed prior to its June passage, the Murphy Bill is still harmful to people with disabilities. The language related to mental health that is included in H.R. 34 still promotes institutionalization, still increases funding for involuntary outpatient commitment, and influences new HIPPA rules to lessen privacy for people with psychiatric disabilities. It is important to note that the bill pays for more institutionalization of children by requiring states to use Electronic Visit Verification systems, which can make people who use personal care or supportive home care prisoners in their own home. We cannot let this dangerous language become law!
Some coverage of 21st century Cures:

 I called Senators Kirk and Durbin in their Chicago offices yesterday. Call your Senators today. Here's a script written by a friend who did not want to be named.
My name is [your name]. I am a constituent of Senator [Senator’s last name]. I am a [your relation to disability community]. I am calling to ask Senator [Senator’s last name] to oppose the 21st Century CURES Act.

The bill has mental health provisions that will hurt people with mental illness by increasing crisis care in hospital settings. Little data exists on the quality of crisis care in these settings. People with mental illness should get community-based crisis prevention to have a better quality of life.

The bill also provides for an electronic verification system for people with disabilities who use service providers to help with their needs. The verification system only works from a home landline, and it will hurt many people with disabilities’ ability to move throughout the community. This will impact their quality of life.

Thank you for listening. I hope the Senator will consider my concerns, and help keep people with disabilities out in the community by opposing the 21st Century CURES Act.

Tuesday, December 6, 2016

Disability under a GOP Majority: The Case of Texas

Last week I ran a piece on life for PWDs under the GOP majority in Kansas, where the waiting lists are endless (and that's not even counting the people who have given up and aren't even on the lists!). 

Let's talk Texas:
More than a year after lawmakers originally ordered it, Texas announced Monday it will enact significant cuts to the money that it pays therapists who treat vulnerable children with disabilities in two weeks.
Medicaid reimbursement rates are used to pay for pediatric therapy services provided to disabled babies and toddlers. Carrie Williams, spokeswoman for the state's Health and Human Services Commission, said that Texas will apply cuts on Medicaid rates on Dec. 15 in attempt to achieve savings directed by the Texas Legislature in 2015.
"The most important job we have is making sure kids have the services they need and that we are responsible with taxpayer dollars," Williams said in an e-mail. "We will monitor the reduction of rates to ensure access to care is not impacted and that Texans around the state receive the much-needed therapies required to improve their lives."
In magical thinking budget land, you can cut funding but not impact services. Many of these services, in fact, are pretty cheap, applying early intervention to kids who then don't require more expensive services later (I wrote about Rauner's attempt to do these kinds of cuts in Illinois).

Note: The House Speaker vows to reverse cuts. I will believe it when it happens.

And be sure to "read the related coverage."
Magical-thinking budget land where less doesn't mean less because a lawmaker says so, without studying the issue, is dangerous to people with disabilities.

UPDATE: Speaking of Texas, see how they are trashing their special education system.

Monday, December 5, 2016

SUPPORT: The Disability Visibility Project

The Disability Visibility Project (DVP) was created by Alice Wong during the 25th Anniversary of the ADA. With no resources other than a partnership with Storycorps, Wong carved out a critical space in the disability rights movement that has pushed these powerful ideas: Be visible, be present, tell your stories, demand to be heard, support others in doing the same.

Later, Wong teamed up with Gregg Beratan and Andrew Pulrang to create #CripTheVote, a powerful online activist network of people working to politicize and organize disabled individuals and communities.

