Weekly Reading List

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Last week's best disability reading, presented a day later than usual!

Bevin vetoes $400,000 for the disabled
Scott Hartman, Cincinnati.com - April 28, 2016

Gov. Bevin’s statement about vetoing funds for developmental disability agencies is about 1 fifth correct, and 4 fifths crap. There is some truth in the idea that it’s good for non-profit organizations to go after sources of money other than the government. Diversified funding makes an organization stronger and more financially resilient. It can also help foster greater independence. An organization with a bunch of different funding streams has more freedom to take controversial advocacy positions, because no single funder has the power to punish with the purse. On the other hand, the endless dash for cash can and often does lead organizations to forget their core missions, and craft their programs to reflect what funding agencies and foundations want to see, instead of what the organization itself wants to do. And of course, it’s truly Orwellian Doublespeak for a state governor to suggest that a budget cut is actually a good thing for non-profits.

Jillian Mercado made it as a model with a disability. Here’s what she wants next.
Caitlin Gibson, Washington Post - April 28, 2016

I was really happy to read Caitlin Gibson’s article on Jillian Mercado, because it helped answer a nagging question I’ve had since I first heard about Jillian’s modeling career … Is someone paying attention to the messages all of this is sending? It seems like Jillian is paying attention, which is the best possible answer. She seems to know all of the ways that good things … like a disabled woman succeeding in the modeling industry … can convey not-so-good messages if nobody bothers to be careful about it. Jillian is careful, and obviously knowledgeable enough to negotiate and direct her own messaging. We can all learn from her, especially those of us attempting to say something consistent and public in our work.

Glass Ceiling Cripples
Smart Ass Cripple - May 1, 2016

This takes nothing away from those of us who get noticed as faces and voices of disability, but I do agree it's worth remembering that the condition of the "floor" for disabled people is probably more important than how high the "ceiling" is, or whether we can break through it. And of course, Smart Ass Cripple says in a much cooler way than I can.

How Bad Is Gary Owen’s Comedy Routine on Showtime?
John Franklin Stevens, Huffpost Impact - April 26, 2016

The exact contents of the comedy routine matter less to me than the quality of the argument. It's so easy for people to reject any show of concern about offensive comedy as humorlessness, or as an attempt to censor an artist. As Mr. Stevens points out, criticism isn't censorship, and being publicly criticized doesn't make a thing high art, either. At some point, comedians are going to have to come to terms with the fact that audiences' tastes change. Fewer people are going to enjoy laughing at disabled people, and for every one person who tries to shut a comedian down with a petition, there are probably hundreds more who just scoff, move on, and decide the person is a crap comedian. I feel like that's the really important thing happening with this kind of comedy ... it's not just offensive, it's incredibly hacky, and that's deadly for comedy.

Uber's services for the disabled lack actual cars
Heather Kelly, CNN Money - May 2, 2016

Uber has a track record of bad citizenship in regard to serving people with disabilities. The company spent a lot of time studiously and explicitly refusing to do anything about drivers who just plain didn't want to deal with disabled passengers. That said, i think that some sort of Uber-like service may be an important component of accessible transportation for disabled people in the near future. When I was in Independent Living, I tried a couple of times to generate interest in recruiting disabled people who owned their own accessible vehicles to provide individual rides to disabled people who didn't. Insurance and a certain amount of generalized apprehension was the main obstacle. But a known entity like Uber ought to be able to make the process simpler and more secure for potential drivers with accessible vehicles. It might even help more disabled people finance the purchase of accessible vehicles. It seems like a good idea, but it all comes down to the math, I suppose, which will either add up, or not.

The Tyrion Test, Updated

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Earlier today, someone unearthed and tweeted my old blog post about what I called the Tyrion Test, a disability version of the Bechtel Test. I named it the Tyrion Test after Tyrion Lannister from Game Of Thrones, one of the best disabled characters I have ever seen. After reviewing my version, I decided it’s time to try again, and offer a simpler test of disability depictions in popular culture, one that is a closer parallel with the original.

The Bechdel Test is a semi-famous “test” to evaluate how women are depicted in popular culture … TV shows, movies, books, and the like. To recap, a piece of culture “passes” the Bechtel Test if it:

1) Features at least two women, who
2) Talk to each other,
3) About something other than a man.

