Monday, June 1, 2015

Music For A Monday Evening

Somehow, the day got away from me, and the plans I had to post something of substance fell through. Maybe tomorrow. Also, look for a new episode of the Disability.TV Podcast on Wednesday. My guest will be Christina Stephens, a.k.a. AmputeeOT, who spoke with me about last fall’s Fox TV show, Red Band Society.

Meanwhile, check out this Beatles video. I watched the Rock and Roll Hall of Fame Induction Ceremony last night, and one of the highlights was inductee Ringo Starr performing “Boys” with fellow inductees, Green Day. It was pretty great.

Sunday, May 31, 2015

Weekly Reading List

Illustration of a stack of multicolored books
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 list:

Patrick Sawer, The Telegraph - May 30, 2015

The article itself is a mess, (lots of bad disability terminology), but it is encouraging to see Stephen Hawking connect the dots between the supports he has enjoyed that helped him succeed, and the possible loss of support for disabled students today, due to expected budget cuts. People like to talk about what an amazing man he is to be as vital as he is with advanced ALS. By any measure he does have an extraordinary mind. But an important key to Hawking’s success is that he has had supportive help, funding, and technology that a lot of people find it hard or impossible to access. And something as simple as an election result can make it even harder.

Camilla Turner, The Telegraph - May 28, 2015

I doubt very much that the BBC will hire truly unqualified weather presenters any time soon, disability or no. As they told the Telegraph’s reporter, they are offering a training opportunity only, not a guaranteed job. The problem is that the network specified it’s for disabled people, and that they are offering the training as part of an organized effort to increase the number of disabled people on BBC TV shows. A few thoughts here:

- It would be more helpful to offer training and internships throughout the BBC’s national and regional news operations, both in front of the camera and behind, not just the tiny niche portion of being a “weather presenter.” There can’t be more than a few dozen in the whole of the United Kingdom.

- It might work better and be less controversial for the BBC to fund disabled student recruitment at UK university media departments.

- The tone of the ad is so flippant, it’s as if they are offering free carnival tickets to disabled people, not career training. By making it sound like a job people can just try out on a lark, it devalues the whole thing, like it’s one of those foolproof “work from home” schemes.

I am beginning to realize that straightforward ableism is often less painful to see than well-meaning but ham-fisted do-gooderism by non-disabled people. It makes one wonder if they really care whether their efforts actually work or not.

Haddayr Copley-Woods, Fiction, Essays, Geekery - May 29, 2015

This is a very good first-person account that tries to explain why disabled people sometimes get angry at people who are trying to be nice to us. For me, it’s all about tone of voice. I don’t think I am every really bothered by unsolicited, unwanted offers of help. It only becomes a “microaggression” when it becomes aggressive, defensive, or condescending.

Patrick Abboud, The Feed - May 27, 2015

It’s interesting to see that in Australia, if this article describes the situation accurately, the big barrier to getting out of nursing homes is lack of “affordable accessible housing.” That is often the problem here in the U.S., too, but here I think it’s even more of a problem getting personal care, reliably and in the right quantity. Nevertheless, this article describes very well just how wrong it is for disabled people to be forced by external circumstances … not by their disabilities … to live in nursing homes. I only have one quibble. The article keeps saying it’s terrible to make young people “live like an old person.” The thing is, it’s just as bad to make old people live like an old person, if that means shipping them off to a nursing home.

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Weekly Wrap-Up

Illustration of a calendar with a red pin in it
Monday, May 25, 2015
Tuesday, May 26, 2015
Wednesday, May 27, 2015
Thursday, May 28, 2015
Friday, May 29, 2015
Saturday, May 30, 2015
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Saturday, May 30, 2015

I Almost Overlooked A Worthy Petition

"Make Drew Feel Incredible (because he is)."
"Everyone deserves the opportunity to feel special."
These are the first two lines of text I read of an email from Change.org. My first though was, “Oh, no! Another non-disabled brother, sister, or parent asking people to please, make a disabled kid’s day by helping them rack up a million “Likes”, or voting for them to win some “special hero" contest they’re about as likely to win as being struck by lightning. I see stuff like this a lot on Facebook, and occasionally in emails, too. They make me feel rotten because the intent behind them is obviously good, but the neediness implied underneath is nauseating.

Then, for some reason, instead of trashing the email, I read it more closely. First I noticed a sub-headline I’d missed because the text was a sort of gray color instead of black. It reads:
"Petitioning Warby Parker"
Now, because I listen to a few hipster podcasts, I know that Warby Parker is an Internet-based mail-order company that sells glasses. Apparently, you fill out a style preference questionnaire online and they send you several pairs of actual glasses of different styles for you to try on at home. You keep the one you like and send the others back. And of course, they’re all meant to be absolutely in style, especially, I’m guessing, for millennials and hipsters of all ages.

Icon drawing of a petitionSo, now I’m intrigued.