The DVP NOW HAS A PATREON AND YOU SHOULD SUPPORT IT (if you do Patronage, which many of you do!). Wong writes:
Your donation will help make stories accessible and shareable. Take a listen to some oral histories by disabled people from the Disability Visibility Project™ (transcript in link):
Instead of rewards, your contribution will sustain the Disability Visibility Project™ and allow it to expand and grow. All of the content is free. Your donation will do the following:

Support Disabled Writers
Support Accessible Media
Support Disability Culture and History
Support Disability Media
Support Original Work and Activism

Here are some examples of what your donation will pay for:

Guest blog posts by disabled writers.
Transcription of audio and video for accessible media.
Community-based projects and events highlighting disabled lives.
Disabled artists, educators, and writers to create curricula and other materials for research, cultural, and educational purposes.
Freelancers to assist with audio production and other activities for the DVP website.
Monthly fees associated with web hosting, cloud storage, and multimedia (specific amounts here).
Events and presentations about disability history, culture, and activism.
Depending on the fundraising goals reached, a DVP podcast that will feature a roundtable discussion on the critical issues facing disabled people today.
My time, energy, and labor. I will be focusing on the DVP full-time starting January 2017.
Note that last bullet point. Wong has done all this without resources as a part-time job. It's time to help her make the leap to full-time community organization and leadership.

I'm going to make a Patreon account for the first time and donate. Join me.

Friday, December 2, 2016

"Follow the Money" - What's the First Question?

So I tweeted this during one of Trump's latest online spewings. A lot of people shared it. Many responded, "Fuck you, asshole, I can pay attention to more than one thing at a time."

This debate has played out across not just social media contexts, but in the formal media, as journalists around the country and the world try to figure out how to cover a candidate who shares inflammatory lies in nearly every context, is completely unashamed by hypocrisy, revels in dominance displays (including his ability to generate controversy), has yet to hold a real press conference, and otherwise is unlike any president of the United States in modern history. I think this was the "millions of fraudulent votes" tweet, but honestly I can't even remember.

It's not that the tweets don't matter, because of course they do. This is, though, a message to journalists not to focus merely on what Trump says, but what he does. It's true that most humans can pay attention to many things at a time, but when Paul Ryan, Kellyanne Conway, or Reince Preibus takes questions (since Trump never will), what's the first question?
  • How do you react to Trump tweeting that there were millions of fake votes? 
  • How do you react to Trump tweeting that there were millions of fake votes despite evidence?
  • The Constitution forbids Donald Trump from receiving foreign payments. How will he resolve that?
  • Jeff Sessions has a long history of explicit racism. Should he be AG?
  • David Clarke had a baby die in his jail recently. Is he qualified to run DHS?
  • Betsy DeVos has never been an educator? What, other than being rich, are her qualifications for DoE?
And so forth. Questions on the ACA, on vaccines, on the 1300 jobs Carrier is sending to Mexico.

What's the lede? What's the headline on A1 of the New York Times? You only get one lede, one headline, one first question, one chyron across the screen. So while individuals can, and MUST, follow multiple storylines at once, there's only one lede.

Right now, Trump has the ability to control that first question through tweeting. I don't think that's optimal. 

Because someday Trump will be bombing people and he'll tweet something inflammatory about, I dunno, Moana or something. How can we help the press ask the right question?

Thursday, December 1, 2016

How to Create a United Left?

There's been a tendency among left-wing pundits and internet shouters to claim that the election's outcome demonstrates that whatever we previously believed to be true is, in fact, true, and that you are wrong. The crowning example was an NYT Op-ed against "identity politics," but it's happening constantly. Bernie vs Hillary still rages through my twitter feed with an intensity not seen since May.

I am guilty of this. Bernie says something ("I'll work with Trump," "I'm not joining the Democratic Party," "We need diversity BUT also working class." I start yelling about it or sighing about it (I have liked Sanders for a long time. I still like Sanders) and then Berners jump into my mentions and yell at me and I yell back and then we block mute and the Left remains divided.

So here we are.

I don't know how to defeat Trump, Trumpism, and the particularly savage version of American conservatism that has taken hold. I know, though, that we need to articulate visions that are inclusive of multiple styles of liberal thinking, that recognizes historic and contemporary inequalities of all sorts under a rubric of joined struggle for a better America. I honestly thought Clinton's "stronger together" motto and policies did a good job of that, but clearly not quite enough of white America agreed.

