Monday, May 25, 2015

Memorial Day

Black and white photo of three men with disabilities, two in wheelchairs two missing arms,
National Public Radio
1998

Memorial Day seems like a good occasion to think about the role of disabled military veterans not only in serving our country in war, but also in shaping the history of disability.

The First World War was one of the first wars to produce massive numbers of severely wounded soldiers who did not die soon afterwards. This coincided with other aspects of modernity, such as progressivism, which legitimized government action to address social problems, the professionalization of medicine and other related fields, which started to standardize care and weed out quackery, and advances in consumer technology, which enabled industry to meet newly identified needs more quickly than at any other time in history.

As this part of the NPR series points out, disabled veterans were still treated with condescension and pity, but at the time that was an improvement over how most disabled people had been perceived. As people started to think better of disabled veterans, it must have helped get people used to the idea that disability itself wasn’t the personal tragedy or societal threat it once seemed to be.

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Sunday, May 24, 2015

Weekly Reading List

Illustration of a stack of books
This is a collection of disability-related articles and blog posts I read last week, but didn’t have a chance to link to or discuss. It’s an opportunity to catch up with some of the good stuff that’s out there, but doesn’t fit neatly into the week's “big stories.”

Here is this week’s reading list:

TEDxSydney - May 21, 2015

Melissa Davey, The Guardian - May 22, 2015

To be honest, I’m not entirely sure what happened here, which is why I haven’t written about it until now. From what I can tell, TEDxSydney, one of the loose affiliates of the TED Conference organization, decided to start a rather vague “media campaign” to honor the late Stella Young, the disability activist and all-around awesome woman who came to wider world attention for her TEDxSydney presentation a couple of years ago. It seems like disability activists, including people who loved Stella and her militancy, were upset by a combination of things, including a suggested starter question meant to help non-disabled people break the ice in starting discussions with disabled people, presumably to foster dialog and understanding or something. The question was something like, “Tell me about your disability …”

That question, and the whole tenor of the project, seemed very airy and abstract. Now Stella was an intellectual, so she was well acquainted with philosophies and social theories, but she was also very down-to-earth, businesslike, and very clear that most of disabled peoples’ problems stem from very real, concrete barriers in architecture and policies, not just “attitudes.” I think that’s why so many people got upset. It’s good to see TEDx responding, though the tone of their response seems equally guarded and bureaucratic to me, again lacking any solid point of view that can be pinned down. To be fair, these problems are perhaps to be expected from a TED initiative. TED talks are occasionally amazing, but just as often they are smug, self-congratulatory, and pandering to a certain sort of privileged, progressive, but apolitical audience that likes to feel like having a deep, meaningful conversation is the same thing as doing something. I’m a bit like that myself, but I see it as one of my weaknesses, not a strength.

Smart Ass Cripple - May 22, 2015

Mike Ervin’s take on “overcoming.” His Smart Ass Cripple blog is always worth reading.

s.e. smith, this ain’t liven’ - May 22, 2015

An excellent run-down of the most common ways disability is used, and abused, in literature and popular culture. s.e. smith suggests maybe writers might try a bit more creativity.

Nicole Cobler, San Antonio Express-News - May 19, 2015

Apart from the fact that home care workers are, usually, woefully underpaid, it’s good to see the people they work for fighting for them to be paid more. The problem is that home care users don’t have any real say in wages. It’s usually state Medicaid programs that pay. So the best home care users can do is organize, lobby, and protest their legislatures, as they did this week in Texas.

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Weekly Wrap-Up

Illustration of a calendar with a red pin in it
Monday, May 18, 2015
Tuesday, May 19, 2015
Wednesday, May 20, 2015
Thursday, May 21, 2015
Friday, May 22, 2015
Saturday, May 23, 2015
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Saturday, May 23, 2015

Furiosa



I haven’t seen a movie in the theater in years, but this evening I’ll be at my local mall cinema seeing Mad Max, Fury Road. I’m going because I read this Tumblr post about the film, (via the Disability Visibility Project), and its amputee main character, Imperator Furiosa (Charlize Theron). We’ll see how I feel afterwards, but in movies at least, I get a get stronger positive disability vibes when disability isn’t the main topic, but rather a visible but natural-feeling aspect of complex characters. I prefer “show, don’t tell," and it sounds like Fury Road does just that, and nothing else regarding Furiosa’s missing arm.

