Friday, April 29, 2016

Breaking Bad and Disability Narratives

I tried to watch Breaking Bad years ago with the rest of you, but as the story quickly unfolded around questions of disability and cancer, I had to stop, for personal family reasons.

Now, the show long over and the spoilers nicely spoiled, I'm trying again (on the treadmill). Disability informs so much of the show in complex, and somewhat troubling ways.

Here's a critique by disability studies scholar Stephen Kuusisito [my emphasis]
It’s hard to like cancer. But aside from the whack-a-mole portentousness of Walter’s diagnosis, the narrative incitement of “Breaking Bad” has everything to do with dark agency: accordingly the show depends on unabashed ableism. By this I don’t mean simple “discrimination in favor of able bodied people” but what David Mitchell and Sharon Snyder call “narrative prosthesis”–disability as a vehicle employed to reinforce normalcy. Narrative prosthesis deflects the abnormal body by dramatizing its unseemliness and presuming its incompatibility with our better natures. This is “Breaking Bad” in a nutshell.

What makes narrative prosthesis palatable? The answer (as Dickens well knew) is the Tiny Tim effect–the cripple must stand for something larger or more urgent “right now” in culture. You might not ordinarily think of Walter White and Tiny Tim in the same room, and if you were inclined to think of Tiny Tim at all in the context of “Breaking Bad” you would most likely imagine Walter’s son Walter Junior who is portrayed as having mild cerebral palsy. This is a clever prosthetic red herring, a ruse on crutches, for Walter is Tiny Tim in the purest sense: he reflects cultural ideas about illness. Why? Because his diagnosis is inseparable from his latent capacity for dishonesty and cruelty–a matter the show labors to prove throughout its first season as we see him despise friends and former business partners and family members who wish to help him. He’s Ahab with cancer and no health plan and a chemistry degree. He’s a figure for our times: smart, ironic, bitter, a little crazy, shrewd, vengeful, oddly nostalgic for his nuclear family, entirely creepy. But while the show strives to make these qualities digestible its larger Aristotelian template is a simple reduction of ableist ideas about serious illness. Everyone will be made ill by Walter. Everyone is rendered a cripple by Walter from his brother in law the DEA agent to his wife to Jessie Pinkman. And this is the oldest and most repulsive idea about cancer of them all. Cancer as metaphor. Intoxicating. Everyone alive with vices. Even the environment has cancer. The houses. When ableism really works its best magic the city is cancer. As Sontag says: “Before the city was understood as, literally, a cancer causing (carcinogenic) environment, the city was seen as itself a cancer–a place of abnormal, unnatural growth, and extravagant, devouring, armored passions.”
So, that's a pretty harsh indictment.

I've only seen the first few episodes, so have no real comment yet, other than finding the performative masculinity linked with ableist dialogue interesting (and pretty sure it was an intentional move on the part of the writers).

What else should I read about it?

Thursday, April 28, 2016

Accessible Conferences - A good set of guidelines

Nice post here on Accessible Conferences. Highlights:
Incorporating accessibility into conference organizing must begin at the earliest stages of conference planning, not least of all to ensure that accessibility is a central item in funding applications. Thus, you will notice that even our CFP for the conference provided a sketch of the accessibility provisions for the conference.
Note that there are guidelines for both presenters and for moderators. If there are any concerns that arise during conference events, please let the moderator know. Moderators will be asked to help facilitate accessibility during sessions. You may ask the moderator for assistance before, during, or after your talk. If needed they will be in touch with Jane Dryden (local conference organizer) or a designated student volunteer.
It's everyone's work to be accessible as possible. I now routinely describe my powerpoint slides with sufficient detail that a person with vision issues will have a sense of what I'm talking about. I use a microphone even if I feel I can project. And I try to say that explicitly to tell the audience this is what I'm doing and why, as a way to help spread the culture of accessibility.

For the guidelines themselves, which are solid, please click through to the original link!

Wednesday, April 27, 2016

Ads and Disability - Kleenex pairs Disabled People with Cute Dogs

Here's a long analysis of disability in "ad-land," from New Mobility, focusing heavily on visible disabilities (and especially people in wheelchairs). The author is more optimistic than I am and more dismissive of inspiration porn as a problem (there's a lot of - sure, sentimental, but it's great - analysis), but has both some good points and useful numbers. Some excerpts:
Perhaps the country’s leading authority on this matter, at least in terms of quantitative analysis, is Olan Farnall, Ph.D., a communication and media scholar at Texas Tech University. In 2012, Farnall conducted an exhaustive survey of what he called “ability-integrated” TV advertising (AIA) and compared it to a similar study done in 2001. In a sampling of over 1,600 commercials, Farnall found that 29 made the grade. Doesn’t sound like much, does it? In 2001, the number was 15, i.e., half as many. Extrapolated from his sampling, there are far more ads out there than 1,600 and far more AIA ads than 29. Today is a huge ad universe. Counting in multiple repeats, there may be as many as 1,500 30-second spots airing a day!

Farnall estimates that the frequency of ability-integrated ads is about 1.7 percent. By comparison, in the last study published, the frequency of actors with disabilities in speaking parts in a given television programming season was .5 percent. Get out your calculator — that’s more than three times greater.
It has been four years since Farnall canvassed the TV commercial landscape, so the uptick from then to now is largely anecdotal. 
Here's a point I like:
Cool people in wheelchairs are decidedly new content, right along with heavily tattooed dads and mixed race couples. Seeing a wheelchair user dancing is something Millennials have seen over and over again at Coachella or Bonnaroo. In their minds, ads like this are simply catching up with their everyday reality.
 Ads, like other media, could use much more sophisticated analysis when it comes to disability and representation. I have good news on that front coming soon in regards to Hollywood and TV, but there's lots of work to do here.