Still, her massive win in the popular vote ought to push back at the "failed candidate" narrative, even as we should all agree her campaign put energy into the wrong places (AZ rather than Rust Belt). They believed their data. They campaigned based on their data. The data was wrong.

What's next?

When I was just leaving Minnesota, a young black man named Keith Ellison won the Democratic primary in one of the most liberal districts in America. I didn't live in the district, so I just observed, but I was impressed at the way he rallied diverse elements of the community around him. He was a Muslim and he rode the 2006 wave to Congress. Now he wants to run the DNC. I support his candidacy, as I believe the DNC should be led from the Left, not the middle. He is, of course, being attacked for being too Muslim.

Here's what he has to say, via an interview with ThinkProgress (READ THE WHOLE THING! ITS GOOD!)

1 - On Labor, where the Democrats have grown weak:
I also think [the DNC] is perceived as too top-down. We do a good job at fundraising from labor and having them go knock on doors, but they’re not at the table enough. The party needs to have the labor voice featured at the table much more prominently. They could help us form the message and deliver the message. They don’t feel as included as they should be.
2 - On fighting the GOP without the belief that there are norms:
There is one other basic fact that Democrats have to come to grips with: that character assassination is item number one in the Republican playbook. Whether they’re saying Obama’s a Kenyan or making a big hairy deal about Hillary Clinton and Benghazi, these are not sincere allegations. Their purpose is to make sure that instead of talking about your plan, you’re defending yourself from these falsehoods.
 3 - On identity and class. He rejects the choice:
Well, the party needs to be very clear that we have to stand for a strong, populist economic message and we have to care for everybody’s rights and uphold everyone’s human dignity. If we try to trade one for the other, we’re going to lose both.
The way the working class is always controlled is that it’s divided. When you don’t stand together in solidarity, the other side starts picking off groups, and they end up hurting everybody.
Will it work? I don't know, but Ellison is a new perspective. He's not going to be a national candidate for office, but that's not the job of the DNC head. The job of the DNC is to build, rebuild, expand the party from the grassroots up. The current leadership failed. I'm eager to see Ellison given this chance, as he seems to get what the work entails.

Wednesday, November 30, 2016

Kansas: Life for PWDs under Permanent GOP Rule

There's been a lot of talk about the way ongoing disasters in Kansas presage comparable disasters for the United States under un-checked GOP rule. That's certainly my fear when it comes to disability.

Many conservatives talk eloquently about serving people with disabilities (on a language basis PWDs become objectified, it's a charity-based model, but that's a separate post), but it turns out that once you arbitrarily gut your budget, such services become impossible to provide. It's why I think non-partisan disability rights advocacy doesn't work in this specific era of GOP ideology. 

Here's a new NPR piece on the 7-year-wait to get disability services in Kansas, It starts with a disabled adult who had a job, lost it, went on medicaid, and was told he needed to wait 7 years for the services he was due.
Things got tough last year when Nick lost his job and his health insurance. For the first time, he enrolled in Medicaid. He got his basic medical care covered right away, but in Kansas, there's now a long waitlist — a 7-year wait — for people with intellectual disabilities to get the services they need. Decades ago, Fugate might have been institutionalized, but Medicaid now provides services to help people remain independent — including job coaching, help buying groceries, food preparation and transportation.
Nick is eligible for these services, but while he's on the waitlist, he has to pay for them himself, out-of-pocket, at a cost of around $1,000 a month.
Seven years for people to get services they are legally due. But wait, the story gets worse. Kansas responded by privatizing services:
In 2013 Republican Gov. Sam Brownback put KanCare under the management of three private companies that promised to improve services, cut waste and save enough money to end the long waits for the kind of services Nick needs.
Two-and-a-half years later, many families say they've seen few signs of improvement, especially in terms of shortening the waitlist. In fact, it's actually grown by a few hundred names to about 3,500. And, except in emergency situations, the wait to get treatment averages seven years.
Privatizing services is a great way to make a lot of money, but generally a lousy way to provide services. But wait, the story gets worse! 
In August, the department announced it had eliminated a different waiting list — the one for getting physical disability services. That claim has been challenged by advocates, who say many people were dropped from the list without notice.
The U.S. Department of Justice is investigating the waiting lists, although it declined to comment for this story.
The ability of the state of Kansas to act may be limited. Gov. Brownback's tax cuts, which he initiated to boost the economy, have instead blown a hole in the state's budget, leaving little money to apply to something like reducing the length of the KanCare waitlist.
The US DOJ does a lot of important work investigating basic discrimination questions. Of course the new AG is likely to be Jeff Sessions, who is on record opposing inclusive education. His attitude towards disability rights more broadly isn't clear to me, but there is no reason to believe he'll exercise any oversight over cases like this.

