Monday, December 30, 2013

“American Girl” Petition … Followup

Yesterday, I posted the video from Melissa Shang, asking people to sign a petition urging “American Girl” to add a doll with a disability to its collection. Today I read a fantastic article that has a lot more to say about this:

Emily Ladau, Words I Wheel By - December 30, 2013

The only dolls I ever had were a teddy bear and, briefly, a GI Joe. So, all I really know about dolls is what I’ve picked up drifting around the popular culture atmosphere. Emily’s article beautifully underscores why creating a disabled “American Girl” doll would be so great, and why it matters how they do it, if they do it.

Wheelchair Santa ... Followup

Illustration of Santa Clause sitting in a wheelchair, smiling, arms wide open, with a wrapped present on his lap

A commenter has found a pretty good Wheelchair Santa picture. Works for me!

Disability In India

Monica Sarkar, CNN - December 27, 2013

I’m honestly not sure whether this article accurately describes how disability is perceived in India, or whether it’s a mix of a few individual Indian’s viewpoints and westerner’s interpretation of Indian belief. I am struck by how similar the ideas presented are to American views of disability. Our ideas a bit fuzzier and softened by careful language. We don’t believe in Karma quite as literally. But we do still make judgements about people with various disabilities. We do choose some disabled people for praise, and ignore others. And we do sometimes forget that money and prior social status can make life with a disability much easier to negotiate, even if it’s never quite easy, and acceptance is rarely complete.

Sunday, December 29, 2013

"American Girl" Petition

I admit it. I signed this petition asking American Girl to make a doll with a disability because this kid is so cute. But I also signed it because I was frankly amazed that American Girl doesn’t have a disabled American Girl doll already. Click here to sign the petition.

I first saw this on the hellomynameismaddy Tumblr blog.

Weekly Wrap-Up

Disability Thinking Weekly Wrap-Up
Monday, December 23, 2013
Wednesday, December 25, 2013
Thursday, December 26, 2013
Friday, December 27, 2013
Saturday, December 28, 2013

Saturday, December 28, 2013

Sound Familiar?

I found this video at the Disability and Representation Facebook page. The owner also has a great blog of the same name that’s well worth reading.

Some of the “shit” lines in it are just as familiar in settings other than academia. I think it’s the earnestness of the phrases that smacks of a uniquely academic variety of smarm. Also, there's a tone of condescension, of knowing better, that seems to go with people who are used to thinking of themselves as more enlightened than the average person, no matter what the subject.

Friday, December 27, 2013

Photo Of The Day

Short woman and tall man, holding hands, both well dressed, both holding microphones
From the Disabled People Are Sexy Tumblr blog.

5 Disability Television Moments of 2013

Culture topic icon
These aren’t be the best or the worst … just the most notable disability moments I saw this year. What did I forget?

1. Flynn (Walter, Jr.) finally steals a scene or two on “Breaking Bad”.

Flynn did more in the last three episodes of “Breaking Bad” than he did in the entire rest of the series. First he physically defended his mother Skyler, from his father Walt’s attack. Then he arguably delivered the definitive condemnation to Walt in a phone conversation where he utterly, definitively rejects Walter’s efforts to reconcile. Flynn was woefully under-utilized for almost the entire run of this excellent series. Still, his disability was never either masked nor over-played. A different writing team might have made Flynn's disability the main motivation or excuse for Walter White's escalating greed. In the end, keeping Flynn on the back burner so long may have made his confrontations with Walt that much more powerful. Whatever. It was just so cathartic for me to see Flynn not only turn against his father (about time!), but physically defend his mother in a way that looked very realistic for someone with exactly his kind of disability. It wasn't like his disability magically disappeared. He basically had to throw himself between Walt and Skyler, then use his arms and crutches to back up against Skyler, all while facing Walt. And, of course, whipping out his cell phone and dialing 911. It was the opposite of elegant stage fighting, but brutally realistic.

Television set with wheelchair symbol on the screen
2. Great moments for the “Asberger" characters on “Parenthood” and “The Big Bang Theory”.

