Thursday, October 15, 2015

Throwback Thursday

Illustration of the time machine from the film "The Time Machine"
Two years ago in Disability Thinking: Autism, Advocacy, and the Choices of “Parenthood”

How appropriate that two years ago I was writing about disability on “Parenthood,” as today I have listed the show among those I plan to discuss on the rebooted Disability.TV Podcast.

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Disability.TV Podcast Reboot: Upcoming Topics

Disability.TV logo, picture of an old-style TV set with four disability symbols on the screen, and the website address: disabilitythinking.blogspot.com
As I announced yesterday in a brief episode of the Disability.TV, I have decided to "reboot" the podcast. It will start November 30 with a discussion of one of my favorite episodes of The West Wing, dealing with President Bartlett's Multiple Sclerosis. Episodes will go up monthly, and each one will focus on either a TV episode dealing with disability, or on a disabled character on a TV show.

I hope it will be a lot easier and a lot less tedious discussing these smaller bites of TV shows. Usually, disability makes the biggest impact on TV in specific moments, and with a few standout characters ... another reason I think this might be a better approach.

If you are interested in disability on television, please have a look at this list of topics. Let me know which ones you would look forward to the most, and whether there are other episodes and characters you would suggest.

Even better, if you would like to join me for a discussion on the podcast, or maybe send in some written or audio comments, please do let me know so we can set it up.

Here is the list of topics I have so far:

The Cage / Menagerie Conundrum 
S. 1, E. 1 and S. 1, E. 11 & 12: “The Cage” & “The Menagerie Parts I and II” 

Calling The Klingon Kevorkian 
S. 5, E. 16: “Ethics” 

Advocate Or Asshole? 
S. 2, E. 6: “Melora” 

The Story of House’s Leg
S. 1, E. 21: “Three Stories” 

Character Profile: 
Dr. Gregory House 

Chief Ironside, Peer Counselor 
S. 1, E. 11: “Light At The End Of The Journey” 

President Bartlett's China Trip 
S. 6, E. 9: “Impact Winter” 

Character Profile: 
Joey Lucas 

Tyrion’s Prison Conversations 
S. 4, E. 8: The Mountain and The Viper” 

Character Profile: Bran & Hodor 

George Fakes A Disability 
S. 9, E. 1: “The Butter Shave” 

Character Profile: Mickey Abbott 

Hank’s Epiphany 
S 5., E. 11: “Promises” 

Max Melts Down 
S. 5, E. 18: “The Offer” 

Character Profile: Jewel 

Character Profile: Claudius 

Character Profile: Dr. Kerry Weaver 

Winchester & The Piano Man 
S. 8, E. 19: “Morale Victory” 

Character Development Instrument
S. 1, E. 1: “Pilot” 

This Is Why We Have No Friends
S. 3, E. 11: “The Friend” 

You can get in touch with me by sending an email to: apulrang@icloud.com. Or, contact me by Twitter: @AndrewPulrang, or Facebook Messaging.

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Tuesday, October 13, 2015

Inspiration Porn: High School Gestures

Silhouette illustration of a young man and woman dancing at a formal dance
I am still working on a sort of master post on Inspiration Porn, but I want to take another detour to talk about a subset of this loosely defined phenomenon. I'll call it High School Gestures, referring to three practices that have become popular in American high schools and a familiar trope in "feel good" media:


2. Organizing and hosting "special" prom events, specifically for disabled students.

3. Allowing a disabled student to "run a play" with a sports team.

Three key factors make these practices a type of Inspiration Porn:

1. They are all intended to be “good deeds” for people assumed to be stigmatized and unable to make satisfying social lives for themselves.

2. Media coverage of these events almost always focuses on the kindness of the organizers, relatively little on the disabled individuals these events are supposed to benefit, and not at all on the stigmas and barriers disabled students face every day in their effort to participate in school social life.

3. The events are often further interpreted as encouraging signs that "the kids today" may not be going to Hell after all ... the premise being that on every other day it seems like they are, an unfair and insulting idea in itself.

