#SaveMedicaid: ADAPT Arrested in Colorado

Colorado ADAPT staged a nearly 3-day sit-in in Senator Cory Gardner's office before he had them. Here's the statement from Carrie Ann Lucas on what it's like to be arrested as a wheelchair user with a non-standard wheelchair and a trach. A small quote, but go read Lucas' whole statement and follow them on Twitter @disabilitycubed. 

My control was sitting in my lap the entire time, but because it just looks like a button on a wire, they couldn't figure out that was how I control my chair. Rather than simply disengaging the motors to push the chair, the police and paramedics spent a great deal of time trying to find a joystick on my chair. They kept moving my ventilator tubing around, as if plastic tubing would drive my chair. Because I am trached, moving the tubing moves my trach and causes pain (and causes me to cough), They stopped doing that after I complained. In their search for a nonexistant joystick, they disconnected the display (where I can see what mode the chair is in), which renders the chair inoperable. They also disconnected the switches for my head array, which also prevents anyone from operating any part of my chair. They kept threatening to take me from my chair and take me out of the building by ambulance,and bring my chair at some later date. I resisted all efforts to do that. First, separation from one's chair can be deadly to people with severe disabilities. Chairs get damaged, and sometimes "lost" for long periods of time. They way the officers and paramedics were wanting to transfer me would cause injury, and risk broken bones.

Ultimately, they charged Lucas with trespassing, but also with interference with a police officer because Lucas wouldn't tell them how to operate the chair.

I do not believe one is legally required to tell police how to arrest you without hurting you, but I'll leave that to the lawyers. I'm glad Lucas is safe. In the meantime, ADAPTers are still under arrest and being processed. Remember to donate if you can.

PC Run Amok: Take 98

The American right-wing has a cultural theory, or at least a cudgel: America is being destroyed by political correctness. College professors and liberal students, especially those of color, are to blame. 

It's not a new theory, but in this age of multi-million (billion, for Fox?) dollar media companies and the magnifying effect of social media, it has intensified in its consequences.  On the one hand, Donald Trump ran for president against PC, which is pretty high stakes I guess, but I'm more focused on the academic context. There are well funded conservative anti-academia sites promoting comments, often social media off-the-cuff stuff, sometimes formal writing, and sometimes gross distortions, by professors that will inflame their readers. There are editors at Daily Caller, Fox, Breitbart, trolling those anti-academia sites for a professor-of-the-day to target. And then there are the consumers, who have learned that they can start calling and threatening and being loud, and get professors suspended or fired in some cases. In other cases, they can issue threats and harassment campaigns, and drive academics out of their homes, into spirals of anxiety, and otherwise perform Gamergate-like campaigns on academics (mostly women and PoC).

So here's my question: What are the centrist writers who have spent years criticizing PC run amok going to do about it?

I wrote a bit for Pacific Standard about this problem.

Mostly, when centrist writers acknowledge the threat from the right, the approach is to suggest the left talk less about racism, identity, the need for safety, for the left to make visible their openness to diversity. To argue that when the left says, "safe space," it opens up room for the right to say, "safe space." There's a lot of "both sides are equally bad" talk.

But although attacks on free speech are, in abstract principle, equally bad, on a practical basis, power matters. I'd like to see a shift to the practicalities in terms of how we spend our media power.

I always think back to Melissa Click, the professor at Missouri. She behaved badly to a student journalist. It was bad, and it received massive scolding coverage from across the media landscape.

Then the legislators got her fired. To me, state legislators interfering in hiring/firing decisions in public universities is WAY MORE SERIOUS A THREAT than a single professor behaving badly.

We need to focus whatever command we have of the attention economy on the more serious threats, rather than feed Tucker Carlson his lines with our own "PC run amok" confirmations.

What Happens When You Cut Medicaid? - Texas

New from AP today on the time Texas cut 350 million from Medicaid:

Some Texas children with special needs like Addison have lost critical services since the state implemented $350 million in Medicaid cuts to speech, occupational and physical therapy in December. In Texas, reimbursement offered to providers fell up to 50 percent for certain therapy procedures, said Rachel Hammon, president of Texas Association of Homecare and Hospice. Clinics closed and therapists quit.