Both of these shows give us depictions of people with Asberger Syndrome that are sometimes problematic and simplistic. However, there were moments of real insight this year in both shows. On "Parenthood", Max started to emerge as a real person, rather than a bundle of funny / aggravating tics. Also, I felt like I saw glimmers of a subtext suggesting that Max's parents are more messed up and selfish regarding Max than Max is himself ... even though extreme self-centeredness is supposedly his defining characteristic. As for Sheldon on "The Big Bang Theory", the scene where he and Amy talked about the nature of their relationship more than made up for another season of cheap laughs at Sheldon's expense.

3. Small parts for wheelchair using characters on “Orange Is The New Black” and “Sleepy Hollow”.

These two shows couldn’t be more different, but each introduced a part-time or short-term character in a wheelchair. Interestingly, both were female, African-American teenagers. Both were balanced, realistic characters who contributed to their shows’ plots without overwhelming them. Both were fun to watch, and more or less empowering. And because they were minor characters, they were pleasant surprises.

4. The “Ironside” remake’s failure to thrive.

It should have been a landmark, a breakthrough for depictions of wheelchair users. It could have been a true "reimagining", like "Battlestar Galactica", with deeper characters, compelling story arcs, and a distinct visual style. Instead it played like a generic procedural that happened to feature a cop in a wheelchair. I'd love to see Blair Underwood reprise his Ironside role as a guest on other cop shows. I really think that might work better than trying to build a whole show around the character as it was written.

5. Success (well, survival) for “The Michael J. Fox Show”, but does t matter?

I stopped watching after the fourth episode, out of pure apathy. It was okay, but just okay, in a year when there were great shows of all kinds, every night. The disability messages were good, but it feels like they have said all there is to say about Parkinson’s Disease, which leaves just a dated sitcom about enormously privileged, atypical people living in Manhattan.

Thursday, December 26, 2013

Wheelchair Santa

Color illustration of Santa Claus in a wheelchair, looking angry and shaking his fist
Yesterday I Tweeted that I’ve been looking for a good “wheelchair Santa” picture for years. Then it occurred to me that I’ve never actually just done a Google Images search. Surely, I’ll find something good, right?

Well, there were a lot of pictures, about half of which could be properly described as related to the theme of Santa Claus in a wheelchair. But seriously, this is the most on on topic picture I could find, and it’s awful. Santa's in a wheelchair all right, but he’s grumpy! He’s a grumpy, bitter, cripple Santa. Thanks a lot. It’s good to see that kind of positive disability representation in a beloved cultural icon.

On the bright side, there’s clearly an opening for a fun, interesting, or empowering photo or illustration of a wheelchair Santa. Let’s get on that, shall we? We’ve got a year 'till next Christmas.

Wednesday, December 25, 2013

Families That "Get It", and Those Who Don't

On Monday I wrote about holiday conversations about disability with family. I hope I didn’t leave the impression that I have lots of complaints about how my family deals with my disability, because I’ve been very fortunate on that score.

My family have never been either sentimental or critical about whatever’s going on with my disability. "Fortunate" really is the word, because I’ve come to understand that there is a very wide range of familial attitudes towards someone’s disability. Some families are downright sick and hostile in their approaches, and even good intentions don’t guarantee good results. I suppose that’s natural. Rightly or wrongly, disability is still generally viewed as a misfortune at some stage … whether at birth or after illness or accident. Some types of disability also for some reason invite the creation of all kinds of crackpot theories and beliefs … from the causes and proper “treatment” of autism, to distant hopes for repaired spinal cords, to doubts about the substantive reality of invisible conditions like chronic pain and depression. Sometimes it seems like we are forever swimming up a swiftly flowing stream as we try to asset positive, realistic understandings of our disabilities.

Then, just as we begin to lose hope, we again encounter friends and family who just naturally “get it”, without needing awareness campaigns or disability studies classes or long, awkward, exasperating conversations. Good for them … God bless them if that works for you. They also prove that disability acceptance is not, after all, that difficult, unnatural, or counter-intuitive. Some people get there on their own. My family does, which makes me very glad, but also impatient all over again about the other families that don’t, and seemingly won’t, understand.

I’m thinking today about all the other disabled people who read this blog, or my Twitter feed and Tumblr blog, for whom family time is not happy, not supportive, not restful. I hope you all find ways to have a happy, safe, empowering day regardless.