I read on, and discover that this is a petition to get Warby Parker to offer some more in-style frames that fit some of the unique face-nose-ear shapes and sizes common to people with Down Syndrome. The creator of the campaign, Bre Whitehead, appears to be the sister of a young man with Down Syndrome who she says, "has a killer fashion sense, and likes to be on trend.” He can’t get cool looking glasses though because none of those designs as currently offered work for his smallish ears and nose bridge.

Having a body that doesn’t match up well with clothes I’d like to wear is familiar to me. So, I’m sold. This is brilliant and amazing and here is why:

- If the petition succeeds, this will make Andrew (the brother, not me) feel special, but in a way that is very specific to his personality, not in some generic or essentially meaningless way, like a million “Likes” or a pizza party or something.

- The petition also calls attention to a very specific, probably not well-known, but really meaningful barrier to the general happiness and freedom of expression of people with a certain kind of disability. Assuming what the sister is saying is more or less true, an entire group of people being stuck with ugly specs is a big deal, especially when they, especially benefit from standing out visually in unique and expressive ways.

- Because we’re talking about cool glasses and not food, clothing, shelter, or healthcare, there’s probably nobody else even thinking about addressing this issue.

- The petition targets a company that can do something about it … if it’s possible to do so … and one that professes to exist partly to be altruistic.

- Andrew will feel special, and so will other people with Down Syndrome, because they will have more choices than before. Choice is something a lot of disabled people don’t have, because we need a thing, but they only make one kind of that thing that will work for us, if we are lucky.

- Finally, I love that Ms. Whitehead isn’t asking for something just for her brother. She’s linking what he needs with what a lot of other people like him probably need (and want!), and aiming for a systemic solution, not an individual gesture of charity.

The reason I am making such a big deal out of this is that because i first mistook this email for a syrupy disability beg, and then realized it was sort of the opposite, it helped me think about the difference between the two approaches people take towards “helping” disabled people. From a distance, people might not see the difference. But it’s night and day to me.

I’ve signed the petition, and so should you.

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Friday, May 29, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
Right! Is everyone ready for another Disability Blogger Link-Up?

Use the blanks below to post a blog post or article on something related to disability … something you want to share.

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

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

Note: If your post doesn't appear immediately, try "refreshing" the page a few times. Sometimes it takes a little while to show up. Also, feel free to post more than one item. Finally, you might want to add a comment at the bottom of this post, to identify yourself or add an explanation or comment about the items you are posting.

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next Link-Up Friday, June 12, 2015.

Thursday, May 28, 2015

Disability In “Mad Max: Fury Road"

Woman with close-cropped hair with both hands in the air, her left arm a mechanical-looking prosthetic
After reading about it and resolving to see it for real, I am finally ready to blog about Mad Max: Fury Road, which I saw in the theater last Saturday. Instead of writing a long, comprehensive think piece about disability in the film, I want to highlight two disability-related points that moved me the most — a theme, and a moment.

Genetic Mutation and the Quest for Purity

Man with a deformed, skeletal face, pale white, with bushy blonde hair, mouth and nose covered by a breathing device decorated with large teeth
Face of a male young person with pale white face, dark-rimmed eyes, and bald.The main villain, Immortan Joe, and his hordes of pale, spindly "War Boys" all appear to have genetic mutations, presumably the result of nuclear fallout and other unspecified environmental fouling. In a sense, they are all disabled. And apart from the typical quest for uber-patriarchial power, Joe and his clan’s motivating goal seems to be the herding and rough nurturing of “pure” bloodlines … that is, parentages that will produce “normal” children. In pursuit of this otherwise benign goal, they will resort to just about any atrocity, including the kidnapping, slavery, and forced breeding of women who appear to have “clean" DNA. In a sense, Joe and his gang are self-hating disabled people who will do anything to reach an imagined cure of perfect genetics. It’s a lot for disabled people to think about.

Discarding The Arm

Woman with close-cropped hair sitting on top of a prone man, swinging a half-arm stump as if to hit him, a gun held in her other hand
As has been fully discussed elsewhere, our hero ... who is unquestionably Imperator Furiosa, (Charlize Theron) and not Mad Max ... is missing half of her left arm, and through most of the film she wears an elaborate and versatile Steampunk-looking prosthetic. There are dozens of ways that this is awesome, especially for amputees who might be watching, but really for anyone with a physical disability. However, my favorite moment about this by far comes at Furiosa’s point of utter despair, when she stalks off by herself across the sand, dropping her extra gear and clothes, shedding her prosthetic arm almost as an afterthought, then kneels and cries out in anguish and frustration.

I am not an amputee. I have never used a prosthetic. But I did wear braces on my legs when I was a child, and I wore a heavy back brace for a year when I was 10. Even when I didn’t exactly hate them, there was something therapeutic about taking them off just to be me and me alone. I interpret this scene as Furiosa stripping herself down to her essential self, without add-ons, shields, or decorations, and that includes showing her naked, uncovered, unhidden stump, or “nubbin” as one blogger called it. “Showing” it isn’t the right word, either. She’s entirely unselfconscious in that moment. She doesn’t care if anyone is looking at her, or her stump. Even though her mood is sad, even despondent, in a way it shows that at least she’s fully at home with herself.