The Texas cuts are separate from Republican proposals now before Congress, which academics say could cut federal Medicaid spending as part of a law to replace the Affordable Care Act. But the fallout could eventually be similar if some form of what’s been approved in the U.S. House, and is under consideration in the Senate, becomes law, said Elizabeth Burak, the senior program director of Georgetown University’s McCourt School of Public Policy’s Center for Children and Families

The Texas Legislature voted in 2015 to cut the state’s Medicaid reimbursement for pediatric acute therapy services, which effectively capped how much providers can be paid. Proponents of the cuts argued that Texas’ previous reimbursement rates were too high, sometimes even encouraging fraud.

In related news, my piece on the history of Republican attacks on Medicaid was picked up by the Dallas Morning News. My inbox has been lived.

Block Grants: A History

I have a piece today at The Washington Post about the history of Republicans trying to gut Medicaid, why they failed, and why they might win this time. 

As detailed in a 2013 report by the National Council on Disability (a nonpartisan, federally funded advisory council) on Medicaid block grants and their effect on Americans with disabilities, the first attempt to turn Medicaid into a block grant came in 1981, in Reagan’s first year in office. It made it into a big omnibus budget bill, but was stripped out in a congressional committee. House Speaker Newt Gingrich (R-Ga.) actually got block grants passed in 1995 as part of his “Medigrant” proposal, but President Bill Clinton vetoed it (with strong backing from health policy experts), and it was dropped from the subsequent compromise bill. President George W. Bush and the Republican congresses of 2003 and 2005 could have passed block grants at any time, but sustained resistance from advocacy groups, Democratic leaders such as Rep. Henry A. Waxman (Calif.) and Edward M. Kennedy (Mass.) and the legislative distractions of forming Medicare’s prescription drug benefit kept the bill from advancing.

 Moreover, at the time, many Republicans wanted to find bipartisan solutions whenever possible. Henry Claypool, who has been working on Medicaid policy in and out of government since the 1990s, told me that the Deficit Reduction Act of 2005 did include some Republican changes to eligibility, but also expanded support for home- and community-based services in ways that have helped many disabled Americans.

Today, everything has changed. House Speaker Paul D. Ryan (R-Wis.) has been proposing block grants since 2010, but he had no chance to get them enacted under President Barack Obama. Now, he and McConnell have co-opted the legislation intended to fulfill GOP promises to “repeal Obamacare” (which would be bad enough) as a way to sneak through decades-long assaults on the basic American promise of Medicaid.

This time, the phrasing is “per capita caps.”

Juice and Stereotypes

Zuma Juice made the worst piece of disability stereotyping commercial I've ever seen. The disability community let them know what was going on, and I wrote it up for Pacific Standard.

This ad trades on two of the most pervasive stereotypes facing disabled folks. First, that their disability is attributable to poor lifestyle choices—i.e. drinking soda and eating junk food. Second, that lots of them are faking and are just lazy. The choices in this ad reflect deeply held stigmas about bodies, health, and disability. As we've reported at Pacific Standard, people working to cut disability benefits tend to blame disabled people for their disabilities, while simultaneously accusing many people receiving those benefits of having perpetrated fraud. Moreover, the belief that lots of people are just pretending to be disabled leads to public accusations and humiliation, even violence.

See more on the ad here.

Police Violence, Race, and Stigma in Chicago

I was recently on a boat with a friend who said - I never read Twitter or Facebook any more, but I do check your blog for new stuff. So when I publish new pieces, I'm posting little excerpts here. Hi Melissa! :)

How do you find my stories? What's the role of the blog for you today? Let me know ... maybe on Twitter.

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My first feature for The Guardian is on the intersections of racism, poverty, and trauma in Chicago, and the black disabled leaders working to make a better city. They are fighting police violence, working to educate their communities on disability, and it was an honor to talk to them and write this:

Chris lives in Ogden Park in Englewood, a neighborhood on the South Side of Chicago, where I drove to meet him. As the hot afternoon waned, we spent an hour in the shade of the sycamore trees, sitting on a slanted wooden bench, talking.

He was restless. He sat. He stood up. He paced and smoked. Piece by piece, Chris revealed his theories about disability, race, poverty, policing and the vicious cycle in which Chicago’s disabled black residents have found themselves.

Chris Huff is a member of Advance Youth Leadership Power(AYLP), an advocacy group organized through Access Living, one of Chicago’s leading disability rights organizations. They have taken on a complicated twofold mission.

First, they are trying to teach those concerned about police conduct, including the US justice department (DoJ) taskforce, to see the disability component in the broader narrative of an abusive Chicago police department – especially as a third to half of people killed by police have a disability. Second, and perhaps even more critically, these activists are hoping to help their own communities perceive the links between disability and racial and economic justice.