Monday, December 23, 2013

Happy Holidays! Illustration of bells with red ribbons

Photo Of The Day

Woman in wheelchair speaking into a hand-held microphone, "I'm fairly certain that the only reason I was born crippled was because God knew I wouldn't be able to resist the urge to become a stripper." Ally Bruenner

Holiday Conversations

It has become a familiar annual joke, and a favorite topic for columns and blogs ... those annoying, uncomfortable, or just plain weird conversations we have, at Thanksgiving and Christmas, with relatives we talk to only once or twice a year. Most of the time, people are talking about arguments over politics or religion, or else eye-rolling queries about our love lives, marriage plans, and when the hell we're going to give someone grandchildren. But, what about those of us with disabilities?

We have to grapple with these topics too, of course, but we all are confronted with other topics that seem to come with the disability experience. What kinds of disability talk do we dread, or maybe look forward to, during the holiday season?

• Do your relatives pester you to work harder at therapies? Do they suggest "new" treatments, alternative therapies, or doctors that you've already considered ten times before?

• Do they over-praise you for the smallest adult accomplishments? Or, do they still treat you like a child ... their precious "special needs" child?

• Do they noticeably avoid topics with you that they constantly bring up with your brothers, sisters, and cousins of the same age ... like boyfriends and girlfriends, education, or career plans?

• Do they act uncomfortable or impatient with things you'd like to share? Do their eyes glaze over when you talk about "disability issues", or your new thoughts and ideas about disability gained through another year's experience, advocacy, or education?

• Is your family too curious? Or, not curious or interested enough?

How does your family view and talk about your disability?

And while I'm on the topic of family conversations around disability, what about parents of disabled children? I'm sure I can only begin to imagine the mix of emotions about those holiday conversations, a mixture I'm sure of support, sentimentality, judgement, and indifference.

Add your thoughts in the comments below!

Sunday, December 22, 2013

The Power Of Fashion

Fashion is such an interesting career choice for someone with a visible disability. On the surface, it seems to have nothing at all to do with disability. But, in a way, it has everything to do with it. Maybe it’s the idea that fashion … which can easily be perceived as trivial … can truly give a person the power to project whatever image they choose, at will. And it doesn’t have to do this by masking. At its best, fashion enhances what the person already has.

There are at least three or four things that Jillian says in this video, very briefly, that are very meaningful and thought-provoking. So, I might return to the video to comment on them as this week goes by.

Saturday, December 21, 2013

The Parking Lot Vigilantes

Handwritten message on personal notepaper reads "Shame on you! A Real Handicapped Person"

This was not posted for quite the reason you may think.

The person who posted this note is a disabled person, but someone with a disability that isn’t visually or immediately obvious to the casual observer. So, when she walked away from her car, after parking in a handicapped spot … with a proper permit … she returned to find this note under her wiper blades. Because someone who walks away from a car parked in a handicapped space must be a lazy cheater. Plus ... "A Real Handicapped Person"? That's quite a can of worms right there.

I’m starting to think that the only thing worse than people parking illegally in handicapped parking spaces … or indeed using any accessible features improperly … is people who hassle people with invisible or ambiguous disabilities in a well-meaning attempt to police accessible facilities. There are all kinds of disabilities, and severity isn’t always apparent to the naked eye. If you really feel strongly about intervening in violations, focus on the permit, not the person. If they’ve got a permit, leave it at that, not matter what your instinct tells you.

Friday, December 20, 2013

Pictures Of The Day

Pastel drawing of Oracle, female comic book character in a wheelchairColor illustration of Oracle, female comic book character in a wheelchair
I’ve never been a comics person, but I love that there’s a wheelchair-using superhero. I also just remembered the short-lived TV series Birds Of Prey, in which Oracle, (a.k.a. Barbara Gordon),was one of the main characters.

First picture: From the Adventures Into Mystery Collectables Tumblr blog, via Demonically Disabled.

Second picture: From the Gotham’s Art Tumblr blog, via Demonically Disabled.

Wednesday, December 18, 2013

Kinda Christmas, Kinda Disability ...

This is only barely a Christmas song, and even less a clear disability-related song. Yet, some of the lyrics and the whole vibe of the song reach me as a disabled person in a way I can’t quite explain. Am I the only one?