And then we come to Kleenex. From New Mobility again:
Adman Loebner points to another spot that might draw the same reaction. Made for Kimberly-Clark, aka, Kleenex, it is called “Unlikely Best Friends” and features a paralyzed dog and a paralyzed man and their man-dog camaraderie. “Chance,” the dog, hit by a car and close to euthanasia, is an ever-present reminder that, back legs or no back legs, life is good. Kleenex is never mentioned until the final graphic.
Watch the ad here (it is captioned):

The author likes it, saying maybe it's good inspiration porn, but I wonder - what is the function of this ad? Is it to say - all lives, even disabled lives, have value? It certainly doesn't have anything to do with selling Kleenex, unless such narratives make you cry.

Here's another one from Kleenex, this one involving a dog and a girl with Down syndrome (and her mother).

Barney, the companion dog, "doesn't see disability. He just sees her."

Again - this is basic feel-good cute animal plus disabled person storytelling. It doesn't sell Kleenex. It's about the feels.

It's not terrible, as these things go. At least it is centering the disabled person more or less, and it's totally cute. And yet, the message I come away with from both of these Kleenex spots is - awwww, doggie.

As always, when thinking about disability and ads, I return to the gold standard: Swiffer and the Rukavinas.

Interracial, inter-abled, actually on the product, makes you feel good, doesn't inspire pity or sympathy or othering.

Monday, April 25, 2016

Lydia Brown on Internalizing Ableism and "The Movement"

Lydia Brown has a great new essay on internalizing ableism. We all consume the oppressive mental structures of our society - racism, ableism, classism, sexism, etc. - and replicate them within our discourse, actions, and thoughts from time to time. It's part of why I think apology and restoration of community is so important and tricky. Societal norms will push us to fail sometimes. The trick is how to distinguish abusers versus those who act through ignorance or mistake. But that's a subject for another post.

As always, Brown's insights into disability are extremely important. I was struck, though, especially by this paragraph:
We build cultures of perfection in activist spaces. This is not unique to autistic or disabled spaces. Purity politics pervade activist and social justice spaces. Call-out culture demands that in the rush to create safe spaces, we shut people out and throw them away if they fuck up once. (This is not about forgiving privileged people for repeatedly entitled or outright abusive behavior targeting marginalized people. This is about disposability politics.) We're constantly competing for limited resources ("likes" and "reblogs" and "retweets," all the twenty-first century trappings of social capital -- and that word "capital" is critically important), trying to be better activists, always on, always saying the right thing. We give pithy acknowledgements of privilege and past ignorance/fuck-ups, but functionally act as though in the present time, we no longer fuck up because now we're Educated. That it is our duty to jump down each other's throats at the slightest mistake or misphrasing -- ignoring the completely classist, racist, and ableist implications of expecting people to always say the right thing and never accidentally say the wrong thing or not know the correct terms.
I think the internet - which is to say typed space that feels ephemeral like oral speech, but is in fact semi-permanent (esp with screenshots, wayback machines, etc.) - exacerbates these tendencies in activist spaces. It's easier for the casual way internalized oppressions emerge in discourse to travel beyond the confines of the off-hand, revealing, utterance.

Brown then asks:
So where are our spaces where we can heal not just from the trauma inflicted on us by others but also from the ongoing trauma we inflict on ourselves? Where can we be vulnerable, truly vulnerable, without fearing the consequences of enforced ostracism from "safe spaces" that privilege an ableist facade of having-it-together and overcoming-internalized-oppression?
Building those spaces is part of the work that Brown is doing.

Friday, April 22, 2016

Two Deaths and the Cult of Compliance

Two deaths of disabled men at the hands of law enforcement have been in the news lately.

One was black, a veteran, and a mental health crisis spun him into custody, where an officer (allegedly) broke his neck. The other was white, nonverbal, autistic, and walked away from his group at a park, where an officer (allegedly) slammed him to the ground and caused his death.

Here are the stories.

Elliot Williams died in 2011, but a new lawsuit and released surveillance video have made it news.
Elliott Williams spent the last five days of his life in a Tulsa County jail, paralyzed and lying on the cold concrete floor. But despite the 37-year-old Oklahoma man’s pleas for help, guards did nothing to save him, a lawsuit claims.

At one point, jailers dumped Williams’s limp body into a shower and left him there for an hour. The dying inmate “would not stand up but we did give him a shower anyway,” a captain later testified, according to a sheriff’s office internal report.

Another officer saw Williams face down in the shower, screaming, “Help me!” according to the internal report.

“He’s acting like he’s paralyzed, but we know he’s not,” a mental health worker told Williams’s dad, court papers allege.

Detention officers, nurses, and even a jail psychiatrist accused Williams of “faking” an illness. His family says they declined to administer medical care or transport Williams to a hospital—until it was too late.
Williams died in a pool of his own saliva and vomit. Notice that although he had psychiatric disabilities, what killed him was an officer deciding that a threatening step required slamming him to the ground, during which he suffered the neck injury.