So, although I still endorse my original formula, I’d like to offer a simpler one:

A disability depiction passes the Tyrion Test if it:

1) Features two or more disabled characters, who
2) Talk to each other,
3) About something other than their disabilities.

I still think it also matters whether disabled characters have real agency, whether or not they are fully developed, and what kind of role they play in their stories. I also think it’s good when writers avoid leaning on a few tired disability tropes and stereotypes. But maybe this simpler test is enough. It's certainly easier to remember and apply.

What do you think? Are there other criteria you use to evaluate disabled characters and disability-based stories in popular culture? How do disabled characters in pop culture stand up to this test or others? Let me know in the comments!

Throwback Thursday

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Cartoon characters Mr. Peabody, the dog, and Sherman, his boy, in front of The Wayback Machine

One year ago in Disability Thinking: Hospital Blogging! Part 5

Last year, I spent a week in the hospital with pneumonia. I blogged about the experience, and exactly a year ago today, I posted this wrap-up after coming home. My hospital experiences have been mostly decent, so why do so many disabled people have terrible histories with hospitals? One of my theories is that in most case that go bad, everything starts out just fine. Then something happens … a staff member pisses off the disabled patient, or the disabled patient pisses off the staff. Trust and respect are almost immediately destroyed, and are replaced by the worst stereotypes the disabled patient and staff have of each other. Disabled people are nit-picky whiners, manipulative, secretive, over-vigilant, and spoiled. Doctors and nurses all hate disabled patients, disapprove of them, and want to bang them all in nursing homes at the least excuse. Once things start to go bad, it’s very hard to get them to go in the other direction. That’s what I think happens. I don’t know how to fix it, and I’m acutely aware that I’m lucky it hasn’t happened to me … yet.

Two years ago in Disability Thinking: Questions Not Asked

Yes, there is a pattern here and it seems like disability bloggers are well aware of it. Every April, we get a flurry of heartwarming news stories about disabled kids being invited to the high school prom by non-disabled students who are presumed to be doing it as an act of kindness or charity. And then a relatively small handful of disability bloggers and commenters try to remind everyone that disabled kids are human beings and not motivational characters in other peoples’ morality plays. We probably sound really sour and cynical. But I really think it’s hard to dismiss these more specific questions about the journalism side of the routine. It’s pointless and probably kind of mean to vent our frustration on the students, families, or maybe even the schools involved. But journalists are supposed to ask questions, even about “good news” stories, and these are important questions that could yield truly interesting answers. We’re all still waiting for a real story about disabled kids, high schools, and the prom.

Language, Disability and the Mashed Potato Mountain

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Photo of Devil's Tower, Wyoming at night, from the film Close Encounters of the Third Kind

I have been thinking a lot lately about "person first" and "disability first" approaches to referring to disability and disabled people. I'm going to use this blog post to work through my thoughts on the subject. The following is what I think this is all about. I could be wrong, and I would be happy to hear from others who have different thoughts.

For a long time, (not sure how long,) saying "person with a disability" (person first language) was almost universally understood to be the progressive, social model way of talking about disability. It was the formulation advocated and taught by disabled people, (people with disabilities), to non-disabled people who inappropriately called us "disabled people," "handicapped," or "differently-abled." This is what I picked up in the early 1990s, when I was making the transition from someone who happened to be disabled into being a conscious part of the disability community. I was waking up to my disability identity and part of that was using "person first" language.

Fast forward to now, or maybe 2 to 5 years ago, and there is a pretty energetic counter-movement within the disability community towards saying "disabled person," and viewing "person first" language as an ableist, medical-model imposition by non-disabled people who are all too eager to "able-splain" our disability experiences to us. A lot of disabled people, myself included, maintain an uneasy tolerance for both approaches. We're not quite ready to condemn the formulation outright. But although we say it's a personal choice, it feels like there is an unspoken implication floating around out there that people who still use "person first" are uncool, maybe a little self-hating, and certainly misinformed.

As it was explained to me, the reasoning behind "person first" language is to emphasize our personhood, and more significantly, to assert that disabilities are merely characteristics, not defining qualities or end-state outcomes. Disabilities are "things" that we "have", not what or where we are. There is supposed to be some sort of comfort in that, a way of shrugging off disability as "nothing but a thing" ... not anything that means anything beyond dry practicalities.

