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. 

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.

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 Academia.edu 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.

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.

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.

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.

Stop Saying Crusade (Psst: He’s talking to us medievalists too)

Medieval history professor Matthew Gabriele, of Virginia Tech, has published a powerful new article about the word “crusade” in both its modern and medieval contexts. He’s arguing not just that modern people mis-use Crusade, which they do (he digs into the famous W. Bush quote about a ‘Crusade against Evil’), but that medievalists need to stop doing it as well. Gabriele is an expert on nostalgia, in particular, in medieval historical and apocalyptic writing (and of course apocalypse is just history that hasn’t happened yet) and has often written about the ways in which nostalgia for an imagined past inform contemporary political discourse. Here, though, he breaks new ground (to me) by looking at the religious discourse surrounding the Virginia Tech killer’s writing.

What’s interesting about Gabriele’s argument here is the way he focuses on the uselessness of “Crusade” in describing any actual medieval phenomenon, not just the more usual critique (which I’ve often made) about moderns appropriating the word in all kinds of ways. At the end, he concludes:

Is ‘crusade’ useful to us, the namers? I’m beginning to think that it isn’t. It has become a word that carries its baggage invisibly, a multivalent symbol that obscures rather than clarifies, that stands as a cipher for (almost) everything except an actual medieval phenomenon. Perhaps it is time to stop using ‘crusade’ altogether — or, better, ‘archive’ the word. Remember its origins, what it has come to mean, and only deploy it sparingly. Scholars can then focus on the complex, changing relationship between religion and violence across the centuries, free from the baggage the word carries with it, free from the circular logic of arguing the ‘real’ meaning of a symbol.

You can read the whole article here. I’m ready for him to blow up Crusade Studies, much the way as there is no society for Feudalism studies. Instead, medievalists talk about Lordship, or rule, or power, or any number of other things that don’t presume a coherent construct where there was none. Is it time to just talk about sanctified warfare and let the Crusades go?

I doubt that’s going to happen, but appreciate Gabriele’s inquiry.

Who gets to be a public intellectual?

The Chronicle of Higher Education ran a reasonable piece on a group of young, smart, writers associated with high-end literary and political magazines, under the rubric: “The New Public Intellectuals.” I don’t think the causality – these folks went public due to lack of jobs – is at all proven. But writers need hooks, so I am not arguing there. Here’s what I am arguing:

I am routinely struck by how the term “public intellectual,” alas, is used to valorize certain kinds of behavior (writing) and thus demean others (activism) as approvable public activity for scholars. We need to change that, and below you’ll find a long series of tweets on the topic. Community artists, agricultural advisors, activists, and yes, writers like me or the fancy folks below, all are public intellectuals. Any work emerging from one’s scholarly expertise and aimed at an extramural audience is the work of the public intellectual.

And then there’s the flip side, which is using public intellectuals to denigrate specialized intramural or intradiscipline scholarship. This is not a zero sum game. My CNN essays do not mean that my university press monograph is less important. I want us to open our minds – and our tenure/promotion standards – to more kinds of rigorous scholarly activity in more contexts, not substitute one mode of prestige economy for another.

A few key tweets, then the storify.

I am really angry at Moyn. Those of us who don’t work at Harvard need you to promote the idea that scholarship matters for its own sake.

Here’s the entire rant, or just click here to see it on storify.

Keep Talking Culture: Kidlit, Michael Grant, Autism.

Here’s a storify on a recent internet fight around literature, cultural appropriation, and autism. It ended when Michael Grant, a famous YA author, called another author’s autistic child a “burden.” He later apologized.

Everyone wants to understand why Hillary Clinton lost the campaign and what it means for the future. Usually, it means that whatever pre-determined factor you cared about is more important and factors you care less about are less important, because we humans are flawed analysts about nearly everything.

Still, I’ve been troubled to see so many people – mostly white, liberal, men – react to the election of Trump by saying: Can we stop talking about identity now? 
It’s true that Clinton ran an identity-driven campaign. #StrongerTogether says that whoever you are, wherever you come from, whatever specific needs you have, it’s together that we’ll achieve our goals. I thought it was a beautiful slogan and, of course, it won a majority of American voters. It just didn’t win the election, but with only the slightest of shifts – more time in WI and MI? More time hammering Trump on Chinese steel, bankruptcy (I never saw an ad: What kind of business genius loses a billion dollars on a casino and passes the bill to the American taxpayers?), or emphasizing specific good economic plans or any number of other things could have tweaked those 100K voters in the Rust Belt back to Clinton’s way. Just as Republican suburban women went back to the GOP after Comey, Democratic blue collar workers could have been won back.

I’m inclined to give Michael Grant and all the white male journalists eager to cast aside identity as a political force a pass for whatever they did last week, just as I am willing to forget all the ill-considered grieving from people in all my communities, and hope you’ll do the same for me. It was a rough week. If Grant is as bad as he seems, he’ll show it again, and there will be no second chance (not that I’m rushing out to buy his books today or anything).

But for me the future lies not in silencing ourselves on identity, but in linking our struggles. The brilliant scholar Nyasha Junior recently introduced me to this quote from Lilla Watson: “If you have come to help me, you are wasting your time. If you have come because your liberation is bound up with mine, then let us work together.”

Let’s get to work.