Meanwhile, just Wednesday, Paul Gianelos walked away from his group at a park, so his caregivers called the police to help find him. For reasons that aren't clear, when Gianelos wouldn't quickly comply with orders to get in the car, the officers - at least one of whom had Crisis Intervention Team training - decided to escalate the situation (instead of, for example, calling for help from the professionals who cared for Gianelos). From WUSA9 in DC:
Fairfax police say a 20-year veteran officer with crisis intervention training, spotted
Gianelos along Annandale Road, about a mile from the park. Police say the officer tried to talk him into coming back to the group home outing. Gianelos apparently refused, and police say he became combative and began to struggle with the officer. Gianelos was handcuffed, and fell, hitting his head. Rescue crews were called and police say when Gianelos was being transported, he went into cardiac arrest and died.
We don't have more details yet, but I've read a lot of these reports, and I suspect we'll find out that the officer simply decided that compliance, rather than patience, was mandatory.

For new readers, here's some information on the cult of compliance and law enforcement.

 And many more. 

Thursday, April 21, 2016

The Revictimization of a Transgender, Disabled, Immigrant: Oppressions Intersect

Content Note: Rape, Abuse, Violence

Intersectionality is often used in very positive ways - to affirm multiple identities, to demand voice for the multiply marginalized, and so forth. This is valid and vital, but I read the source material (Crenshaw's work) as saying something less pleasant. To me, the core message of intersectionality is that oppressive forces intersect, endangering people whose identity incorporates multiply marginalized categories.

Today, Tina Vasquez (writing for Rewire) has a piece on a disabled, trans, immigrant and the many ways her rights have been disregarded. As always, please read the whole piece.

The story discusses M, who has mental health issues, cognitive disabilities, and a seizure disorder. She is the survivor of trauma. She is transgender. She is, of course, an immigrant. She is (I assume) not white.

She's done everything right, but the system has failed her. Some quotes:
While there, Ramos said M was subjected to verbal abuse from officers who mocked her transgender identity, with one officer passing her cell and saying, “What’s the story with this one,” according to M’s attorney. Eventually, M was transferred to Immigration and Customs Enforcement (ICE) custody at San Diego’s Otay Mesa Detention Center, where M says the trauma continued, explained Ramos.
M was held in a cell with men for 12 hours as she was processed into Otay Mesa, with one detainee staring at her aggressively for the entire 12 hours, according to her attorney. After processing, M was placed in medical isolation for reasons Ramos said she could not share out of respect for M’s privacy. Later, M was brought into the shower area with men. Though she was given her own private stall, male detainees showered nearby, Ramos said.
“She began experiencing flashbacks and felt like she was going to be raped again,” Ramos said. “She felt helpless because the officers were not taking her concerns seriously. It was incredibly traumatizing.”
Ebadolahi told Rewire current U.S. immigration policies only subject traumatized, vulnerable asylum seekers to more trauma—and M is one of the more “fortunate” ones. After successfully passing her credible fear interview, M was released from detention on April 11.
“We’re talking about a transgender woman who is a survivor of multiple rapes, who has post-traumatic stress disorder, who has disabilities, including a seizure disorder, who has gone through a lifetime of hurt, and for who the simple act of appearing at the port of entry and applying for asylum took an enormous effort—and despite all of these things, she is considered one of the fortunate ones because she has a pro-bono lawyer working on her behalf,” Ebadolahi said.
“How M and her attorney were treated at the port of entry and … in detention, is unconstitutional, unethical, and outrageous. We shouldn’t tolerate it. This treatment serves absolutely no legitimate, government purpose and only serves to further traumatize and marginalize very vulnerable people. No one should be subject to this kind of abuse. This has to stop.”
Our system to protect asylum seekers only magnifies trauma. We need to do better.

Wednesday, April 20, 2016

WBEZ: Trading parental rights for mental health care

In our system, parents have to abandon their disabled children (officially anyway) in order to make the state into a child's legal guardian, and thus the state will provide actual health care.

From WBEZ:
One of the worst moments in Eileen’s life was the day she called a local Chicago hospital to tell them she refused to pick up her 15-year-old son after he was discharged. He was in the hospital for psychiatric care, one of many visits over his young life.
It’s hard to imagine why someone who loved being a mom would decide to refuse to pick up a child who had been discharged from a hospital. But it was a painfully logical choice.
Across the country, and especially in Illinois, it can be incredibly difficult to get psychiatric services for a child, let alone pay for them. So when a parent has a child that needs psychiatric help, that parent sometimes make an excruciating choice to give up custody.
The reason these parents abandon their children is because once the state becomes the child’s legal custodian, the state is forced to provide the mental health care the parent couldn’t access. According to the most recent data available, about every four days in Illinois, a parent gives up parental custody to get critical mental health services for their child.
It makes terrible sense. I've written about the ways our system is so focused on crisis response rather than crisis prevention, so people can get into emergency rooms (maybe, sometimes, if not shot), but not long-term preventative psychiatric care. See here on Phillip Coleman and here on Paul Ryan for my work on that.