The rationale for switching back to "identity first," as I understand it, is that "person first" seems to "protest too much." It feels a bit too eager to argue our personhood when our personhood should be beyond repeated linguistic justification. Also, many of us do feel that we are at least partially defined by our disabilities. Some disabilities are much more integrated into a person's life than others. An amputee may reasonably feel that his or her disability really is separate, almost incidental, and external to him or herself. That's harder to believe if you have cerebral palsy, quadriplegia, or autism, which have with physical and social effects that permeate pretty much every part of your life. And living your whole life with disabilities makes it even less sensible to believe in the separateness or insignificance of disabilities. Finally, many of us maintain that "disabled person" underscores the ways that we are "disabled" by an ableist society, which is a key concept of the social model of disability.

I have mostly switched to using "identity first" language when referring to myself. On the one hand, I came of age in the disability community at a time when "person first" was the way to go. So, I don't feel any ill-will about it, and I think there are good arguments in favor of using "person first."

On the other hand, I have come to feel instinctively that my disabilities are woven deep into the fabric of my life and personality. I no longer see my disabilities as some kind of add-on or baggage I carry with me. I am a disabled person. At the same time, saying that doesn't make me feel the least bit bad or "less than," any more than saying I was gay, if I was gay, or black, if I was black, or a woman, if I was a woman. It's an identity that includes certain physical experiences and social disadvantages, but it's part of me, so there it is.

Which leads me to think that maybe "person first" and "identity first" are also markers of where a person is in his or her journey with disability. Maybe "person first" really does make sense for people still working on how they relate to their disabilities. Maybe "identity first" signals a kind of final or maybe intermediate peace or equilibrium with disability. Again, that sounds a lot like a value judgment, but I really, honestly don't mean it to be. As I said before, some kinds of disabilities really are more external and can be kept at arms length and it works fine, while other disabilities make that stance almost nonsensical. So that's another factor.

One thing is absolutely clear. All of this matters. Language discussions like this should probably be less contentious than they often are, but they're not pointless. Like the guy building the mashed potato mountain in Close Encounters said, "This means something. This is important."

Disability.TV Podcast Preview: Tyrion Lannister’s Prison Conversations

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On left: Oberyn Martel, on right: Tyrion Lannister and Jamie Lannister

I am a little behind as usual, but my goal is to upload the next episode of the Disability.TV Podcast by Saturday the 30th, Sunday, May 1st at the latest. Episode 32 will explore two conversations in two successive episodes of Game Of Thrones, Season 4. Each of the two scenes features Tyrion Lannister, one of the most in-depth disabled characters in TV history. In each scene, Tyrion has a conversation that digs deep into the meaning of disability, while also illuminating some of the key themes of the whole TV and book series.

Watch the two scenes on YouTube. They stand alone pretty well. You don’t really have to have seen much Game of Thrones, or even understand what the story is about. And if you have any intimate understanding of disability, you’ll “get” these scenes on a level that most viewers may have missed entirely.

Game Of Thrones: S. 4, Ep. 7 - Mockingbird
Tyrion Lannister and Oberyn Martell

Game Of Thrones: S. 4, Ep. 8 - The Mountain and the Viper
Tyrion & Jaime talks about Orson the Beetleslayer

I’ll have more to say about these prison cell conversations, and what I think they all mean in relation to disability, in the podcast.

Weekly Reading List

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Last week's best disability reading:

You are always losing until you win!
Leah Smith, Center for Disability Rights - April 18, 2016

There are many places to learn about ADAPT and the organization's main policy issue, the "institutional bias" in long term care. But this is a particularly good overview of a simple issue that's surprisingly hard to describe simply. It's also an important reminder that all of the most important changes take time. And by time, we're talking about years, sometimes decades, not months, weeks, or a single Election Day.

DWP drew up plans to charge disabled people for fit-to-work appeals, internal documents reveal
John Stone, The Independent - April 21, 2016

It bears repeating ... anyone who is interested in the future of disability policy in the United States should spend at least some time getting up to speed on what's been happening in the United Kingdom. Even though this money-squeezing policy wasn't even introduced, it's telling that people were thinking about it. It's also no good simply being shocked and morally offended. These kinds of policies are the result of more than just personal ableism. They make total sense to people who are convinced, as an article of faith or ideology, that disability programs are being weighed down by huge numbers of people who aren't "really disabled," by some narrow, conventional definition of what disabled means. They don't necessarily oppose supporting disabled people. It's just that their concept of a "deserving" disabled person allows for maybe ten actual people in the whole country. This idea hasn't kicked in much here in the U.S., but the mindset is out there, ready to be exploited.