Labeling these kinds of events Inspiration Porn obviously indicates that I have problems with them, and I do. They are usually well meaning, but contrived and, in a sense, fake. I worry that later in life, some of these disabled youth will look back on these “feel good” events and and cringe at how patronizing they were, and wonder how they allowed themselves to be treated as objects of pity and charity. No matter what the specifics, these events are almost always reported in the same sentimental way, so that even when a specific event is really sincere, it still comes off as weepy Inspiration Porn. The worst thing, in a way, is that these are usually “one off” gestures that benefit one especially loved disabled person, while most disabled kids are unaffected.

Let’s be clear. An unstated premise of these gestures is that “normal” high school social rituals are inherently exclusive and off-limits to most disabled students. That is the problem, and these flashy gestures don’t do much to change the situation. It’s like giving a box of extra-tasty chocolates, just once, to starving person, instead of what they need, which is a reliable diet of nutritious food.

In addition, a lot of disabled people themselves find these kinds of practices truly vile and offensive, in a very personal way. And I think it’s important to emphasize that this feeling is real, not intellectualized or theoretical, or deployed merely for rhetorical purposes. And no, it doesnt matter that the intentions are good. We feel it like a gut punch.

On the other hand, I have started thinking that the acts themselves aren’t always so terrible; it’s the way they are reported that makes us gag. In a couple of cases about prom court elections, it seemed like the students sincerely voted for people they genuinely liked, almost without reference to their disability. It's just that the media covered it like it was a charitable act. Still, one or two isolated examples just don’t go far enough when the majority of disabled students are entirely left out of extracurricular activities and social life.

Instead, I would prefer schools to discourage these types of grand, benevolent gestures, and instead take up the long-term and less immediately gratifying job of removing barriers to a full social life for all disabled students.

How? Here are some ideas:

1. Schools should support a wider variety of extracurricular activities, besides the prom and the the most popular sports programs. "Schools should support" means school district taxpayers should demand and agree to pay for more diverse, robust social options that appeal to all kinds of students, including those with disabilities.

2. Schools should create clubs and organizations that are associated with the top sports programs, but serve peripheral support functions and can accommodate non-athletic participants. It's unrealistic to think that chess club, theater companies, and community service groups are ever going to be as popular as football and basketball, so let's create and recognize some real support roles that disabled students ... and other non-athletic students … can play.

3. Make it absolutely clear that all students … including those who don't have dates and just want to go and have fun … are welcomed to attend all of the proms, formals, and other social events. The long term goal here might be to permanently de-emphasize the "coupling up" aspect. Also, it would help to downplay the most expensive aspects, like tuxes, gowns, and limos. Don't ban them, but don't glorify them.

4. Instead of charitably giving awards and honors to disabled people who would probably not qualify under ordinary circumstances, create a wider variety of awards and honors that are honest and real, and which disabled students (and others) can more frequently earn without anyone having to make a “special” effort.

One argument against these suggestions might be that they shortchange students on learning valuable lessons about kindness and generosity. For one thing, that's like saying that we need people to be in poverty so that everyone else can learn to be generous. I would also counter that there are much more important lessons to learn about respecting and including all kinds of people and normalizing those values, rather than treating ordinary decency as some kind special gift that privileged people occasionally bestow on those deemed “less fortunate.”

In short, a little less “Make-A-Wish” and a lot more commitment to deep integration and equality. That’s what we should be shooting for. It’s harder to accomplish, but the long term benefits are far greater than the fleeting results of one or two big, short-term gestures per year. And although wholesale culture change sounds like a near-impossible task, these specific steps in that direction are eminently achievable.

We have to insist on it, not just for our disabled students, but for all of them.

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Monday, October 12, 2015

Weekly Reading List

Illustration of multicolored stack of books
There’s good stuff to read every week …

Jon Stone, The Independent - October 6, 2015

Employment is a fairly simple issue for disabled people. Most of us want good, well-paying jobs, but way too many of us aren't gainfully employed at all. There are both internal factors and external factors for this. In the disability community, we usually focus more on the external factors, like discrimination.

Benefits are important to disabled people, too. When we need them, we really need them, and it can be galling when we have to defend that need in the face of both specific skepticism and anti-benefits / austerity ideology.