So here's my big question: How many people like Nick Fugate and his family are voting GOP, are voting for Brownback and Trump? How many people close to the Fugate family tsk tsk and shake their head and the waitlist and shrug and keep dutifully voting R?

We have to politicize people with disabilities to vote on these issues that affect their lives. 

Tuesday, November 29, 2016

Jeff Sessions is Anti-Inclusive Education

All of the Trump cabinet appointees are likely to be, in my estimation, bad choices. There are few elite Republicans whose position on the function of the federal government I share in any way. That said, there are two clear types of appointees.

1) Those who are eager to use the coercive power of the states.
2) Those who do not believe in the function of the department they would run and who intend to destroy that function.

DeVos (ed), Carson (HUD), Price (HHS) are type two.

Flynn, Clarke, and DOJ nominee Jeff Sessions are type 1. Still, Sessions will also have the power to act in type 2 ways, undermining the oversight role of the DoJ on governmental functions he dislikes.

The Autistic Self Advocacy Network (ASAN) put out a statement about Sessions highlighting his thoughts on inclusive education.
For the past several years, the Department of Justice has actively enforced the Americans with Disabilities Act and the Olmstead decision, resulting in increased community inclusion for disabled people across the country. But Senator Sessions has suggested increasing the segregation of disabled students in public schools, calling the inclusion of students with significant disabilities “the single most irritating problem for teachers throughout America today.” We have grave concerns that under Sessions, the Department of Justice would not protect the rights of disabled people and other marginalized populations.
Olmstead enforcement from the Obama Justice Department has been important (and underreported in terms of federal policies that change lives), but the Bush Administration - and the family of the man who signed the ADA generally - had genuine concern about disability rights and improving the lives of disabled Americans.

UPDATE: Huffington Post reports on Sessions' attacks on IDEA. Blames inclusion on a "decline in civility and discipline" in schoolrooms.

Sessions, it seems, does not.

Stopping him is one of the first fights to come. It's a fight we can win. Call your Senators. Write. Organize.

Monday, November 28, 2016

Who Knows Anything? - Journalism, Caesarean Section, and the Production of Knowledge

The New York Times ran a story about an amazing c-section survival in 1337. But historians of medieval medicine don't think it happened. 

By Monica H. Green

On Wednesday, 23 November 2016—the day before the Thanksgiving holiday in the U.S.—the New York Times ran what it likely assumed to be a “fun fact” story, a minor historical discovery on a slow news day. Under the category, “What in the World” and headlined “A Breakthrough in C-Section History: Beatrice of Bourbon’s Survival in 1337,” the Times piece recounted how Czech researchers had found “an apparent case” of a Caesarean section performed on the recently married, 19-year-old medieval queen of Bohemia.
Pullquote:  In our heightened debates about “Fake News,” we should give more thought to how “knowledge” (“unfake news”) is produced and disseminated.

The piece would likely have quickly become ephemera had it not been picked up by Twitter. There, the case of Beatrice reached the attention of historians specializing in medieval women’s history and medieval medical history. It immediately provoked skepticism.

In our heightened debates about “Fake News,” we should give more thought to how “knowledge” (“unfake news”) is produced and disseminated. In this case, the curtain that needs to be pulled back is the process of peer review.