Captain America: Humanities Major

From The Mary Sue, Alysa Auriemma has a lovely essay about Captain America (in the context of the comic "Civil War") and a new masculinity. After opening paragraphs on toxic masculinity and patriarchy, she writes:
Captain America not only navigates masculinity, but he completely subverts and ultimately rejects our contemporary conceptions of what it means to be a man, thereby creating a new kind of masculinity that demands self-inquiry, emotional empathy, and innate goodness. It’s not enough to just say Cap is an example of non-toxic masculinity, because what Cap does is redefine the binary of maleness. He’s not just an emblem for what not to be; he’s a roadmap of masculine possibility. 
It's a good essay and you should read it. But here's my favorite part [My emphasis]:
Steve, The Art Student
Many of the male, human Avengers specialize in math and sciences: Tony Stark is a brilliant electric engineer, and Bruce Banner holds a doctorate in nuclear physics. But prior to getting transformed into Captain America, Steve Rogers was an art student who was really into comics and illustration and was planning on getting fine arts degree. This focus on the humanities correlates to Steve already subverting our expectations. We think of Captain America as this beefcake who represents the best of us. Perhaps the “best of us” doesn’t have to always focus on STEM (although the push for more women and girls to get involved and recognized for their work in math and science disciplines is welcome), but on the ways in which we can discuss, theorize, and imagine the world, as well, through arts education. This major literally illustrates Steve’s optimism and hope and points out a reason why Steve would volunteer for Operation Rebirth in the first place. He sees the world how it could be, which leads him to ultimately transform into Captain America.
That's right. Steve Rogers, whose path to heroism came from being good, is a humanities major.

Also he's my son's favorite (Image Descriptions: Three pictures of my son in various poses, wearing a Captain America shirt and Captain America swimsuit).


Tuesday, April 19, 2016

Upcoming Webinar: Disability and Journalism - Telling Better Stories

I'm very excited to announced that I will be joining with Lawrence Carter-Long to offer a free webinar on disability and journalism on May 11, via The Poynter Institute. 
There are 56 million Americans who identify as disabled. Tens of millions more are connected to disability as direct caregivers or family members. Yet journalism about disability is too often stuck in decades-old models that imagine disability only as tragedy, a personal medical problem or something to be overcome. Thankfully, the historical divide between newsrooms and disability activist communities is rapidly becoming an a thing of the past.
In this webinar, we’ll offer better ways to tell stories about disability as identity, reveal key resources for reporting on these stories and see the disability angle hidden within almost every beat.
  • How to avoid common mistakes that dehumanize disabled individuals
  • Where and how to find untold stories about disability in America
  • The benefits of understanding disability as identity rather than as a collection of medical concerns
  • How to connect disability to other stories in other communities in order to practice intersectional journalism

Every major beat has a disability angle, likely one you haven’t explored. Politics, metro, sports, health, entertainment, even weather (we could tell you stories about snowstorms, Hurricane Katrina and wheelchair-accessible trailers) — reporters who work in any of these fields, and the editors who oversee newsrooms, will find a wealth of new stories at their fingertips once they begin to engage with disability.
Please spread the word. Share the link. We'll be reaching out to people across the disability community to learn more about what YOU want to see journalists do better, but please leave comments, end me emails, tweets, Facebook messages, anything.

I'd especially like to encourage you to think about local journalists. Too often we focus on the big nationals - and that matters, as their patterns shape local practice. But while I follow the nationals carefully, I don't know what's being said or reported on in your particular community. Send links! Send commentary! Send anything.


Sunday, April 17, 2016

The Down Syndrome Memo

Here's the story. A woman agreed to be a surrogate mother, the fetus was diagnosed with Down syndrome, the couple demanded an abortion, the surrogate mother refused, the couple decided not to sue, and now the surrogate mother is living happily with her daughter and partner.

They wrote a book, Saving Delaney, and got a nice write up in People. I hope their book does great!

Here are two quotes from the piece, though, that trouble me.
Two months into Andrea's pregnancy in 2012, prenatal tests showed that the baby had Down syndrome, in addition to other complications, Keston, 50, tells PEOPLE.

Doctors had said that the unborn baby, nicknamed "Peanut," would most likely suffer from blindness, autism and a severe heart condition – if she survived birth.
What the doctor said here is wrong. Factually wrong. I've talked to hundreds of parents over the past few years who have similar narratives, sometimes worse (child will die!), sometime less about the child (your marriage will end!), and all wrong. This is why I'm pro-information, and I want laws with teeth that demand doctors provide accurate information.

Doctors like this piss me off.

But I was also troubled by this:
"Delaney did not get the memo that she has Down syndrome," says Keston. "It does not limit her. She talks and she says sentences at two. She plays video games and Barbies with her siblings. She loves to dance when Ellen DeGeneres is on TV. When we watch her show, Delaney's got to get up and bust a move with Ellen."
I'm glad Delaney is doing well, but we must stop arguing that our children have value based on function. My son, 9, doesn't talk. Did he get the Down syndrome memo? I'd like the mothers (with whom I've discussed this on Facebook), as they move into this highly public phase of talking about Down syndrome, to be deeply conscious about how their "function-based" claims of value for Delaney exclude less functional people. I know it's unintentional, but the exclusion happens anyway.

And what if, 10 years from now, Delaney in fact has severe delays in some category? That will make her life no less valuable or their story no less awesome.

I was going to write a long essay about this, but instead, Meriah Nichols did it first with: Let Down Syndrome Define You.
Moxie, my love. It seems that some kids aren’t getting the memo that they have Down syndrome.

Seems like some parents are tickled that their child with Down syndrome is acting more like a typically developing child than not. That is, when their child is growing, learning, speaking, moving and acting as a typically developing child would at the same points in time. They don’t want their child to be “defined” by Down syndrome.
Moxie, I want you to get the memo that you have Down syndrome. And I want you to be defined by Down syndrome.
As my friend and writing partner Lawrence Carter-Long says ... SAY THE WORD!