Blogging Against Disablism Day 2016
Diary of a Goldfish - April 1, 2016

I'm going to do this. On May 1, I'll post a piece on this blog about "ableism." It will probably be more exploration of the word itself ... how it's used and what it means to people who use it, and maybe why the word seems to make others see red. For some reason, "ableism" is a polarizing word, far more than can be explained by the emotions inherent in the actual subject. Stay tuned. I also encourage my fellow disability bloggers to write something about ableism, disability discrimination, or whatever you call it, for the May 1st Blogging Against Disablism Day.

The Joy of Trespassing
Smart Ass Cripple - April 17, 2016

I used to be underwhelmed by the "Doctors said I wouldn't live past X, but I proved them wrong!" trope in disability culture. Maybe it's because my father was a doctor. He taught me early on that most of what doctors say are educated guesses, and shouldn't be taken as absolute clairvoyant predictions, just informed advice or probability. Also, my doctors generally wanted me to do well, so I never felt I was "proving them wrong" by walking, being smart, or not dying. But once again, Smart Ass Cripple gives me a fresh take on the idea of exceeding expectations, and why it's important. I like the idea that we are "trespassing". I also think it's important to recognize that at least some doctors seem to make pessimism a kind of religion ... or at least a guiding principle ... when dealing with parents of disabled kids. Now, I am a pessimist. I like being mentally prepared for the worst, and pleasantly surprised when good happens instead. But I think maybe parenting is one part of life where pessimism isn't helpful, and when disabled kids are involved, can be really destructive.

If You Give A Mouse An Accessible Playground
Mary Evelyn, What Do you Do, Dear? - April 25, 2016

How is it that when parents of kids with disabilities write about their experiences, some make me want cry with exasperation and punch something, while others make me cry with real joy and a feeling of connecting across a mental chasm? If you think parents can't write about disability with insight and honesty, and without being maudlin, you need to bookmark "What Do You Do, Dear?" Mary Evelyn isn't all sunshine and light, nor is she all "Woe is me!" Ultimately, I think, I'm on board with whatever she's thinking and feeling because she doesn't take her situation too seriously, and because she understands better than most parents exactly where the problems and struggles of disability come from ... not from the disabilities themselves, but from all the human-made barriers that don't need to be there but so often are. That's what's missing from most of the parent writings I read.

Join The Club

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Colorful representation of the word EXTRACURRICULAR

Do kids with disabilities who go to inclusive, non-segregated schools miss out on the bonding and friendship that can happen between disabled kids when they are grouped together in self-contained classrooms and “special schools?”

One of the nicest things I see and read about in disability blogging and social media is when disabled people are close friends with other disabled people, and a lot of the time, they met when they were young, around high school age. There's a unique bond there that I never had when I was a kid, and haven't had as much as I'd like even in adulthood. Like so many people growing up with disabilities, I saw going to school with “normal” kids as a signal that I was “normal.” I suspect that led me to the mistaken idea that being friends with other disabled kids would make me “more” disabled. There were two or three other disabled kids that I knew of in my high school, and I never for a moment wanted to even know them. More significantly, nobody for a moment suggested I should.

I wonder if we inadvertently deny kids an important kind of bond when we steer them away from self-contained classrooms and "special schools." Inclusion is best, but not because it keeps disabled kids away from each other. That is more of a bug than a feature. We may be able to fix this, though, without reverting to segregation.

High schools should support the formation of disabled student groups. I’m talking about extracurricular activity groups with the same kind of mission and status of other semi-official student groups, except that they would be run by disabled students. While integrating with the full, diverse population of the school, disabled students would also have the opportunity to band together now and then, share experiences, support each other, and, if they want, take on some of the barriers and problems they all face as disabled students in a regular school.

I think it would be really hard to do this well. For one thing, you’d have to find just the right kind of adult advising the group, and there are probably half a dozen or more teachers in every school who would think they’re perfect for the job, most of whom would screw it up. They’d dominate the agenda, half the time turn it into an incubator for media-friendly inspiration pron. It would also bereal challenge to make these groups attractive to all the disabled students, not just the few perfectly adjusted little angels everyone likes already. And the schools would have to be ready to deal fairly with these groups if they did decide to do real advocacy and raise some uncomfortable issues about the school community. Above all, these groups would need the creativity and leeway to make themselves interesting enough so that the whole school would respect them, at least as much as they respect any other non-sports student club with a page in the yearbook.