To the historian of medicine, the study bears all the pitfalls of amateurish oversight. It takes no account of the past thirty years of scholarly literature in either the history of medieval obstetrics (or women’s history more broadly), nor the history of medieval surgery or anesthesia. Peer review by historians of medieval medicine would have quickly identified these problems. It seems, however, that the piece was only refereed by physicians.

What is peer review?

Peer review involves works being sent out, before publication, to other scholars who work on similar questions to the item under review. They assess the piece in terms of its coverage of the existing literature in a field, the originality of its question, and the rigor of its methods. Based on those criteria, publication (or not) is recommended.

But who are “peers”? In the case of medical history, that is a major issue. Are peers physicians who have been trained in modern medicine, who have treated living patients, excised real tumors, autopsied fresh cadavers? Or are they historians who have been trained in the languages, cultures, archives, and traditions of the past? Researchers who have both MDs and PhDs exist, but are rare. The authors of the Czech C-section study self-identify as a physician, a member of the philosophy faculty, and a historian, all at the Charles University in Prague: an impressive interdisciplinary team. The reviewing process should have involved scholars with a similar range of competence.

Pullquote: just as “local knowledge” is needed to interpret the nuances of language and culturally coded behaviors, so local academic knowledge is needed to explain how published work is generated in different professional fields.
The argument of the study hangs on the slimmest thread of evidence, the meaning of the Latin word incolumitate in two versions of a letter sent out under the queen’s name after the birth. Incolumis, according to the Latin dictionary commonly known by its authors’ names, Lewis and Short, means simply “unimpaired, uninjured, in good condition, still alive, safe, sound, entire, whole.” Its medieval usage is comparable. Yet from that single word, and from other accounts written a century or more after the said birth (leaving plenty of time for a private event to have mushroomed into legend), the authors deduce that the queen must have undergone a C-section. Since she clearly survived, the “operation” must have been successful.

There are legitimate grounds to debate the linguistic weight of the word incolumitate, and legitimate grounds to debate the political context in which this still uncrowned queen had to assert her right to the consort’s throne. There are also medical grounds to question the interpretation. Could not incolumitas here mean, for example, that Beatrice, still a teenager, had survived the birth without the crippling damage that obstetric fistula is known to visit upon girls being forced to bear children too young? Unfortunately, neither this scenario, nor many other possible obstetrical outcomes, all of which are well-known from medieval records, are assessed here.

National pride and international spin

The study appeared earlier this year in the national Czech journal of gynecology, meant, apparently, to provide an interesting reflection on national history to the country’s obstetrical specialists.[1] For its original audience, its speculations about the nation’s medieval history were no doubt fascinating. Once its message was amplified internationally by the New York Times, however, it suddenly became “a breakthrough,” a major scientific discovery. Antonin Parizek (“a noted obstetrician and expert on medical history,” according to the Times, and the study’s lead author), seems to be the only person interviewed for the news story. The unsubstantiated interpretation of incolumitate now becomes a fact of history: “Beatrice most likely passed out during delivery,” Parizek is quoted as saying, “and was believed dead … The surgeons opened her only to save and baptize the child. The pain from the operation then likely led to her awakening.”

In short, this is fiction. But, presented as “fact” by the New York Times, it becomes accepted as truth by a world-wide audience. The word “apparent” is the only qualifier given, and other statements—such as the reference to “other archival sources” without clarification that they postdate the birth by anywhere from one to five centuries—mislead the reader.

As noted above, the New York Times piece appears in a section of the newspaper called “What in the World.” This section is meant to circulate news stories coming from other national news outlets, and this one may have been picked up from Czech media. That is certainly a worthy, and indeed, necessary goal in our globalized world. But just as “local knowledge” is needed to interpret the nuances of language and culturally coded behaviors, so local academic knowledge is needed to explain how published work is generated in different professional fields.

The New York Times has given us a prime example of how fake news is generated. In this case, the news is not “fake.” The Czech study really was published. But the implication that it reflected any kind of consensus on what historians believe about women’s medical history was absolutely false.