Friday, April 15, 2016

Pope Francis and Disability as Spectacle

I've been writing about Pope Francis and Disability this week, and Lennard Davis reminded me of his useful essay from March of 2013, just when Francis was installed as pontiff.
On his way to the inauguration, Pope Francis blessed a baby and actually got out of his Popemobile to bless a disabled man. Pope Francis kissed the man, and then cradled the man’s head in his hands as he blessed him. Later in his inauguration speech, he spoke of the poor and the need for the church to deal with poverty. Babies, the poor, and the disabled — all traditional categories in need of papal beneficence...

...Is there something inherently special about being disabled that requires a blessing? Most people with disabilities do not expect to be blessed by a religious figure just because they are disabled. The charity model sees disability as some kind of lesser human status that needs alms and blessings. The medical model updates this vision seeing disabled people as in need of a cure. But what has been called “the social model” sees disability as something that society constructs for complex and varied reasons from the eugenic need to glorify normality to the requirement of having a category of the deserving poor (since most people with disabilities do indeed live below the poverty line). Disabilities are less in the person and more in the society.
Davis refers to this as Francis forging "his compassion-credentials," which I think is a great phrase, especially in the context of March before we knew him. I encounter compassionate people of faith regularly, but it's so easy to descend into the charity model.

I am routinely told that my son has a special relationship with God. I smile and respond, "I hope he has the same relationship with God as every other human."

There is something, though, in the way that religious figures deploy disability as a way to demonstrate their absolute committment to loving everybody, that disabled figures are brought forward to the Pope for special blessings, that media coverage around the pope and disability highlights spectacle and difference.

David Gayes, one of my favorite former students, wrote a gorgeous essay around this (with the first draft in my class), called, "No Beauty or Truth Excluded," around these issues. It;s behind the Taylor and Francis paywall, but here's the abstract:
I challenge the ableist and prejudicial assumptions that underlie common Scripture interpretations of people with disabilities. I assert that the lived experiences of this marginalized group, as well as the insights from the emerging field of disability studies, must be brought to the center in interpreting Scripture. The groundbreaking work of Nancy Eiesland, Donald Senior, and other theologians and disability thinkers offers valuable support to this contention.
You can read an early version of this (in which I participate as the abled, white, cis-male reader of Scripture) from David's presentation at our annual "Caritas et Veritas" symposium. Here's an excerpt [emphasis mine].
A third conventional interpretation of disability is that those with health conditions are here so that the able-bodied can “do” for them, and thus, feel good about themselves. We see this every time we see a poor crippled child walk across the stage to plead for money for the Jerry Lewis Telethon. We can donate our 10 bucks, and move on. 
On a recent trip that I took with a group, a deacon was relentlessly persistent in wanting to “experience” my “holiness” as a “crippled” person, by pushing my wheelchair without asking my permission or receiving any direction from me. He could only imagine himself in the role of the helper, and could not recognize our shared humanity.
One gets pretty weary of being other people’s service project.
This, at the core, is my critique of disability in the recent papal letter and so much well-intentioned but dehumanizing language and behavior around disability.

It's nicer than negative stigmas, but it's still stigma.

Thursday, April 14, 2016

Kasich, ADAPT, and the Disability Integration Act

The Disability Integration Act was introduced by Senator Schumer to, in the words of the important disability rights group ADAPT, "address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.2427) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option."

Recently, the DIA has gotten into the presidential campaign, thanks to direction action by ADAPT and the work of many other disability rights advocates. Clinton came out in favor of it, affirming her full support. Then Sanders added himself as a co-sponsor of the legislation (details from The RespectAbility Report). Next, ADAPT in Rochester, NY, went to a Kasich rally to try to get him on record.

Here's what happened:

Although ADAPT was first in line, waiting out in the cold for good seats, they were forced to the back of the auditorium (and from there protested their position). After, Kasich did not go on record about the DIA, but he smiled and kept saying he'd take pictures with them and got their numbers for his staff. So far, I haven't heard about any follow up. We'll see.

Kasich was quoted as saying:
Here's what I'm going to tell you," Kasich continued. "When everybody was like, they wanted to start saying, chanting my name and quieting you, I'm not going for that. Because I'll tell you, the developmentally disabled have lived in the shadows for 100 years. Okay, I know that. I don't want that to happen to anybody. And I'm not saying that because I'm a politician or I want your vote. I'm a human being just like you are."
Kasich took pictures with the group and got their contact information so his staff could get in further touch.
"Do you know why I want to do this?" Kasich told them, after the pictures. "Because Jesus wants me to." 

Tuesday, April 12, 2016

The Rights of Disabled Parents

Today I wrote my first piece for the Catholic website - Crux, talking about the problems with the references to disability in the recent papal letter. One argument - the rights of disabled parents, so easily abrogated, seems like a natural place for a moral agent like Pope Francis to invest some time addressing, but it's totally missing in Amoris Laetitia.

Here's a great map on the extent to which disability is considered when terminating parental rights, with ample resources on the right-hand tab (the map is accessible for screen readers. Each state pops up an alt-text). You will see that most states take at least some disability into account.

In other words, becoming or being disabled can result in the loss of your children.

I wrote this:
I’m struck by the narrow view of disability within the text, and the barriers it imposes between disabled and abled family members. Where is the papal message to disabled children about how they might respond to their families? More critically, where are the disabled parents?