The real nightmare is when people like Iain Duncan Smith try to use our desire for employment as a justification for cutting and narrowing benefits. We are told that the benefits system keeps us under-employed, and we know that in a sense, this is true. The difference is that we recognize it as the structural problems of an outdated system, while politicians ... usually conservative ones ... see it as a moral issue of benefits bankrolling laziness and complacency. Yet they are starting to learn to speak our rhetoric, suggesting that tightening and cutting benefits will somehow, magically, liberate us to achieve our employment dreams.

Meryl Gordon, New York Times - October 6, 2015

I never idolized the Kennedys, but I don't take any sort of pleasure in finding out more bad things about the family. It makes me kind of uneasy to think that people will read this as simply more fodder for political partisans to prove that the Kennedys were horrible. One reason I do want to read this book about Rosemary is that I'm curious whether what happened to her was worse because she was a Kennedy, or whether her experiences were actually kind of typical for mentally or intellectually impaired people of her time. My guess is that her life was pretty typical, but made somewhat worse by Joseph Kennedy's ambition and patriarchal arrogance.

Karin Hitselberger, Claiming Crip - October 6, 2015

This is a heartbreaking account of bullying, and it raises a question I have thought about for a long time. How much disability-related bullying is really about disability, and how much is disability just another of many meaningless excuses for bullying? My guess is that bullies are gonna bully. If there's no disability, it'll be something else ... like the color and cut of a dress. The reason this matters is that it calls into question how useful increasing "disability awareness" really is. I can easily imagine high school students who would never make fun of a fellow student's wheelchair, but see no contradiction in mercilessly teasing the same student's hair, shoes, or accent. Kids and teens are very good at missing the point.

Disabilitybusters - October 9, 2015

I am generally on board with “disability awareness” skepticism (see above). I also prefer discussing policy more than the human relations stuff. However, while I agree with what’s in this article, the way the way the awareness vs. issues conflict is framed here a little too stark. Sometimes, “awareness” does fool us into thinking we are doing something, while it distracts us from dealing with more “substantive” disability-related problems. I don’t think it’s usually a deliberate dodge though, and understanding something about the disability experience can help keep policy discussions on track.

Steve Silberman, BBC Future - October 6, 2015

There can't be enough articles, interviews, and reviews of Steve Silberman's book about neurodiversity and the massive mischaracterization of autism.

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Sunday, October 11, 2015

Weekly Wrap-Up

Picture of a monthly calendar page

Last week’s posts at Disability Thinking:

Monday, October 5

Tuesday, October 6

Thursday, October 8

Friday, October 9

Saturday, October 10

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Saturday, October 10, 2015

Mapathon Update

Amber tinted glass sign with wheelchair symbol and the word "Accessibility"
September 26 - December 31, 2015

As posted before, I am participating in a team effort to post 200 new accessibility reviews of places throughout the United States, using AXS Map, between now and the end of the year. So far I have done four reviews of businesses in my hometown


So far I have only reviewed places I was going to anyway, and so far, the places are mostly accessible. That's one possible problem with this kind of accessibility mapping campaign. If you're disabled, and you only review places you frequent, you're likely to miss places that have accessibility problems. Also, I don't go to very many places as it is, not because of barriers, but because I'm kind of a stay-at-home sort of person.

Still, I am committed. In the next couple of weeks, I am going to try to visit and review at least one place each day. I'm also going to set aside at least an afternoon or two to visit my city's older downtown area, where I know there are shops and restaurants that have spotty accessibility.

I can't stress enough how important it is for those of us who care about accessibility to contribute to projects like this. Putting site reviews on Internet-based maps is the best way I can think of to cover a lot of places and make the information easily accessible to people with disabilities and their families. And once the majority of businesses in a town or city are rated, the business community will start to take notice and want to get better ratings. That's the idea anyway.

Please join me!

1. Go to AXS Map and set up a free account.

2. Download the free AXS Map App to your mobile device if you have one.

3. Review the places you visit regularly.

4. Link your reviews to the Celebrate Access Equality 2015 Mapathon.

5. Make a day of it and target key business districts where you live.

6. Post your reviews to your blogs and social media.

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Friday, October 9, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
Welcome back to the Disability Blogger Link-Up! Share a disability-related blog post or article here, any time between Friday, October 9 and Midnight Sunday, October 11, 2015. And of course, read what others have posted. 