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Privacy Laws: Substitutes and IEPs

In my recent piece on criminalization of autistic children, I wrote: 

The prosecutor's office told me they could not discuss the case because Ashton was a minor. The school district told me they could not discuss any individuals because of federal privacy law (namely the Family Educational Rights and Privacy Act, or FERPA), and did not respond to a follow-up email asking to discuss the conditions in the district for children with IEPs and 504 plans more generally. The Student Press Law Center notes that privacy laws are often used to protect institutions from having to comment to the press, rather than protecting individuals, and that seems to be the case here.

I'm going to be following up on this. One issue that emerged in the interviews and the comments related to whether substitutes can see IEPs/504s. Schools frequently defend their poor responses to behaviors by saying subs didn't know ... but they must know.

Your school administrators may incorrectly believe the IEP is confidential.
If so, the administrator thinks he cannot release it to teachers and other staff members. This is not true.Schools can release confidential information about your child to anyone at school who has a genuine need for that information.
From the Federal Special Education Regulations –

34 CFR 300.323 (d) Accessibility of child’s IEP to teachers and others.  Each public agency must ensure that-
(1) The child’s IEP is accessible to each regular education teacher, special education teacher, related services providers, and any other service provider who is responsible for its implementation; and
(2) Each teacher and provider described in paragraph (d)(1) of this section is informed of-
(i) His or her specific responsibilities related to implementing the child’s IEP; and
(ii) The specific accommodations, modifications, and supports that must be provided for the child in accordance with the IEP.

We need to reclaim privacy laws and use them to protect individuals, not institutions.

Disability Myths in Higher Ed

Too many college professors treat requests for reasonable accommodations as either students trying to get away with something (extra time, for example, on assignments) or signs of poor moral character (toughen up!). I would like such statements treated with the same care as casual racism, classism, sexism, and other forms of bigotry. Which isn't to say we always handle those well.

Three professors have written a terrific essay for The Chronicle on attacking these "disability myths."

We live in a time where the discourse of diversity is practically a bumper sticker found in faculty orientation packets. Yet the presence of disabled students in our classrooms is too often presented as an anomalous burden, a challenge to be met. Its overarching goal? To normalize disabilities by setting them up as simple problems to be easily overcome.

We saw a good example of that in a recent advice essay in The Chronicle — "Why I Dread the Accommodations Talk," by Gail A Hornstein. While her efforts as an ally of disability rights are certainly appreciated, her rhetoric — labeling disability conversations with students as something to dread — is dangerous, not just for the students it minimizes, but for the "advice" it offers to faculty members.

Disability activists and theorists such as Simi Linton and Margaret Price have been working for years to combat and dispel calcified and problematic tropes about disability. Unfortunately, Hornstein’s essay served to perpetuate them: the myth of overcoming disability (or what Hornstein labels "resiliency"), the trope of the able-savior, and the notion that disability itself is inherently deficient and, thus, runs contrary to academic life. We’d like to explore each of those in turn and then share some of our own suggestions for handling "the accommodations talk."

As always, READ THE WHOLE THING.

Seanan McGuire - INTERVIEW

I have a new interview up with Seanan McGuire, the awesome speculative fiction author. We talked about her new portal fantasy, Down Among the Sticks and Bones, her genre-queering approach to writing, and, of course, My Little Pony.

---------------

When you were a kid, what did you read, and what did you feel was missing in the fantasy that you consumed?

I grew up on welfare, which I bring up a lot because it's really relevant to what I used to read. Growing up super poor, you read what your mom brings home because you can't get anything else. My mother would come home from flea markets and yard sales with these gigantic boxes of whatever people were getting rid of. She was bringing books with unicorns and space ships on them for her nine-year-old, so I was getting science fiction that was 20 years out of date and I grew up on that.

There were virtually no women [in those books]. What I noticed was that only boys got to have adventures and go out and fight dragons or befriend dragons. Then a woman would show up and she would, 90 percent of the time, be a sexual reward for the guys for going out and having these adventures that were never offered to her in the first place. I didn't want to sit at home and then have sex with the hero when he came back from going on this grand quest.

Segregated Proms are Segregated

A segregated DC school throws a segregated prom and applauds itself for its segregation. Everyone in this story has nothing but good intent. They are working hard for their students. But this is the wrong attitude.

“If we had these students in a conventional school, they’d probably sit in a corner and not engage, or they’d be made fun of,” says Aimeé Cepeda, principal at River Terrace. “Here, they get to celebrate with their peers.”