P.S.: Ooops. I posted this back in June as well.

Photo Of The Day

Photo of a double leg amputee world war 1 veteran playing pool
First World War amputee ... From The Adventures Of Slothman Tumblr blog, via Just Rollin On.

Tuesday, December 17, 2013

Photo Of The Day

Lego model of a house with a wheelchair ramp, plus a Lego figure in a wheelchair

From the Lego Cuusoo website.

This is a sort of Kickstarter-type site for proposed Lego designs. Models that get 10,000 votes or more are reviewed by Lego quarterly, for the chance to be developed as an official Lego product. Please log in and vote for the "Accessibility Set"!

Monday, December 16, 2013

About That Interpreter ...

Elizabeth Weise, USA Today - December 13, 2013

I have put off commenting on the story of the fake / bad Sign Language Interpreter at Nelson Mandela’s memorial service. It seemed like the story changed every half day or so, getting stranger and more politically messy at each step. At this point, it seems like there are several intersecting issues of justice, politics, bureaucratic incompetence, and racial politics involved, in addition to the obvious insult to Deaf communities in South Africa and around the world. However, this USA Today article might be a good place for most of us to wrap up our involvement in the story. However it happened, it sure seems like this was a failure to follow some well-established standards and procedures for Sign Language Interpreting, which is a profession, not an art or a charity.

I would only add that in the United States, though the standards are well-established, they are not yet well known, and hospitals, courts, and workplaces too commonly employ “interpreters” who are just as “fake” as that man in Pretoria last week.

Blog Notice ...

Light posting this week, while I work on a grant application.

Saturday, December 14, 2013

Photo Of The Day

Green plastic army man in wheelchair
From the Vuas Tumblr blog, via Rolling Through Life.

Old Arguments and Disability Studies

Girl With The Cane - December 14, 2013
“... people that need that wheelchair ramp to be clear in order to get into the business didn’t ask for the disabilities that make a wheelchair ramp a necessity, and their money is just as good as everyone else’s. Business owners need to ask themselves if they can afford to potentially turn clientele away.”
This is the most widely used argument … aside from adherence to accessibility codes … for making businesses accessible to people with disabilities. For a long time, particularly in the years immediately following the Americans with Disabilities Act, it was a new, almost radical argument. Accessibility isn’t about compassion for the disabled, it’s good business! I still think it’s a very good argument today. The trouble is, I don’t think we really know how good an argument it is. Where are the studies showing not just the potential economic clout of disabled people, but the difference it makes for real businesses when they are or aren’t accessible?

Do disabled people and their families, in fact, shun establishments that aren’t accessible? Are elderly people in significant numbers conscious of accessibility as a distinct issue, in a way that affects their decisions about where to shop and eat? What about other variables, like the age of buildings, downtown vs. urban sprawl locations, and type of business? Are businesses with affordable prices more, or less likely to be accessible? Do accessible businesses tend to be “high end” and expensive? How much can a business actually benefit from improving accessibility? How significant is the loss if they don’t?

I’m not suggesting that the answers to these questions would change our objectives or lessen our commitment to accessibility, but some updated facts might change our tactics, or our understanding of why business people think the way they do about people with disabilities.

Emma Tracey, BBC News Ouch! - December 3, 2013
“One of my concerns with disability studies degrees, is that most of what people are learning about can't be turned into concrete knowledge to improve the general public's understanding of disability. It seems to be very much about phenomenology and post-modernism, which pass most people on the street by."
My questions above reminded me of this piece I read on the BBC "Ouch" website, which includes an interview with Richard Reiser, an Englishman who is both familiar with and critical of "Disability Studies". I think it's the first time I've heard a credible disability activist articulate an essential question I've had for awhile about Disability Studies ... What, exactly does Disability Studies study? And, does it study any of the questions I, as a disabled person, am interested in? We've been using the same arguments and statistics (more or less) that we've been using in discussions of accessibility, economic influence, employment and the like, since at least the early '90s and probably before. It would be helpful if university-based programs whose job is to "study" "disability" would delve into these practical questions, along with the cultural and philosophical pursuits the field is known for.