“What in the world,” indeed.

Monica H. Green is a historian of medicine and global health. A professor of History at Arizona State University, she has published extensively on the history of medieval women’s healthcare, including her award-winning book, Making Women’s Medicine Masculine: The Rise of Male Authority in Pre-Modern Gynaecology (Oxford University Press, 2008). Many of her works, including her comprehensive bibliography on women and medicine in the Middle Ages, can be found on her page.

[1] Thanks to Roberto Labanti for this reference. Thanks as well to Maaike van der Lugt, Katharine Park, and Fernando Dias de Avila Pires for helpful comments.

Sunday, November 27, 2016

Music in Oak Park - Connolly's Irish Pub, 12/3, 8-11

Tomorrow I'll have a gorgeous guest post on medieval c-sections (or not!), the New York Times, peer review, and the production.

Today - commerce and art! I have a band. We play rowdy Irish music. It's not the most sublime form of musical art in the world, but it is the most fun ever (for me! But people in the crowd seem to be having fun too).

On Saturday, December 3, 8-11 pm, we are playing our first show at Connolly's Irish Pub in Oak Park IL. It's a great new pub, lots of you live in the area, so please come out. And if you don't live in the area, please find local art/music to support somehow.

You can RSVP to the gig on Facebook or share the link with friends.

Image Description: A picture of the band with smoke effects in the background,
and details of the gig, already posted above.

Wednesday, November 23, 2016

Do Not Politicize Barron Trump

In late summer, someone I respect told me that rumors were circulating around Barron Trump being autistic, based on his behavior on camera at the RNC. I looked at the rumors, found them believable but not confirmable, and felt it would be unethical to report on them in any way.  Still, I knew that if Trump won, the rumors would eventually go mainstream, find an outlet or a celebrity to promote them, and then I'd need to respond.

 Yesterday, Rosie O'Donnell (whose history speaking on autism isn't good) tweeted the following, the video has half a million views, so:
My simple take is this - Do not politicize Barron Trump. Do not try to out people - anyone in any context - as disabled. Do not be ableist or spread stigma to serve political agendas.

A few more thoughts:
  • You do not know whether Barron Trump is or isn't autistic. 
The video is not especially convincing, just pictures of a ten-year-old boy who is sometimes restless and rarely smiles when on camera in front of millions of people. He could be autistic, because autism is a common natural variation in the human neurotype, but he could also not be. Stop speculating.
  • It is both unethical and cruel to speculate about a child's disability.
In fact, it's best not to speculate about anyone's disability, as such speculations inevitably reveal more about stigma than about the individual. 
  • Barron Trump is not a public figure
Yes, horrible right-wing media outlets politicized both Sasha/Malia and Chelsea Clinton. Those people were horrible. Don't be like them.
There's an assumption that Trump's antivax ideas come from his own experience. He's said:
You take this little beautiful baby, and you pump—I mean, it looks just like it's meant for a horse, not for a child, and we've had so many instances, people that work for me...

Just the other day, 2 years old, 2½ years old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic
Reminder: There is no autism epidemic. We diagnose differently now. Vaccines do not cause autism

[This paragraph was edited for clarity] Really, though, it doesn't matter who Trump was talking about. If his own son or not, the point is that vaccines do not cause autism
  • I am going to fight against antivaxxers in the CDC, in HHS, as the Surgeon General, in the FDA. Barron Trump is not a pawn in that fight.
Someday, I hope we have more openly actually autistic public figures, including presidents and other elected officials. I hope we have children who live in a world where talking about their neurodiversity is no more controversial than describing their hair color. We do not live in that world. 

My experience over the last year has shown me how quickly the Left is willing to go ableist. Let's try to do better on this one.

Tuesday, November 22, 2016

Abuse in Group Homes in Illinois - New Expose from Chicago Tribune

Major story to follow out of Illinois. Investigative reporters Michael J. Berens and Patricia Callahan published an expose of widespread abuse and total lack of oversight in group homes for people with disabilities in Illinois. These homes, known as Community Integrated Living Arrangements, or CILAs, are all over the state, theoretically regulated, but in fact there's very little oversight. 