That's a justification for intensifying segregation, as David Rosenblatt said:

This is a RESULT of segregation & stigma, not a justification for more segregation.

— David Rosenblatt (@DaveMRosenblatt) June 13, 2017

Disability segregation does sometimes happen in our educational system (and housing, workforce, etc.). We should always be working to turn it back towards inclusiveness, not celebrating our segregation.

Pacific Standard: Why American Keeps Criminalizing Disabled Children of Color

I have a longform piece for Pacific Standard today. I've been working on it for about 6 weeks. Please read and share throughout your networks, if you are so inclined. TWs for abuse of children by authorities.

"Why would a school cop in Florida throw a slender, autistic fourth-grade student to the ground? You might assume that the child must have presented some kind of serious threat to himself or others, that other skilled experts had already tried de-escalating interventions, and that there was no other choice. Such was not the case for 10-year-old Seraph Jones. This spring, a school cop threw him down and held him against the ground with sufficient force to cause rug burn.

It turns out that Seraph's worst day at school—so far—happened because he was clicking a key too loudly, then ended up trapped in a situation where he had no good way to safely calm down."

Saint Wars and Russian Cinema

My scholarly work centers around a simple premise: When you make a saint, you gotta tell a story. The same holds true for when you move a saint, create relics, place relics in new locations, develop new festivals. These sacred acts can have enormous cultural and political consequences, but only if you tell the right story.

In Russia, pro-authoritarians have been resurrecting (pun intended) the notion that Tsar Nicholas II was a saint and martyr due to his execution by the Communists. That's one story. Now a major Russian motion picture shows him in love with a ballet dancer (which is true), and one not appropriately beautiful or Russian-looking enough for the authoritarians. Controversy follows.

New York Times reporter Neil MacFarquhar has a fabulous feature on the controversy. Here's an excerpt.

That has done little to douse the hostility from the Russian Orthodox Church and its adherents. Some want the movie banned, while the most extreme have threatened to torch movie theaters that show it.
The main objection from the church is that because Czar Nicholas II and his wife were canonized in 2000, the movie is an insult to the faithful, which is a crime in Russia.
“This film represents, in my opinion, the apotheosis of vulgarity,” Bishop Hilarion, the head of the church’s external relations department, said on television, noting that the director had invited him to view a rough cut. The bishop conceded that there had been some manner of love affair, although he dismissed it as a youthful infatuation.

And

Even as Mr. Uchitel acknowledged that the movie contained elements of fantasy, he questioned the historical interpretation used by his religious critics. Nicholas II became a sainted martyr because of the way he and his family died — in a hail of bullets fired by a Bolshevik firing squad — not because of the way he lived.
“Their main concern is that since he was shot with his whole family, and thus became a saint, he could not have had any affairs,” Mr. Uchitel said. “On the contrary, it is totally correct to show him in this human way.”

Making saints requires stories. As always, READ THE WHOLE THING.

Comey and the Meddlesome Priest

Former FBI Director James Comey and Senator Angus King (I-ME) both referenced the murder of Thomas Becket by the oblique order of King Henry II. Comey is before the Senate Intelligence Committee testifying about President Trump, Russia, spying, and possible obstruction of justice.

Here's a clip with video.

Transcript:

King: When a president of the US in the oval office says something like I hope or I suggest or would you, do you take that as a directive?
Comey: Yes, yes, it rings in my ears as "will no one rid me of this meddlesome priest?"
King: I was just gonna quote that in 1170, December 29, Henry II said "who will rid me of this meddlesome priest" and the next day he was killed, Thomas a Becket, and it's exactly the same situation. We're thinking along the same lines.

Medieval history is always with us. I had a similar thought in early March.

Called it. March 4. #ThomasBeckettTwitter is the Best Twitter. #ComeyHearings https://t.co/OA2Uj7zxVJ

— David M. Perry (@Lollardfish) June 8, 2017

Zuma Juice: Drink Our Product or Be Fat and Disabled

This ad from @zumajuice features a wheelchair user with cheese poofs and a big soda as "lazy," in contrast to the slender juicing women. pic.twitter.com/KzqNPvPM7w

— David M. Perry (@Lollardfish) June 6, 2017

I'm on vacation this week, but felt the need to post about this:

I was alerted by a twitter friend to an ad from a juicing company that shows two slender women making some kind of juice. The woman on the left is using a blender and, ew! On the right, slender woman number two uses this Zuma thing to make juice more easily!