Same woman as in other photos, here from a distance, kneeling in the desert sand, looking up at the sky
Unlike her enemies, who want to negate and change who they are, Furiosa doesn’t care one way or another. Her prosthetic is entirely practical, too. It proves to be endlessly useful to her, but it's obvious she put no effort at all into making it look like a “normal” arm. Plus, she is comfortable enough in her own skin that in her moment of crisis, rather than adding more stuff, more padding to hide and protect herself, instead she strips things away … including her arm … to become more herself ... as if to say, "Here I am."

As usual, I doubt George Miller or Charlize Theron thought these things through explicitly. This isn’t really a movie about genetics, prosthetics, or the social politics of disability. I don’t think it’s even meant to show audiences how capable disabled people can be. But I am pretty sure it is and does all those things anyway, and I enjoyed the hell out of it.

Plus, you know … there’s ‘splosions!

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Throwback Thursday

Illustration of the time machine from the film "Time Machine"
Two years ago in Disability Thinking: What’s The Deal With Kevin?

Kevin from The Office, that is.

Two years later, I think differently about cognitive impairment. I’ve also become a lot more attuned to how TV writers like to use ambiguously cognitively disabled characters, which allow them to poke grade-school-level fun at certain stereotypical tics, looks, and voices, while mostly escaping criticism for outright making fun of disabled people. I still believe the open questions about Kevin reflect similar uncertainty people sometimes have in real life, but I also think it gave the writer’s license to laugh at Kevin, supposedly guilt-free.

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Wednesday, May 27, 2015

Signal Boost: "Our ADA Stories"

Disability Visibility Project: a community project with StoryCorps. “Recording disability history one story at a time.” @DisVisibiliy.

The Disability Visibility Project is partnering with the National Council on Independent Living for a social media campaign called #OurADAStories.

From the announcement by the Disability Visibility Project:
Purpose
To celebrate the rich diversity of the disability community and the impact of the ADA on our everyday lives and activities.
How To Participate
1) Tweet your story! It can be a written message, selfie or a photo of things you see in your community that relates to disability rights. Be sure use the hashtags #OurADAStories and #ADA25 in any tweets! Follow @DisVisibility for updates.
2) Post an image or written message to the Disability Visibility Project’s Facebook group (you have to join first). If you post an image to this group, please include a written description of your image.

The idea is to share your personal thoughts, experiences, and feelings about the Americans with Disabilities Act … in words and / or pictures. How has it affected your life? What are the law’s strengths and weaknesses? How has the ADA made your community better for people with disabilities?

This initiative will run from now until July 26, 2015 … the 25th Anniversary of the Americans with Disabilities Act.

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Tuesday, May 26, 2015

Another TED Idea

Gerard Goggin and Katie Ellis, The Conversation - May 25, 2015


I had a little to say in Sunday's Weekly Reading List, about the TEDxSydney controversy, but mostly I was confused. Thanks the article linked above, I'm a little less confused, and a bit more interested.
"Key to the disappointment and anger felt by many in response to #stellaschallenge is a palpable irony. TEDx Sydney calls for conversations – but doesn’t recognise that there are already many conversations, relationships, and media, attitudinal, and social transformations underway. So, rather than speaking, genuine listening is required – often the hardest thing to do.
"Fabulous as Stella’s TEDx talk is, it’s time to go beyond just resharing it. We need to really listen to it. We must acknowledge and support the many other voices of people with disabilities."
I'm still not feeling the outrage others seem to feel, but I do agree the critics of TED's inital approach have made good points. It's not just the proposed methods, but the goal itself that should be re-thought, with Stella Young's specific points of view in mind.

Here's a thought ...

Why not keep it simple? Just sponsor a series of TEDxDisability conferences, in which all of the speakers are disabled people, representing a wide diversity of race, gender, sexual orientation, nationality, ages, disability types, and above all, diverse perspectives and and philosophies of disability, from the intensely personal to the hard-edged political, and all the tones, styles, and positions in between.

Let's hear from amputee mountain climbers and quadriplegic protestors; little person accessibility campaigners and blind entrepreneurs; youth self-help motivators and middle-aged policy analysts; artists with Down Syndrome and litigators with spinal cord injury; autistic teachers and Deaf rehabilitation counselors; bipolar bloggers and learning disabled journalists. It might even be worthwhile to hear a speaker who thinks "Insipiration Porn" isn't such a terrible thing. As long as all the voices are authenttic disabled voices, there is room for all of us to hear all sorts of ideas.

A new set of TED conferences sounds like more talking, less action, which is one of the problems with the original plan. However, I would argue that giving a high-profile, more or less equal stage to all of the branches and clans of he broader disability community would help us decide what our priorities really are. At the same time, the non-disabled community would learn a lot, just by listenning.

As I said, it's just a thought.

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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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