Here's the first piece in what is to be a very grim series:
In the first comprehensive accounting of mistreatment inside Illinois' taxpayer-funded group homes and their day programs, the Tribune uncovered a system where caregivers often failed to provide basic care while regulators cloaked harm and death with secrecy and silence.

The Tribune identified 1,311 cases of documented harm since July 2011 — hundreds more cases than publicly reported by the Illinois Department of Human Services.
Confronted with those findings, Human Services officials retracted five years of erroneous reports and said the department had launched reforms to ensure accurate reporting.

To circumvent state secrecy, the Tribune filed more than 100 public records requests with government agencies. But state files were so heavily redacted and unreliable that the newspaper had to build its own databases by mining state investigative files, court records, law enforcement cases, industry reports, federal audits, grant awards and Medicaid data.
The Tribune found at least 42 deaths linked to abuse or neglect in group homes or their day programs over the last seven years. Residents fatally choked on improperly prepared food, succumbed to untreated bed sores and languished in pain from undiagnosed ailments.
I'm not going to include any of the descriptions of specific cases of assault, neglect, sexual violence, or other forms of abuse, but they are powerful and worth reading. This is optimal investigative journalism, casting light on harms done to the vulnerable.

Part Two of the series focuses on the failed investigations. I spoke with Michael Berens over the phone, and he tells me that while surely the ongoing budget crisis in Illinois doesn't help, the system goes back well over a decade. Berens came to the Tribune from Seattle, where he wrote a series on the housing of seniors in sort of ad-hoc nursing homes within people's houses. "Seniors for Sale," the prizewinning series, set him up well to investigate CILAs in Illinois. It's the kind of journalism we'd all like to be able to do, so congratulations.

Already today Illinois lawmakers have convened a hearing (and I wish my day job allowed me to go to Springfield to sit in on it, but such is not the life of the freelancer/professor/daddy)

The question is what should happen next. CILAs emerged out of the de-institutionalization movement post-Olmstead. Although surely many hundreds of them provide excellent living environments, they aren't really genuine, organic, community integration. Nor do I believe that one mode of housing is optimal for every single person with a disability, just as I don't believe in one single mode of education or work. Inclusion, as I always say, is not same-ness. Still, I worry that this kind of expose could lead risk-adverse lawmakers and the pro-institutionalization folks (who are powerful in Illinois, embodied by institutions like Misericordia and groups like VoR - formerly Voices of the Retarded, a parent group) to capitalize on the abuse and slow the process towards genuine community.

Over email, I asked Sam Crane of the Autistic Self Advocacy Network about the cases. Crane wrote:
These statistics regarding abuse and neglect in group homes are more or less consistent with the ones concerning nursing homes and other institutional settings. The degree of abuse and neglect in these types of settings is truly frightening. We know that while group homes are often characterized as "community-based" options, many effectively operate as small institutions.

People with disabilities are safest when they maintain close connections with friends and family members in their community, who are in a position to notice signs of abuse or neglect and help to report it. People are also safest when they have the ability to hire and direct their own support staff. This is easiest to accomplish when people with disabilities live in their own homes or with friends or family, using individualized services and supports.

In group home and institutional settings, administrators may not consider the early warning signs that a staff member may be neglectful or abusive - such as mysterious injuries, resident complaints, or residents showing fear or avoidance toward the staff member - to be sufficient reason to replace the staff member. However, when individuals have the opportunity to self-direct their services, they can act on these early warning signs promptly, preventing escalation of abuse.
I've heard similarly from other disability rights advocates, including folks based in Illinois. They aren't shocked at the problems with CILAs. They do want more oversight. They want protection and justice for the victims. But they also want to note that bigger institutions are NOT safer for people with disabilities.

Much more to come on this story as new pieces emerge and the state responds.