For all I know, there may be lots of studies by Disability Studies scholars on the psychology of disability discrimination, the economic status of disabled people, what HR professionals really think about hiring disabled people, why disabled people seems of be fair game now for accusations of fraud or laziness, and how disciplined people with disabilities are in fighting for our rights in the marketplace. But if such studies exist, I haven't seen them, and I've been looking.

Friday, December 13, 2013

Don't Let Us Happen To You!

Radio Free Europe, Radio Liberty - December 12, 2013

I haven’t been feeling well today, but I’m a little better now, so I’ll just do this quick post.

The article above concerns one of those disability prejudice incidents that are easy to recognize and be outraged over. There’s a person we can be mad at … an enormously privileged and possibly ridiculous person to boot. The problem is that people with disabilities are cast as punishments in cautionary tales all the time. Usually, it’s when there’s some other goal being discussed that has nothing to do with us. We function as a convenient example of what can happen with things or wrong, or when people misbehave.

Doesn’t if feel great to be of use?

Photo Of The Day

From the Blithe’s Life Tumblr blog, via Wheeliewifee.

Thursday, December 12, 2013

Photo Of The Day

Woman in wheelchair dressed in "steampunk" style, with wheelchair in the same style
From the musiclove Tumblr blog, via the fogwithwheels Tumblr blog.

“Pick Yourself Up …"

Stories topic icon
The latest AmputeeOT video made me think of another story I’ve been told about my early childhood.

After I finally started walking, which was when I was 3 years old, my mother at some point told my older brother that she couldn’t let me go outside to play by myself, because when I fell, I wasn’t able to pick myself up again. Ian, who I’m guessing was 17 years old at that time, took me outside in the yard and by watching how I moved in various situations, where my strengths were, and my various ranges of motion, figured out a way that I could get myself up to my feet without help. That’s Occupational Therapy right there … kind of like Christina’s demonstration of standing up on an icy surface with a prosthetic leg. This is another childhood milestone I don’t actually remember, but it sure sounds right. And I know for sure that it meant a lot to Mom.

Wednesday, December 11, 2013

Video Of The Day

This is a pretty good unintentional sequel to last week’s Mannequins video. I love the bit with the woman describing her family’s reaction to each of her four pregnancies.

Random Acts Of Kindness

Ideas topic icon
Just Rollin On - December 10, 2013

This blog post caught my eye yesterday. The blogger, a wheelchair user, describes his conflicting feelings when an older woman in a grocery store ... a complete stranger ... spontaneously offered to pay for his groceries. He describes feeling that his reaction was not what he would have hoped, because he failed to turn down the woman's offer, felt angry and condescended to afterwards, and felt guilty for feeling uncomfortable with the entire scenario.

I have had people offer to let me go ahead of them in lines at cash registers, but I can't recall having anyone offer to pay for stuff I'm preparing to buy. I'm not counting the couple of times in recent years when someone ahead of me in line at a drive through has paid in advance for my cheeseburger and fries. I don't count it because most likely they didn't see me or know that I have disabilities. Also, I've learned that this is a thing people do nowadays ... they "pay it forward" by anonymously treating people they don't know, especially in drive-thrus. The people who do it feel it's a great way to spread happiness without taking selfish credit. Some people receive said happiness with good cheer, while others feel uncomfortable, or ... like me ... wonder if they'd be as generous when it comes to supporting tax-funded support programs like Food Stamps or Unemployment.

Those issues aside, disability can cast a different light on these situations, both for the would-be giver, and the receiver. As is becoming my habit when I'm not sure I've got an issue figured out, I'm just going to make some bullet pointed points about disabled people and "random acts of kindness":

• The whole dilemma is about three entirely different, in some ways conflicting factors that can all be active at the same time:

1. The desire to be kind to strangers, particularly those you perceive to need of kindness.

2. The real need some (or all?) people have for kindness and generosity.

3. The harm and discomfort that can come when social inequality is reinforced or emphasized by unexamined assumptions and lack of sensitivity.

• Actually, number 3 there is the real issue. The receiver is almost always just a little bit ... if not a great deal ... put off balance and made to feel uncomfortable, and unequal, by these out of nowhere gifts, especially when they are public.