Around the world, disabled parents face intense discrimination. They are too frequently stripped of their parental rights based on assumptions that disability renders them unfit. Wouldn’t this be a natural subject on which the papal position on the indissoluble nature of the family would be relevant?
Please read the whole piece!

Monday, April 11, 2016

The "Training Isn't Enough" Movement

Discussions around police use of force and disabled civilians usually turn quickly to training. In Chicago, for example, several high profile deaths resulted in mandatory CIT training for all Chicago officers - in policy anyway. It's not clear whether funds have been allocated and to what extent the training is ongoing, but that's another story.

But from many activists, particularly those most focused on the intersections of racism and ableism in police use of force, skepticism about training is becoming more prominent (it was always there). For example, Kerima Çevik was recently interviewed by Leroy Moore about policing and disability for Poor Magazine. It was a wide ranging interview and you should read all of it, but here's an excerpt:
Çevik: Racial profiling severely reduces the probability of police accepting my son, a Hispanic presenting male, larger than his peers, walking down the street with an unsteady gait, holding an iPad without challenging him. Which would inevitably lead to them trying to stop him, taking his iPad, and verbally demanding proof his speech device was his and their response to him not being able to respond would be to try and arrest him for stealing it. Situations like the scenario I just described, that I call ‘Mustafa’s Dilemma’ and what happened to Tario Anderson is what haunts me. That is where I am now. I am in this moment of polarization along racial lines seeking solutions to avert this and other nightmare scenarios I’ve witnessed occurring to countless disabled people, for the sake of my son and all his peers.. Training has been done. Trained officers used deadly force in encounters with clearly identified disabled teens and adults. I’ve changed my entire advocacy strategy based on this truth. The best way for a person in Mustafa’s Dilemma to remain alive and safe is to avoid any circumstance in which police engagement is necessary as much as humanly possible.

The painful lesson I’ve learned is that training initiatives fail. The fallout from the slew of deaths that spurred the Black Lives Matter movement is that the majority of those lives lost were disabled Black lives. I learned the police officers that shot both Paul Childs III and Stephon Watts were thoroughly trained and also knew the victims prior to the fatal encounters. This knowledge changed the focus of both my parenting and advocacy.
Later, Moore asks:
Leroy Moore: If it’s not police training then what are your suggestions and it can be for our community (For me I think we only focus on what police need and not what the community need)?

Kerima Çevik: Leroy I agree that we are focusing on what we think police need when we need to reduce police engagement and increase community supports that limit the need for police contact as much as possible. I won’t advise the community but I can tell you what I personally would like to see happen.
I’d like to see efforts made to establish a 911-type number for mental health emergencies/psychiatric disability related crises and more community crisis response teams to answer them. There is a myth that policy makers are exploiting based on a moment in history. This myth that after the Willow brook scandal, we just opened the doors of mental institutions and threw the patients out to wander the streets, and that to this day those same individuals are out there being a danger to themselves and others. The new fear factor story being added to that is we really need to bring back mental institutions. Victim blaming every deceased victim of a catastrophic police encounter with a person with psychiatric disability and sprinkling that disgrace with a healthy dose of posthumously declaring every white male mass shooter as a mental health patient achieves this fear driven train wreck. Uh nope! I think that funding being demanded for the return of the infamous mental institution model of mental health treatment, research, and ‘residential care’ should be given to desegregated, community supported mental health solutions that work in accord with the Olmstead Decision. I think we need to build on peer mentoring and peer respite centers, an idea that has already been proven successful in other parts of the country. I think we need to be seeking preventative solutions that solve the main series of events that ends in catastrophe for so many disabled victims, and that is the present situation where a mental health call is lumped in with a 911 call and therefore has police responding where they shouldn’t be. I think we should be increasing healthy inclusive school environments for neurodivergent students at school by paying school support staff wages that retain them and training them, not calling SROs to handcuff autistic children to squad cars.
Çevik and Moore are essential voices pushing for structural change, rather than simply trying to make the police less likely to misuse force against a disabled victim.

Saturday, April 9, 2016

Pope Francis and Disability (in the context of love, marriage, family)

The pope (or rather the social media managers) tweeted a line from "Amoris Laetitia" - the papal exhortation on love, marriage, and family, this morning. I didn't like it

I hadn't, however, read the actual document, and wanted to correct that. Here's a collection of relevant excerpts from the English translation with some initial thoughts at the end.

47. The Fathers also called particular attention to “families of persons with special needs, where the unexpected challenge of dealing with a disability can upset a family’s equilibrium, desires and expectations… Families who lovingly accept the difficult trial of a child with special needs are greatly to be admired. They render the Church and society an invaluable witness of faithfulness to the gift of life. In these situations, the family can discover, together with the Christian community, new approaches, new ways of acting, a different way of understanding and identifying with others, by welcoming and caring for the mystery of the frailty of human life. People with disabilities are a gift for the family and an opportunity to grow in love, mutual aid and unity… If the family, in the light of the faith, accepts the presence of persons with special needs, they will be able to recognize and ensure the quality and value of every human life, with its proper needs, rights and opportunities. This approach will promote care and services on behalf of these disadvantaged persons and will encourage people to draw near to them and provide affection at every stage of their life”. Here I would stress that dedication and concern shown to migrants and to persons with special needs alike is a sign of the Spirit. Both situations are paradigmatic: they serve as a test of our commitment to show mercy in welcoming others and to help the vulnerable to be fully a part of our communities.