To make the links easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the address of the item you are posting. So: 

Name = Title of your article. 
Your URL = Link to your article. 

Then click the "Enter" button. That's it! 

Go ahead and post, read, and enjoy! This Link-Up will close at Midnight Eastern on Sunday. The next  Disability Blogger Link-Up will start Friday, October 23, 2015.

Thursday, October 8, 2015

Grace Period

Two three-dimensional stick figures, one with an empty word balloon the other with a question mark
How much time do you allow for people to catch up with new developments in disability language and ideas?

When I started out working in Independent Living, "crippled" was inexcusably insulting, unless used in a joking, in-group way among disabled people. "Handicapped" was just barely out date, but still very common; our general approach was to correct it kindly and patiently. "Person with a disability" was the ideal, and using it marked you as someone with a strong, progressive disability consciousness.

Today, 25 or so years later, hearing "handicapped" hurts to hear, and marks a person as hopelessly out of date. "Person with a disability" is in rough parity with "disabled person," but terminology is evolving fast towards "disabled person." Person First Language is in roughly the same position today that "handicapped" was 25 years ago. Some people honestly see it as an improvement over what came before, while others have left it behind. Advocates for Identity First Language give strong, passionate arguments in its favor, but say that they respect disabled people who still prefer to call themselves "person with a disability."

I see the same kind thing in disability-related thinking and practices. 25 years ago, most everyone agreed that large institutions were terrible for disabled people, and all but a few forward-thinkers viewed group homes as a progressive alternative. Sheltered workshops were generally viewed positively in the wider community, and were only beginning to be seriously questioned.

Today, I would view anyone who thinks group homes and sheltered workshops are awesome as well behind the curve, though I'm not sure yet that we are at the place where belief in these models can be fairly called shameful. I guess it depends on who I am talking to ... a random person in the community or someone familiar with disability issues.

On the other hand, people still talk about accessibility standards and the ADA like they are new requirements, even though the ADA just turned 25 and the first accessibility standards were published in the late '60s. And "inclusion" in schools, or, as we used to call it, "mainstreaming," is still often debated as if we are still pondering a new approach, when it's been the standard goal for education since the early to mid '80s ... at least on paper. To me, it's long past time for literally everyone to be on board with these things.

I think 25 years makes a pretty good grace period. If your thinking and practices around disability are older than that, I don't have much sympathy. But if you're still a little behind by, say, 10 years, we can talk.

How long is your grace period for social change?

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Tuesday, October 6, 2015

The Way Of The Advocate Is Hard

Green highlighter pen highlighting the word Advocacy
One of the reasons why strong, vocal disability advocates get more negative than positive response in social media ... such as when they criticize Inspiration Porn ... is that most people find strong, critical, negative opinions on any subject to be unattractive. Advocates can shape attitudes over time. They can bring about important policy change. A significant minority of people actually admire advocates and love what they do. But on just about any issue you can name, advocates and social critics who speak their minds are rarely liked.

This phenomenon is a bit more intense and hypocritical in the disability sphere because of the unique characteristics of ableism. But I don't think the backlash is much worse or all that different from the responses people get when they express challenging opinions on race, gender, politics, religion, economics, etc.

So what?

Well, it suggests that if you're going to be an advocate, especially in the realm of disability, don't be surprised if you catch a lot of crap for it. If you're very good at it, and articulate, you might gain a small but loyal fan base within the activist community. If you're smart about strategy and don't take things too personally, you can succeed in what you set out to do. But if you venture out into the wider public discourse, don't expect to be either liked or admired. Change is uncomfortable. Most people don't like to be uncomfortable. And people absolutely hate it when the people they think they are helping are the ones making them feel uncomfortable.

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Monday, October 5, 2015

Weekly Reading List

Picture of a multicolored stack of books
For this week’s list, I picked 5 excellent pieces that I would describe as “Disability 101.” They don’t break any new ground or dig deep into disability culture, but together they would make a good introduction to modern disability life and thinking.

