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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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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Weekly Wrap-Up

Illustration of a calendar with a red pin in it
Monday, May 11, 2015
Tuesday, May 12, 2015
Wednesday, May 13, 2015
Thursday, May 14, 2015
Friday, May 15, 2015
Saturday, May 16, 2015
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Saturday, May 16, 2015

Quote

Blue icon of quotation marks
I’ve been away from Tumblr too long.

When I started disability blogging 2 years ago, I also started reading disability-related Tumblr blogs more or less daily. It helped me get a feel for, I suppose, a younger, more spirited, less careful community of disabled people. I carried on with regular Tumblr reading until maybe 6 months ago, and then for some reason fell out of the habit. I kept posting to my own Tumblr, but only rarely latched onto or “liked” other stuff on Tumblr.

I found the following this afternoon, a reblog by WheelieWifee, of an April post at Words N Stuff:
1. Ignore their stares. You owe no one an explanation.
2. If they are rude, be witty. If they are rude, be sarcastic. If they are rude, be ruder.
3. Never sacrifice yourself for their approval. You don’t need it.
4. Laugh in the faces of those who call you “faker,” those who call you “scammer,” those who call you “liar.”
5. Walk as slowly as you like. Let them sigh loudly behind you - you are doing nothing wrong.
6. If they’re in your space, tell them. If they don’t move, make them.
7. Don’t feel obligated to “look sick.” Don’t feel obligated to “look well.” Don’t feel obligated to look any which way except how you do right now.
8. Use their words against them. Take the ones they hurl at you and embrace them. They are yours now.
9. Flaunt your “imperfections.” Show off the things they hate. Put stickers on your braces and tattoo the hip that never stays in place. Don’t let them ignore you. Don’t let their eyes slide over you.
10. If they hurt you, if they slip past your defenses and under your skin, if their ignorance is more than you can handle. If they hurt you. Don’t let them know.
cripple punk
april 26/30//q.e.l.//
I don’t agree with every bit of it. For instance, I think that if “they hurt you,” it’s sometimes important to “let them know.” But it’s all good stuff to think about. It’s the sort of thing disabled people who are still struggling with their disabilities and internalized ableism need to read. I’m talking about youth with disabilities, and people of any age dealing with new disabilities. Parents and families should read it, too. It’s the nuts and bolts of disability pride, in very concrete, non-theoretical words.

Must not forget Tumblr.

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Friday, May 15, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
Time again for the Disability Blogger Link-Up, an opportunity to share something you've written, or something you loved reading, with the disability blogging community.

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. Also, if you need to delete or edit a post, let me know and I will take care of it.

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next Link-Up Friday, May 29, 2015.

Thursday, May 14, 2015

Housekeeping

Silhouette icons of three figures doing various kinds of housekeeping

It’s time for some updates on the website and podcast ...

Looking Ahead

Friday, May 15 - Sunday, May 17

Monday, May 18
Downton Abbey, with guests Kelly Anneken and Tom Schneider of the Up Yours, Downstairs Podcast.

Friday, May 29 - Sunday, May 31
Disability Blogger Link-Up.

Monday, June 1
Disability.TV Podcast
Red Band Society, with guest Christina Stephens, YouTube vlogger AmputeeOT.

Friday, June 12 - Sunday, June 14
Disability Blogger Link-Up.

Monday, June 15
Disability.TV
Beedie & Jessa, examining a short storyline in Girls.

Feedback

There are several ways you can comment on the blog and podcast. Most readers use the Disqus comment feature, where you can comment on any blog post by clicking the “Click here to comment”  or pencil icon link at the bottom of each item, just to the right of the post date and time. This feature also allows you to interact with other commenters, and you can comment as a guest, even if you’re not registered with Disqus.

If you prefer to communicate with me directly, you can use my email address: apulrang@icloud.com.

Finally, I would greatly appreciate your general feedback through the survey embedded below, which asks for your opinions and ideas for both the Disability Thinking Blog and the Disability.TV Podcast. The survey is completely anonymous, with no personal data coming to me or collected by SurveyMonkey. I hope to have enough responses to get a good idea of what people like and what they’d like to see here.

Create your own user feedback survey

Support

Aside from commenting and completing the survey, there are three main ways you can help support this site:

Subscribe to the Disability.TV Podcast and leave an iTunes review. Reviews help introduce the podcast to potential listeners, and subscriptions raise the podcast in the iTunes rankings.

Contribute through Patreon. It’s a simple way to make a small but important financial contribution towards maintaining and improving the blog and podcast. Believe me, a little help on this is going to go a long way.

You can also help by buying Amazon products through the Amazon Affiliate search widget on the upper right hand side of the blog. If you’re going to buy something anyway, doing it from here will generate a little money for the blog and podcast, while costing you nothing extra.

Thanks to all the readers and listeners. Your return visits and comments make this all a blast to do.

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Throwback Thursday

Illustration of the time machine from the film "Time Machine".
A year ago in Disability Thinking: Defined By Our Disabilities?

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Wednesday, May 13, 2015

Choosing A Disability Charity

Dylan Matthews, Vox.com - April 10, 2015

I have been meaning to post something about choosing a disability charity or organization for quite awhile. I endorse the advice in the Vox.com article. For those interested in disability matters, I strongly recommend that potential donors and supporters consider the following:

Find out how organizations spend their money, and choose an organization with priorities and interests that match your reasons for giving. Think about what kind of work you want to support. For instance:

- Money, adaptive equipment, and direct services to individual disabled people and their families.

- Programs and facilities that serve groups of disabled people.

- Public education and awareness campaigns aimed at changing attitudes and improving social acceptance of disabled people.

- Organized advocacy for specific changes in laws, regulations, policies and practices that affect disabled people.

Consider giving to an organization concerned with all kinds of disabilities, not just one condition.

Think about whether you prefer to support a locally-foucsed, independent organization, or a more high-profile, recognized organization with a state or national scope.

Seriously consider giving only to organizations with disabled people on staff, in leadership, and on governing boards.

Look very critically at how organizations talk about and portray disabilities. Do they depict disability as a heartbreaking tragedy, a hellish existence, or as something manageable through thoughtful support, social understanding, and good policies? Ask yourself how you would feel about how organizations talk about people like you if you had a disability.

Finally, let me add a couple of thoughts on staff salaries and overhead. Full disclosure ... I speak from my over 20 years of experience working at a disability non-profit organization.

Obviously, you want to watch out for "non-profit" organizations that pay stunningly high salaries to executives, consultants, and even board members. On the other hand, it’s important to keep things in perspective and not relegate all charitable work to second or third-class status in the wider economy. If you care enough about something to want it dealt with effectively, then you should pay enough to attract talented people, and make it possible for them to stick with the organization. That means paying people enough for a decent living for themselves and their families. That goes double for disabled people who work at disability organizations.

In fact, an organizational budget that seems to be heavy on salary and overhead may not necessarily be wasteful. The costs of counseling, education, organizing, and advocacy, are almost entirely in salary and benefits, along with offices, supplies, and perhaps mileage reimbursement, (for home visits), for those staff. If you prefer your money to provide material benefits directly to disabled people, then look for organizations that do more direct services and administer “pass through” funds directly to individuals.

I strongly prefer organizations “by and for” disabled people. I like organizations that do a lot of advocacy, especially fighting for better policies and practices. I split my interest about evenly between responsive, plucky local groups and truly effective and innovative national organizations. These are my personal preferences, but I do recommend them to others as well.

Still, the most important thing is to decide exactly what you want to do in the disability cause. “Giving to the disabled” doesn’t have to be confusing, but it isn’t as simple as stuffing a dollar in a can, either.

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