82. The Synod Fathers stated that “the growth of a mentality that would reduce the generation of human life to one variable of an individual’s or a couple’s plans is clearly evident”. The Church’s teaching is meant to “help couples to experience in a complete, harmonious and conscious way their communion as husband and wife, together with their responsibility for procreating life. We need to return to the message of the Encyclical Humanae Vitae of Blessed Pope Paul VI, which highlights the need to respect the dignity of the person in morally assessing methods of regulating birth… The choice of adoption or foster parenting can also express that fruitfulness which is a characteristic of married life”. With special gratitude the Church “supports families who accept, raise and surround with affection children with various disabilities”

195. Growing up with brothers and sisters makes for a beautiful experience of caring for and helping one another. For “fraternity in families is especially radiant when we see the care, the patience, the affection that surround the little brother or sister who is frail, sick or disabled”. It must be acknowledged that “having a brother or a sister who loves you is a profound, precious and unique experience”.  Children do need to be patiently taught to treat one another as brothers and sisters. This training, at times quite demanding, is a true school of socialization. In some countries, where it has become quite common to have only one child, the experience of being a brother or sister is less and less common. When it has been possible to have only one child, ways have to be found to ensure that he or she does not grow up alone or isolated. 

197. This larger family should provide love and support to teenage mothers, children without parents, single mothers left to raise children, persons with disabilities needing particular affection and closeness, young people struggling with addiction, the unmarried, separated or widowed who are alone, and the elderly and infirm who lack the support of their children. It should also embrace “even those who have made shipwreck of their lives”. This wider family can help make up for the shortcomings of parents, detect and report possible situations in which children suffer violence and even abuse, and provide wholesome love and family stability in cases when parents prove incapable of this. 

What's striking here is that in all of the cases the disabled person is the object. The family is inherently abled in this vision, being exhorted to provide care to the afflicted, and being blessed for providing care. Nowhere is the parent who is disabled, providing care for the abled child, for example. Nowhere is the disabled person's independence and decision-making affirmed. 

This is a kind, charitable, paternalistic vision in which the function of the disabled is to demonstrate the goodness of those who care for them. Such, anyway, is my first reading. 


The Pope Objectifies Disability

UPDATE: See this post for the full passages on disability from the recent papal document on marriage/family.

I made my leap into public writing when Pope Benedict stepped down and Pope Francis was elected. Both events had strong medieval tendrils and, for awhile, much of the rest of the press kept being confused what Francis was saying. As a medievalist, I seemed to have a head start.

It's not my natural beat, though. I'm not a Catholic and I'm not truly expert in the machinations of the 21st century church (unlike the 13th century church, where I either am expert or I know the right experts to ask). Eventually, the press caught up or hired experts (Candida Moss, Elizabeth Bruenig, etc), and I moved off into both higher ed and disability journalism.

This morning @Pontifex tweeted, in a string of tweets about the family (and in the broader context of papal pronouncements about family, about divorce, and other topics):
 Although the word "mutual" is intriguing, in general this point directly to the charity model of disability. Disabled people are here objectified as an object to demonstrate the virtue of the (presumed) abled family.

In other words, this isn't really helping.

Right now, in Illinois, a major Catholic charity is claiming that it deserves funding under the rubric "community," despite the fact that it's clearly an institutional setting. I'll write more about that, I hope, in the weeks and months to come.

Published work on the papacy:

Friday, April 8, 2016


I'm at George Washington University today for a conference on: "Composing Disability: Crip Ecologies," a conference focusing on forms of narrative, storytelling, exchange, communication, and more. Here's the precis:

Crip Ecologies: This symposium seeks to bring together scholars, artists, advocates, and activists working across the fields of ecocriticism, disability, and queer studies. Our goal is to think through the queer interchanges of environments and bodies in more radical ways.

It's been a gorgeous set of papers so far and I'm excited to join a panel at the end of the day on "Digital Amphibians." We'll be discussing the various ways we operate in different narrative and discursive environments. Here's the roster:
5:15-6:30 Roundtable: “Digital Amphibians: Parallel Lives and Media Publics” (Jack Morton Auditorium)
Sponsored by the GW Digital Humanities Institute
Alexis Lothian (University of Maryland), fandom, social justice, digital media
David Perry (Dominican University), disability journalist and activist/author
Rachel Vorona Cote, freelance writer
Alice Wong (virtually from UCSF), Founder of the Disability Visibility Project
My goal is to introduce my notion of being within and without discipline, by which I mean doing things in a controlled, organized way, but more about my struggles to be amphibian, to operate within discipline (History, Medieval Studies, Academia) while pouring myself into this modern, journalistic, loose, discourse.

It's not being streamed, but it will be tweeted under the hashtag #CompDis16

Thursday, April 7, 2016

Diversity and Job Requirements

I've been tracking job requirement issues over the past few months, so I was pleased to see this from Hennepin County (Minneapolis, more or less, where I used to live):
Say you have been tinkering with computer brains your whole life, but your college degree isn't in computer science or a related field. Chances are you won’t be considered for an IT job interview in many public and private companies.
Same goes if you are trying to secure a general maintenance position in Minnesota without a valid driver’s license — even though you may not be required to drive for work-related duties.
It’s common for employers to place a list of qualifications on their job applications, including narrowly defined degrees, years of experience and driver’s licenses. In many cases, said Hennepin County Workforce Development Director John Thorson, some of those qualifications tend to discourage applicants from applying for positions.
Now, he’s changing that.
The article cites a number of changes. It doesn't specifically talk about physical requirements and disability. If one of the local people wanted to reach out and let me know what they say about that, I'd be interested to know what he says.