Elizabeth Cooney, The Boston Globe - October 5, 2015

This article covers just about all of the main concepts required to understand what “accessibility” is really about. It’s not just a bunch of obscure, nit-picky regulations. Each rule and each measurement standard relates directly to how disabled people live, and have a direct affect on whether or not we can get around in our own neighborhoods, towns, and cities.

Karin Hitselberger, Claiming Crip - October 1, 2015

There are lots of disability etiquette lists out there, covering pretty much the same things. What makes this one notable is that Karin offers “dos” for each one of her “don’ts.” I think that’s something we forget to do much too often.

Emily Ladau, The Disability Dialog - October 2, 2015

Emily does two very important things here. She raises the very difficult and extremely important issue of what happens to disabled people in personal and public emergencies. In doing so, she also underscores the fact that disabled people, ourselves, are equally responsible for planning emergency response, or failing to do so.

Andrew English, The Telegraph - October 2, 2015

At first I didn’t quite understand what this woman does, but when I finally got it, I was fascinated. It seems there’s a program in the UK that gives disabled people some kind of allowance specifically for transportation. You can use the money to pay bus fares, subway rides, or a driver. Or, you can use the funds to help buy or modify a car to make it drivable. Obviously, the amount of the allowance is crucial, and I wonder if you can choose to save up the allowance for a bigger purchase. But the model sounds great because each person can decide how to use the funds in a way that works best for them.

Alexander Presthus, CP Experience - September 30, 2015

Boy, did I nod my head a lot while reading this! Even though Alex focuses on Cerebral Palsy, what he says here I think is totally valid for youth with all kinds of disabilities. Parents of disabled kids should read this blog, too.

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Sunday, October 4, 2015

Weekly Wrap-Up

Closeup illustration of a monthly calendar page
Last week in Disability Thinking ...

Monday, September 28
Wednesday, September 30
Thursday, October 1
Friday, October 2
Saturday, October 3

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Saturday, October 3, 2015

Evolution

Closeup photo of the word "evolution" in a dictionary
I’m working on a bunch of things to post about for the next couple of weeks. In the meantime, here’s a terrific quote from Ari Ne’eman’s two-part article on the National Council on Disability’s research on Sheltered Workshops:
"Disability policy is full of examples of yesterday’s innovation becoming today’s indignation. As my friend Anne Donnellan once put it, “The mark of anyone good in disability service-provision is that they’re at least a little bit ashamed of what they were doing twenty years ago.” The opposite of this is also true – many of the worst disability services come from becoming too attached to program models that were considered state of the art in previous decades." -- Ari Ne’eman: (Almost) Everything You Need to Know About Sheltered Workshops: [Part 1] [Part 2]
I thought of this earlier this week during a great Twitter conversation I had about “Person First Language” and “Identity First Language” with @greggberatan, @erabrand, @mikeemort and a few others. I switched from PFL to IFL a couple of years ago. Until that time, my understanding was that Person First Language was THE progressive term to use, completely consistent with the Social Model of disability. Anything else, I assumed, was ableist, and any disabled person using IDL had to be misinformed.

As it turned out, I was the one who was misinformed. No, that’s not quite right. I was informed … 25 years ago. And while I am not “ashamed” of having used and encouraged Person First Language, I have no trouble now saying that my thinking has evolved, and so has the thinking of many smart, savvy, self-aware people in the disability community. People who prefer using Identity First Language know what they are doing.

Ideas about disability evolve. Cynical ableists aside, what we did before was the best we could figure out at that time. "People with disabilities" was a huge improvement over "handicapped," and we should have no regrets. However, we do need to take care not to be arrogant about our beliefs, or assume we are always the cuttting-edge thinkers, and remember that sometimes, people who disagree with us may have the better idea.

Note:

I won't try to explain the pros and cons of the two "identification models." I am not very good at parsing out the different justifications for each one. I will say that once I bought into Identity First Language, I did so enthusiastically, mainly because it's easier to say and write. "I'm disabled" just sounds smoother and less cumbersome than "I am a person with a disability."

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