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.
And:
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.”
And:
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.
WHAT WILL I LEARN:
  • 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
WHO SHOULD TAKE THIS COURSE:

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.

Thanks.

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!