It’s a tall order, but when it worked, it would be so worth it.

I would love to hear about any actual high school disability groups readers might have been part of or heard about.

Thinking Today

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Illustration of a human head in profile, with four different colored gears inside the head

People Who Are Not Disabled Need To Check Out #AbleismExists Right Now
Elyse Wanshel, Huffington Post - April 22, 2016

This week while on a blogging break, I enjoyed following the #AbleismExists hashtag. I didn’t know until yesterday that Dominick Evans started it, but I’m not surprised. Dominick is very good at talking about ableism in an accessible, relatable way, and drawing out people who experience ableism on a regular basis. The hashtag produced some really thought-provoking tweets. Reading them this week I found myself nodding my head a lot. So, so much is familiar. Not all of it … ableism is diverse and it doesn’t come all in one complete package … but I’ve experienced a lot of it myself, and what I haven’t experienced I have seen happen to other disabled people.

All of which brought back to mind one of the most persistent puzzles about “ableism” and what I like to think of as "ableism skeptics." These are the people who may or may not be deeply discriminatory themselves towards disabled people, but who have some sort of problem with the idea of ableism. The puzzle is how many of them truly doubt that disabled people experience significant stigma and discrimination, and how many just have some kind of cranky objection to the word itself.

And, does it make a difference which people think what?

I don’t think it makes a difference to how we experience ableism, but to me it’s still an interesting question. It’s one of the reasons I named this blog Disability Thinking.

Re: #CripTheVote

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#CripTheVote logo with a ballot box with four disability symbols on the front.

On Saturday night at about 11 PM Eastern, someone contacted me, Alice Wong, Gregg Beratan, and others to propose collaborating on a planned website about disability and politics that would be called #CripTheVote. This person had already bought the domain name cripthevote, and had a basic template set up. He also had a Twitter account with that name, and a Facebook page.

While the three of us who started the #CripTheVote hashtag discussed our response, others he contacted started tweeting their objections to this appropriation of the #CripTheVote name. We just sent our compete response to the original email. Here is what we said:

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First of all, we have been working on a response to your original email for part of last night and most of today. We are three people living on opposite sides of the US, so it took us a bit of time for us to agree an approach. In the meantime, others responded to your email to them with their own thoughts. We happen to pretty much concur with what they have been telling you via Twitter.

We appreciate your changing the name of your website to something other than #CripTheVote. We hope that will be taken care of soon. There are three main reasons why we do not wish to collaborate with your project, and why we objected to your using #CripTheVote for its branding:

1. We have worked hard to make our project disability issue focused, nonpartisan, and for the most part, non-editorial. That is, the three of us have generally not inserted our own political views into the conversation. While a website that collects various Op-Ed type pieces on disability and politics is a fine idea, it is not compatible with what we are doing with #CripTheVote.

2. There may be confusion by your readers on your involvement in #CripTheVote, and our connection with your website. It is unfair and incorrect for people who visit your website or tweet with you to believe you are affiliated with us, or we with you. It’s clearly stated in numerous articles and blog posts that #CripTheVote is run by 3 people and you are not one of them.

3. It also disturbed us that you bought the domain name, set up the template for your website, opened a Twitter account, and a Facebook page, all using #CripTheVote … and only then began contacting a whole host of participants, (including us), without first discussing your idea with us. We feel ambushed, and that would be a bad way to start any new collaboration.

Again, we are glad you have agreed to change the name of your project. Your idea is great, but it is separate from #CripTheVote and should not be confused with #CripTheVote. There is room for multiple projects and campaigns on this subject, and no need at all to piggyback on other each others’ ideas.

Gregg Beratan
Andrew Pulrang
Alice Wong
#CripTheVote Co-Partners

PS The online ‘homes’ for #CripTheVote are on Twitter as a hashtag and these two websites since its inception on January 27 2016:

http://disabilitythinking.com/election-2016-cripthevote/
https://disabilityvisibilityproject.com

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We greatly appreciate the support we have gotten from others on Twitter. Hopefully, the name will be changed quickly, and we can get on with discussing disability issues in the election.

Addendum:

We got a reply to our message and Alice, Gregg and I consider the matter satisfactorily closed.