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Friday, May 22, 2015

"Geeky Gimp" Panel - Disability In Star Trek



I had a great time last night talking with some fellow disabled geeks about disability in Star Trek, hosted by Erin of The Geeky Gimp. We covered a lot of ground, and basically agreed that disability in Trek is a mixed bag of good intentions, interesting ideas, and sometimes sloppy thinking about disability issues. Also, using Google Hangouts got me thinking about changing how I do my Disability.TV Podcast. Maybe a video chat is a better way to go. Just thinking ...

If you do Twitter, you should follow the other fantastic panelists:

Alice Wong: @SFdirewolf
Zack Kline: @zkline
Day Al-Mohamed: @DalAlmohamed
Host Erin H.: @geekygimp

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Airline Incident Followup

Autistic Self Advocacy Network - May 21, 2015

Last week’s discussion about the autistic teenager and her family being kicked off an airliner frustrated me on two levels.

First there were the commenters who seemed to mold and manipulate this particular  incident into their preconceived ideas about overly-demanding special needs parents inconveniencing everyone else in pursuit of unrealistic accommodations for an annoying child. The fact that the flight attendants ended up providing what the autistic teen wanted in the first place, which means they could have done it right away without argument, didn’t matter to people intent on making the obvious point that an airline can’t meet every conceivable need.

Second, nobody seemed to share my concern about the teenager’s mother, (who I think was right in her advocacy), using negative stereotypes of autism to try to get what she was after. On reflection, I think she may not have been as insulting and harmful as it sounded.

Throughout the dialog … in news articles, blogs, Twitter, and Facebook … I kept wondering what the Autistic Self Advocacy Network would think. I am pleased to see that once again, ASAN has presented an issue in a strongly worded but well-reasoned press release centered on a useful response … asking the Department of Transportation for clarification of the applicable law, the Air Carrier Access Act. This is more than expressing outrage. It might actually help.

It can’t be said enough. The Autistic Self Advocacy Network is the most articulate, effective, and authentic voice for autistic people in the country, possibly the world. If you have any interest in autism from any angle and aren’t familiar with ASAN’s work, you are missing out.

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Thursday, May 21, 2015

Throwback Thursday

Illustration of the time machine from the film "Time Machine".
Two years ago in Disability Thinking: About Autism and “Labeling"

I was interested to read something I wrote touching on autism back when I had just started blogging and reading blogs about disability. This was before I had much exposure to the “neurodiversity” view of autism. I don’t think I wrote anything terribly ignorant or shameful.

In any case, I was really talking about labeling, and my feelings on that are pretty much the same today as they were two years ago. One of the articles I linked to in my last Weekly Reading List was about labeling, and I liked it because it said some of the same things I was saying in this blog post.

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Wednesday, May 20, 2015

Dueling Accessibility Stories

Diagram showing accessibility measurements of wheelchair user reach ranges at sink
Matt McKinney, Minneapolis Star Tribune - May 18, 2015

Kate Ross, Minneapolis Star Tribune - May 19, 2015

I applaud the Minneapolis Star Tribune for giving space to “both” sides of an accessibility debate.

Accessibility diagram showing wheelchair turning radiiIt does seem like objectively, what’s going on with this “non-profit” is pretty shady … suing businesses for ADA violations as their main source of funding. I can imagine an organization doing something similar in a more productive way. If they chose their targets with more care, restricted them to larger, better resourced businesses, or offered settlements involving ADA compliance rather than just cash payments. Apart from the possibility of being a straight-up ripoff, it seems like the people running this organization have the kind of tunnel vision you sometimes see in disability activists, where they literally don’t perceive how the general public views the issue. It’s one thing to decide you don’t care, and pursue what’s right no matter the consequences. It’s another thing entirely to assume everyone will understand, because how could they not?

On the other hand, it’s worth wondering whether the business owners profiled in the first article are truly innocent victims, whether they are woefully ignorant of the ADA, or maybe just don’t give a damn about accessibility. Is this guy closing his bowling alley because he can’t afford to run it anymore due to the lawsuit, or is it out of spite? Maybe he was going to close it anyway, and he’s using the occasion to give a public “f-you” to people he sees as whiny busybodies.