• I don't think you have to be cynical to realize that random, unexpected, public generosity ... whatever positives may flow from it ... area actually quite likely to make a recipient uncomfortable. That should just be common sense.

• I'm not a big fan of the anonymous gift in the drive-thru line, but I prefer it slightly to the more public method, like what the blogger describes. Whether or not the woman meant anything but pure kindness, it comes off as a rather self-aggrandizing, attention-seeking gesture. The supposedly desired effect could have been achieved without causing a fuss, but she chose to make her gesture public.

• On the other hand, doing it anonymously almost completely removes the possibility of refusing, while asking first ... which the woman did ... at least makes it possible for the potential recipient to say, "You're so kind, but no, thank you, I've got it." It's the same principle as not immediately starting to push a wheelchair user up a hill, but asking first if they'd like some help.

• Probably the most important factor in a scenario like this is how the would-be giver accepts the turn-down. If they say, "Okay, just thought I'd ask. Have a great day!", then the whole thing becomes just a pleasant interaction, and nobody feels slighted or placed in an unequal position. If instead they insist, it quickly becomes obnoxious.

• If the intended recipient is obviously disabled ... in a wheelchair for example ... then one should assume that the potential for offense is quite high. Not because disabled people are more crabby than others, but because there are just too many ways the gesture can be misinterpreted. This is a good place to "check yourself". Ask yourself, "Why am I offering to buy THIS woman's coffee?" If the answer is anything like, "Because she's using crutches and must have a hard life", then rethink before you act.

• If we disabled people really feel strongly about unsolicited charity, and hate the imbalance it implies, maybe we could do something ourselves to restore balance. Why don't we start offering to pay for random, non-disabled peoples' coffees or groceries? It would be unusual enough that if enough of us started doing it once a week maybe, I'm sure it would make an impression.

I'd be curious to find out what others think. Click below to comment!

Tuesday, December 10, 2013

Photo Of The Day

Photo of a sneaker with a worn out hole in the sole
From the CP Shoes Tumblr blog.

This is a fascinating blog with a great premise … the little-known problem of early shoe death due to the strange ways of walking that often come with physical disabilities.

Advocacy To Serve

Advocacy topic icon - December 7, 2013

I don’t know how the heck I found this article, but it got me really excited.

When I was a Junior in High School, we all took a standardized test used by the military to identify aptitudes for different military occupations. It was kind of fun, and I thought nothing of it. A few months later, I started getting brochures in the mail from different branches of the military. Then, one evening, our dinner was interrupted by a call from a Navy recruiter who wanted to tell me how awesome the submarine service was. He actually never spoke to me, but my father toyed with him for awhile, before asking him how they would accommodate my disabilities. At the time, I thought the whole thing was kind of funny, and I have never had any desire to serve in the military, even as a childhood fantasy.

Still, I occasionally think about this incident, and how truly strange it is that I couldn't serve in the military, even though there are plenty of things I could have done that have nothing to do with physical fitness ... useful things not requiring living in a submarine, riding in a tank, flying a fighter jet, or going on a foot patrol. Which is why this Israeli man's successful self-advocacy excited me. His physical disabilities are if anything more significant than mine, but he's doing his part. Obviously, he's motivated by beliefs I have a hard time relating to, but that’s beside the point. He wanted to serve, and seems to have known, on some level, that there had to be a way he could do so. His advocacy was personal and persistent, and successful.

When will something like this happen her in the USA? When will a highly motivated disabled young person offer him or herself to the military long enough and sincerely enough to break through to a real service role?

Monday, December 9, 2013

Video Of The Day

There’s nothing actually very new in this video, about the Croatian Paralympic Team, but for some reason it’s just better than most of the videos like it that I’ve seen. I think maybe it’s the lack of dialog or slogans. I’m really starting to think that this is the secret key to disability images … let the pictures do the talking; we’ll get the point.

Of course, having written about it, I've ruined it.

Disability News

News topic icon
Maggie Clark, Pew / Stateline Staff Writer, USA Today - December 6, 2013

The case involves the State of Florida, which uses only IQ to determine whether a convicted person is “mentally retarded” and therefore ineligible for execution. A few other states use very narrow or very difficult to prove criteria to determine intellectual disability, while most states use a “3 prong” approach that takes several factors into consideration. It sounds like the Supreme Court might be ready to give clearer, possibly better criteria to all the states.