And then a woman in a wheelchair, not slender, with a huge vat of cheese puffs and a giant mug of soda, rolls up. They begin fighting over the Zuma juice. The ad sets the fat disabled junk food eater against the thin Zuma-drinking women. It's meant to be comic. It's wholly unacceptable.

UPDATE: Here's the story, as I now understand it: Zuma Juice, by their own statements, wanted to compare the health conscious people who juice with a caricature of a health unconscious lazy slob - so they gave her junk food, soda, a big vat of cheese puffs, and a power wheelchair. In their "apologies," they indicate that they would have used a hover board if they had them, but that since many power wheelchair users don't even need them (just being lazy, in their minds).

The idea that disabled people are lazy and self-damaging is widely prevalent, linked to all kinds of stigma, from social shaming, police violence, and attacks on Social Security.

Zuma Juice rarely tweets.  You can contact them here.

Update with tweets (thanks to Karrie Higgins for pointing these out): More context with screenshots from various interactions with them.

RT if you'll NEVER buy health products that shame people with disabilities as @zumajuice did in their commercial mocking a wheelchair user. pic.twitter.com/V3KAAzTajh

— April Resists (@AprilDelRario) June 6, 2017

@Sophieneechan here are the screenshots to their "apology" pic.twitter.com/fe47QoYprM

— Megan ⛧⚢♿🔮🕯 (@Skrambled_Megs) June 6, 2017

Images captioned here.

Screenshots of Zuma Juice's "apology". https://t.co/Jo4PR4BCwJ

— Sofie H. Solbakken (@Sophieneechan) June 6, 2017

Gig Economy and Disability - AirBnB

A few weeks ago I wrote for Newsweek about Uber and its poor record on providing transportation for disabled folks.

In the gig economy, profits pour in based on dodging the requirements of the regulatory state that enforce equal accessibility, pay, lack of discrimination, and basic economic justice. When vulnerable populations complain, they are brushed off with token responses and denial of legal culpability. 

Here's another example:

Ms. Garcia, who is from El Paso, was planning a May trip with her family to the Chicago area and wanted to know if the places she was considering could accommodate her needs as someone with muscular dystrophy. Unfortunately, she said, her questions appeared to scare off at least two potential hosts.

She said she feels that if she had not mentioned her disability, “they would have rented to me, no issue.”

Ms. Garcia is not alone in feeling that way. Other users have reported similar bias, and a new Rutgers University study — based on more than 3,800 Airbnb lodging requests sent by the researchers — suggests it may be common: Travelers with disabilities are more likely to be rejected and less likely to receive preapproval, or temporary clearance, for a potential stay, the authors found.

Hosts granted preapproval to 75 percent of travelers who made no mention of a disability, according to the study. That rate fell to 61 percent for those who said they had dwarfism, 50 percent for those with blindness, 43 percent for those with cerebral palsy and just 25 percent for those with spinal cord injuries.

1) Schur, the author of the Rutgers study, does great work.
2) This is the same phenomenon as with Uber. Dodging the regulatory state leads to discrimination.

Minnesota vs Illinois Spending on Developmental Disability

This morning, for no particular reason other than I'm moving to Minnesota in 8 weeks, I've been playing around with the "state of the states" chart creator for spending on Intellectual and Developmental Disability. I've loved my time in Chicagoland. It's packed with amazing advocates and leaders, but they are fighting against some pretty serious structural headwinds when it comes to disability rights and services. 

Here's some data:

Chart showing MN spends $6.95 per $1000 of personal income, IL spends $2.72

Other stats:

MN places 98% of its community funding in 6 or fewer person homes. Illinois, just 58.1

93% of all MN placements are in 6 of fewer person community living options. 48.2% for Illinois.

United Cerebral Palsy does an annual (I think) report on the best states for inclusion. The latest has a lot of details which I'll explore later. I actually don't think all their metrics are optimal (Arizona is ranked #1, and I'm skeptical for various reasons). But they do provide some useful overviews. For example, MN is ranked 12, the ranking low only because of a waiting list. It needs to grow by 20% to meet need.

Illinois is ranked 47. The entry reads:

Illinois has 7 large state facilities housing 1761 Americans at a cost of $155855 per person per year.
Illinois participates in the National Core Indicators, the premier quality assurance program, and reported their 2015 NCI survey data.
Illinois has a waiting list that would require the program to grow by 101% on average to accommodate the need

Minnesota will surely have its own problems for me to rage against. I'm sad to leave my allies and friends and colleagues and students behind. But I do like these numbers.