Diagrams showing restroom accessibility designs
The second article, published the next day, reminds readers that accessibility is a real issue, and that continued failure to make a business accessible 25 years after the law passed is a violation of the law. We may question the motives of the plaintiffs, but that has nothing to do with the guilt or innocence of the defendants.

I also found it interesting that the second article is by a young woman who had a short-term disability. In fact, her arguments are the usual, standard, pro-accessibilty material. They read like she has just done some research on a new subject for her … which seems to be the case exactly. Her editorial also brought up those old frustrations a lot of disabled people feel when a “newbie” describes their shock to discover that accessibility is still a problem today. Sometimes it seems like we disabled can repeat our complaints forever, but it doesn’t sink in until a non-disabled, temporarily disabled, or newly disabled person “discovers” the issue. In this case, that’s okay, because this article coming a day after the first serves a valuable purpose, in just the right way.
Diagram showing side reach ranges for wheelchair user

As far as I’m concerned, this is the issue. The Americans with Disabilities Act has been federal law for almost 25 years. I can’t imagine a single business, program, facility, or government entity that can legitimately excuse lack of accessibility by claiming ignorance. All of the facts and information you need to comply are freely available on the Internet. If you care enough to spend an hour browsing, you can at least figure out what you need to do. It takes a little more thought and consultation to decide how to proceed, but that’s pretty easy, too.

Suing businesses for personal gain or punitive fines isn’t the best way to do advocacy, in my opinion. On the other hand, I don’t feel sorry for any of the businesses that find themselves targeted, if they are, in fact, not accessible. There’s been plenty of time and opportunity do fix this. Just get on with it.

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Tuesday, May 19, 2015

“Inspiration” Without The “Porn"

Photo taken from behind a person filming a scene with a smart-phone.
There was quite a lot of discussion last week among disability bloggers and Facebookers about a viral video showing a restaurant employee “feeding” a physically disabled customer.

While newspapers and TV stations all over North America reported it as an unambiguous “good news” story, most of the comments from disabled people ranged from head-shaking to outrage. On one level, it was a simple reaction to standard “Inspiration Porn.” Inspiration Porn is that thing where someone writes a news story or posts an “inspiring” photo or video involving a disabled person, something clearly meant to make us go, “Awwww,” and appreciate bravery, persistence, or kindness, preferably without asking awkward questions about context.

On another level, this particular video raised very specific questions about privacy and objectification. Who is this disabled woman? What is her name? Did she know she was being filmed? If she had known, would she have been okay with the video being publicly posted and then going viral? Was she happy with how the employee was helping her, or did she have some other solution in mind? And, who is the customer filming the scene? Did he or she think for a moment about how the disabled woman might feel? Did they introduce themselves to her and ask her permission to film her and present this bit of her life in order to “inspire” millions of strangers? Is it possible a severely disabled person might have mixed feelings about being looked at in this way?

Of course, these questions provoked their own perplexed, angry responses from people who apparently felt cranky disability activists were raining on a parade they had been enjoying immensely. Why do people have to put a sinister spin on a rare “good news” story? Why are disabled people so angry about stuff like this? Aren’t they always asking retail staff to help them? The world is such a nasty place, and this is a nice story. Lighten up!

I have been thinking for awhile that we need to come up with a way to allow some cultural space for people who really love and crave “inspiration”, while keeping it from becoming “Inspiration Porn” that insults disabled people and sends ableist messages about disability.

Maybe we should make a checklist for would-be filmers, meme-makers, and reporters thinking about using disabled people as their subjects:

- Is the disabled person a willing participant in the story, video, or photo?

- Does the disabled person have a voice in the finished product … something relevant to say, in their own words?

- Is the disabled person credited by name? Does the piece include include any contact and background information about the disabled person, if they want it included?

- Does the finished product include enough accurate information on the situation and disability to put the scene or incident in context?

- Who is the “hero” of the scene? Are they doing something truly remarkable, or interesting only compared to very low, possibly insulting expectations?

- If you were the disabled person in the finished product, how would you feel about it?

- Consider how the disabled person might actually feel, not how you think they should feel.

If you look at this list and think, “Who’s going to be comfortable with all that?”, then that should tell you something about Inspiration Porn. If what you’re doing can’t pass these simple tests, then maybe the world doesn’t need your inspiring creation right now.