 See previous coverage here:

Wednesday, April 6, 2016

A Good Day to be a Teacher

Today at my university, over 250 students will spend the day sharing the fruits of their labors. The presentations will range from short-term semester-long projects to panels and talks on capstone projects on which the students have been working for years. We'll have a presentation on beekeeping, staged readings of 10-minute plays, music inspired by Dante, and so much more. Here's a video.

This is a video (captioned) showing Dominican students talking about their research. It's a year old, so many of these students have gone on to advanced degrees, good jobs, or other opportunities.

I'm the director of the Undergraduate Research Scholarship and Creative Investigations program (URSCI) and organized (with so much help!!) the expo today. It's been an enormous amount of work, as this is my first expo, but worth it.

I'll be tweeting about it today from the expo, proudly.

Tuesday, April 5, 2016

Sanders on Sub-Minimum Wage

Yesterday the Sanders campaign released a statement on New York's new 15$ minimum wage law. So much credit goes to the fight-for-15 folks who have the seemingly impossible into a new norm in progressive states around the country.

On disability, Sanders wrote [my emphasis]
“I’m proud that today two of our largest states will be increasing the minimum wage to a living wage of $15 an hour – raising the wages of some 9 million workers in this country. Not too long ago, the establishment told us that a $15 minimum wage was unrealistic. Some thought it was ‘pie-in-the-sky.’ But a grassroots movement led by millions of working people refused to take ‘no’ for an answer. Loudly and clearly workers said, ‘yes we can increase the minimum wage, not just to $10.10 an hour, not just to $12 an hour, but to a living wage of $15 an hour.’
“This campaign is about building on these successes so that everyone in this country can enjoy the dignity and basic economic security that comes from a living wage, no matter what state they live in. That includes ending the subminimum wage for tipped workers and persons with disabilities.
As noted by RespectAbility, this isn't Sanders' first statement on subminimum wage, but I like seeing it here. I want the issue firmly entwined with the fight-for-15$ movement.

Monday, April 4, 2016

How to Report on Suicide - A new report

I spend a certain amount of my time critiquing reporting on disability: Inspiration porn, mercy killing discourse, how disability links to police use of force, and of course so much more. My basic premise is that journalism matters, language matters, and often the media fails to handle admittedly tricky topics very well. This is especially true for general reporters, I feel, who might have limited experience handling specific topics.

Suicide is one of those areas where we have strong evidence that reporting can directly influence how other people experiencing suicidal ideation respond, so I was pleased to see this report -
Recommendations for Reporting on Suicide - released last week. It's from a huge array of medical and journalism experts.

Some findings:
More than 50 research studies worldwide have found that certain types of news coverage can increase the likelihood of suicide in vulnerable individuals. The magnitude of the increase is related to the amount, duration, and prominence of coverage.
Risk of additional suicides increases when the story explicitly describes the suicide method, uses dramatic/graphic headlines or images, and repeated/extensive coverage sensationalizes or glamorizes a death. ​Suicide Contagion, or"Copycat Suicide," occurs when one or more suicides are reported in a way that contributes to another suicide.
Covering suicide carefully, even briefly, can change public misperceptions and correct myths, which can encourage those who are vulnerable or at risk to seek help.

Friday, April 1, 2016

ABLE Act Reforms

Over a year ago I wrote about problems with the ABLE Act, the well-intentioned bill that the divide-and-conquer wing of the GOP was tweaking into semi-irrelevancy. It passed with a definition of disability that only included those disagnosed before age 26, a sign of the way too many politicians like to differentiate between the worthy and unworthy disabled, as they do between the worthy and unworthy poor. I listed lots of rhetoric showing this pattern, then asked:
As we head into the final few weeks of the 113th Congress, questions remain. Will ABLE pass? What definition of disability will emerge in the final bill? Who will Congress consider worthy?
This is why Courtney’s story is so important. I am the father of a boy with Down syndrome and am personally invested in this bill’s passage. I know, though, that whatever passes, my son — diagnosed since birth — will be included in the definition. No one wants to take his benefits away. But what about Courtney? What about the person who develops disability through injury, age or disease later in life? They too need the ability to save, to work and to garner what independence they can.
This is the danger of playing politics with disability. Definitions are complicated, and needs are real. Instead of trying to divide and conquer, let’s pass a bill that can offer dignity and security to all.
Why should my son, diagnosed with a disability 5 minutes into his life, be treated better than someone who gets a traumatic brain injury on their 27th birthday?

I have to say, though, that disability politics are never simple left-wing/right-wing. There are so many GOP officials who do great work on disability, and good disability legislation routinely passes with huge majorities. So I read this piece on tweaking ABLE with some optimism.
Under the latest proposals, people with disabilities who are employed would be able to allocate extra money each year to their ABLE account. Beyond the existing annual cap of $14,000, those who are working could also deposit their earnings up to the federal poverty level – currently $11,770 for a single person.
In addition, eligibility for the accounts would be expanded to include people with disabilities that onset by the age of 46, an increase over the current requirement that conditions must exist prior to age 26.
Finally, the lawmakers want to allow families to be able to rollover money they’ve saved for an individual with a disability in a 529 college savings plan to an ABLE account.
Let's keep pushing for better policy.