I’ve still never heard anyone discuss how legally defining intellectual disability in death penalty cases might affect non-criminal cases like competency and guardianship. Since I oppose the death penalty, I’d be glad to see any ruling that removes more “borderline” cases from death row. But, I’m also worried what else might happen when more people are deemed legally not responsible for their actions, due to intellectual disability. Lots of intellectually disabled people would benefit from having more responsibility and autonomy in their lives.

Benjamin Weiser and Matt Flegenheimer, New York Times - December 5, 2013

Obviously, this is a great victory for disabled people in New York City. As someone who lives in a small town, though, I’m hoping that in a few years, used accessible cabs from New York might provide more accessible service in rural areas. Where I live, even one accessible taxi would make a huge difference.

Hillel Aron, LA Weekly - December 5, 2013

After reading this story, I went looking for information on LA Weekly, wondering if it was a heavily partisan, right-wing newspaper. It seems not. It's more like the Village Voice, a little "out there", but artsy, and left-of-center. So, I’m even more disgusted at the story, and afraid of how many otherwise sensible people will start to believe that this one guy is indicative of some sort of ugly trend. More specifically, this is just shoddy journalism. The article refers to a “sizable but unknown amount of cash” the man has collected from his ADA lawsuits. If the amount is unknown, how do you know it’s sizable? The article explains that only California law permits collecting damages from ADA lawsuits. So really, it isn’t the ADA at all … it’s a California law he’s suing under. It may be modeled on the ADA, but it isn’t the ADA, which is a Federal law. And the cartoon at the top of the article is really pretty offensive and snide.

I really worry that the next big thing in the social history of disability is going to be the general public buying into a whole matrix of myths that cast us as dishonest, lazy, selfish, irritating, and delusional. These are already active, but I'm concerned that they will take the next step from shameful prejudices won't admit to, to hip, cynical joke themes enjoyed by "smart" readers of alternative weeklies like the LA Weekly.

Friday, December 6, 2013

Revisiting Rookie

Culture topic icon
I’m a big admirer of Rookie, a website on fashion and pretty much everything else for teenaged girls. I admire it not because I’m interested in fashion or teenage girls, but because it’s a beautifully conceived and designed grassroots community website, with terrific writing, led by a pretty extraordinary young woman, Tavi Gevinson. Back when I started this blog, I posted a TED Talk by Tavi, because I was sort of thinking that disabled people need a site like Rookie, focused on disability life. There are some good all-purpose disability websites out there, and a lot of great blogs, but I still haven’t seen a site as cool as Rookie, that’s inclusive, but has a point of view.

Anyway, that’s why this post by someone I follow on Tumblr and Twitter caught my eye. I am so glad Rookie did a story / photo exhibit, on youth with disabilities. I hope it isn’t the last one. Here’s a link directly to the article, if that’s easier.

Rookie, Lauren Poor and Maddy Ruvolo - December 6, 2013

In case you missed it, here’s the TED Talk:

… And here’s some of what I wrote about it:

In her presentation here, Gevinson talks about the difficulty of finding strong female characters in popular culture. You can find strong female characters in movies and on TV, their strengths tend to be defined by singular, narrow characteristics:
"They're not strong characters who happen to be female. They're completely flat and they're basically cardboard characters. The problem with this is that then people expect women to be that easy to understand, and women are mad at themselves for not being that simple. When in actuality, women are complicated, women are multifaceted. Not because women are crazy, but because people are crazy, and women happen to be people.”
Now try this. Replace the words I've colored red with "people with disabilities", or your favorite "disability" term, and these observations are just as true. The same holds for lots of the articles and blog posts on Rookie about being female and a teenager.

After reading the New Yorker article, and then exploring the Rookie website, I came to what should have been an obvious thought. Disability is at least as varied, vexing, and misunderstood as being a teenage girl. Why not apply the techniques, models, and attitude of Rookie to the disability experience?  Start a blog on the topic of disability, and expand it into an online magazine / community by and for people with disabilities. Most importantly, give it personality and a point of view. Make it a site people with disabilities want to visit.

So, what do you all think? How can we get our own version of Rookie going, and can we sustain it?