On the other hand, I think this list might be reasonable enough to allow a few disability-related photo memes, videos, and news stories of the “inspirational” variety to satisfy peoples’ apparent craving for such things. I think it’s worth noting, too, that some disabled people feel good about inspiring others, and actually spend time and creativity doing so through videos, photo memes, blog posts, and the like.

The key difference is that those are messages from disabled people, in which disabled people are active participants with human voices and points of view, not nameless objects on which others project their feelings.

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Monday, May 18, 2015

Disability.TV Ep. 23 - Downton Abbey

Disability.TV logo on left, Downton Abbey poster on right


I am joined by my favorite podcasters, Kelly Anneken and Tom Schneider of the "Up Yours, Downstairs Podcast," to discuss disability on the hit ITV / PBS Edwardian Era drama, "Downton Abbey.”

Edwardian Era (Wikipedia)
World War I (Wikipedia)

What's The Takeaway?

The Guardian - May 18, 2015

These kinds of stories are horrifying, but I also wonder what  causal readers and news-watchers think about them. It makes a difference how you interpret the problem:

- Do disabled people need more protection, oversight, and supervision?

- Is there something about care services and institutions that encourages abuse?

- Should families of disabled children be terrified by the “mainstream” world?

- Is it that people don’t really see disabled people as human beings?

- How many disabled people lack the capacity to stop or avoid abuse, and how many mainly lack the training and socialization to do so?

There might be some truth to all of these, but some conclusions are helpful, while others tend to lead to more problems, not fewer.

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Addendum:

I’m very glad to see that The Guardian’s Frances Ryan has followed up the news story with an editorial that provides a framework for thinking about this. Note in particular her reluctance to dwell too much on the idea of disabled people being inherently “vulnerable.” What still seems to be missing is a broader discussion of abuse that includes non-sexual abuse. Sexual abuse is particularly heinous, but many of the same interpersonal dynamics and lack of basic supports feed into other kinds of physical and emotional abuse, too.

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Sunday, May 17, 2015

Weekly Reading List

Colorful cartoon picture of a tall stack of books
This is a collection of disability-related articles and blog posts I read last week, but didn’t have a chance to link to or discuss. It’s an opportunity to catch up with some of the good stuff that’s out there, but doesn’t fit neatly into whatever the “big stories” are each week.

Here is this week’s reading list:

Tonia Says - May 6, 2015

It’s always good to be reminded by an actual disabled person why we use the words we do to describe ourselves. There are all kinds of intellectual arguments about this, but we feel personally about it, too. It’s not all a political stance.
Mama Fry, Scary Mommy (date unknown)

Another angle on labeling, this time from a parent of a disabled child. She gets at the issue that bothers me about labeling, which is a seeming confusion between the label … the word … and the thing itself. As if the label makes the thing real, when really the label is just a way to describe something that already exists and is best recognized.

Laurie Arnold, The Mighty - May 14, 2015

This is kind of a blunt, but also refreshing description of how it feels to be gawked at. Or, in this case, how it feels for parents to see their disabled kids gawked at.

The Squeaky Wheelchair - May 14, 2015

This is about college, obviously, but also a reminder of what it takes for people with significant physical disabilities to function independently. It’s a lot about management skills.

Diane Coleman, Syracuse.com - May 11, 2015

The core disability rights argument against legalized assisted suicide. It’s not about religion or morality, it’s entirely practical … about bad policy more than bad behavior.

Conor Friendersdorf, The Atlantic - May 15, 2015

The former Executive Director in me cringed a bit while reading about a mental health counselor’s somewhat unauthorized practices, though they seem to be right.

German Lopez, Vox.com - May 16, 2015

I appreciated reading the “other side” of this issue … the medical reasons why higher-octane painkillers can bad for you medically, not just morally or legally. Still, even those arguments seemed a bit weak to me, kind of circumstantial. The meds themselves seem to be no worse than any other, as long as they are used responsibly. And pain management is a big, big issue for many disabled people.

The Onion - May 15, 2015

“It’s important to remember that in those days, the need to rely on eight mechanical spider legs was perceived as a weakness,” said Elmore, citing a lack of education about the issue and the fact that most Americans simply chose not to talk about it."

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