FDR Reconsidered

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Fresh Air, National Public Radio - November 25, 2013 — via Media dis&dat

Late last month, Fresh Air’s Dave Davies interviewed James Tobin, author of “The Man He Became: How FDR Defied Polio to Win the Presidency”. Tobin challenges the widely held assumption that President Franklin Roosevelt basically hid the physical disability that resulted from polio. He asserts that while FDR worked hard to prove his restored good health, and to make people feel comfortable with him so they would overlook his disability, most Americans knew very well that he couldn’t walk or stand unaided. Based on the interview, (I haven’t read the book yet), it seems like Tobin has presented by far the most historically accurate and sophisticated account of FDR’s disability.

For those of us with disabilities, especially the ones who struggle with the balance between medical aspects and social aspects of our disabilities, the account depicts a man who really did balance the many conflicting ideas, priorities, and feelings that war with each other in disabled people to this day. He remained committed to the hope of a cure, yet he carefully planned and calibrated a return to his political career. He made it his responsibility to make non-disabled people feel comfortable with him, yet there’s no hint or evidence that he felt any sort of shame about his disability. And Tobin tells of at least two times when Roosevelt consciously used his disability to better understand others with disabilities, and to inform political policy. He even tells how political opponents briefly tried to say that FDR's disability was actually from syphilis, not polio … perhaps an early example of the, “You’re faking or misrepresenting your disability!” meme that seems to be such a thing nowadays.

As for the notion that he hid his disability, or that others helped him hide it, that never made much sense to me. I do think that there was a different standard for openness about personal issues back then, which means that he didn’t go out of his way to talk about his disability, or to share his feelings about it. It would have been thought impolite or impertinent for others to focus on his impairments as well. But, that’s not the same thing as deliberately concealing a disability … trying to prevent people from knowing about it. Which, by the way, puts a very different spin on the MS concealment storyline on “The West Wing”, which relied quite a bit on everyone’s understanding on the show that FDR would never have been able to be elected from a wheelchair with modern-day television and journalistic standards.

This interview also made me reflect again on the fact that my mother … who grew up during FDR’s Presidency … told me many times that “everyone knew” FDR couldn’t walk. They didn’t know all of the details, but the basic fact was understood.

The program is well worth a listen, and now I’m off to buy the book … well, the audiobook.

Thursday, December 5, 2013

What Nelson Mandela Means To Us

I came of age in that period of just a few years when the Cold War ended, and Apartheid in South Africa ended. Mikhail Gorbachev did his part, in a mostly technocratic way, while Nelson Mandela had a more emotional appeal.

Nelson Mandela was one of just a few people who can truly be said to have played a key role in history. What he symbolizes to me is the idea that the way things are in the world isn't necessarily the way they have to be. Cold Wars don’t have to go on indefinitely. Totalitarian regimes that wield dictatorial power don’t have the power to sustain themselves forever. The players on the world’s chessboard in your childhood may be different when you are an adult. Not just in different positions, but with entirely new pieces. This is both liberating and frightening.

I don’t think it’s too much of a stretch to say that it’s an important idea for disabled people. We would appear to be prisoners of “the way things are”; our bodies or minds impose difficulties that are mostly beyond our control. Yet, if we can identify things that are under our control and make the most of them, then we don’t have to erase our problems in order to triumph. Racial animosity is a reality of South Africa that nobody could undo. But Apartheid as a policy could be changed, and that was enough to help South Africa start to evolve away from racism. We can’t become un-disabled, but we can do other things that make our disabilities more manageable, and our lives excellent.

There's another angle, too worth remembering tonight. A big part of the philosophical justification for Apartheid was a very particular concept of "the way things are" ... that black people were inferior and in need of supervision from white people if they were to enjoy just the scraps of modernity. While plenty of Apartheid supporters had more selfish motives, no doubt that many really believed, on some level, that the restrictions of Apartheid were for black peoples' own good.

Anyone who has lived long enough with significant disabilities can, I'm sure, understand that idea from the opposite end. One of the things Nelson Mandela did was to show that freedom and liberty are worth the apparent risks. Risks that are, in any case, probably overblown.

Rest in peace, Nelson Mandela.

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