Saturday, November 30, 2013

Photo Of The Day

Woman with prosthetic right arm, decorated with multicolored feathers

From the Disabled People Are Sexy Tumblr blog (woman prosthetic arm)

Documentary Trailer

I really want to see this documentary, CinemAbility.


From the trailer, it looks like a very good starting point for discussing disability depictions on film. I wonder how deep the analysis goes? Does it stop with noting the familiar villain / hero cliches, or does it tease out more complex ideas? I also wonder if they look at television, too. I really think you have to.

Hopefully, this will come to Netflix or some other streaming service soon.

Friday, November 29, 2013

3 Year Old Me

Stories topic icon
Thanksgiving is family time, and family time is photo album time.

I was at my Brother and Sister-In-Law’s house for Thanksgiving, and had a chance to look at a couple of long lost family photo albums. One of them included photos from the early ‘70s when I was a very young kid, and these two really blew me away. I was going to bring the albums home, but forgot, so Ian was kind enough to scan and email them to me.
young child in two-leg cast held in a reclined wheeled carrier, being pushed by a teenage girl
These are pictures of me taken in 1970, when I was about 3 years old. I'm not sure who the girl is in the second picture, but Ian thinks she might be someone my parents sometimes hired to help take care of me.

I had had surgery on both of my legs, after which I was in a double-leg cast for several months. The thing I’m in is something my parents thought up, put together by people at a local bike shop, North End Repair, which is now North End Harley-Davidson. It’s made of a standard walker, with wheels attached to the back two legs, two added foldable legs, a series of hooks that attached to hooks on both sides of the cast, so I could be latched into the thing, and a mattress / pillow arrangement for comfort. This configuration allowed for three uses. It could stand me up vertically, tip back for a partial recline position, or become a sort of wheelchair for easy mobility. Since my casted legs were heavy and immobilized, I can't imagine my family looking after me without something like this, yet nothing like it existed as a buyable product at the time. It was pure innovation and resourcefulness, by my parents and a home-town bike and motorcycle repair place.

My Father told me some years later that he tried to get medical equipment people interested manufacturing something like this, but nobody was interested. I’ve still never seen anything quite like it, except maybe for wheelchairs that can stand and recline. Most of those, though, seem a lot heavier and harder to transport in a car.

It's probably been decades since I last saw these pictures. I don't have any identifiable memories of this time, so my whole understanding of this period my life is based on pictures and what my family has told me. How do I feel, looking at these photos? Mostly I'm reminded of how much my parents did right with me, when faced with a lot of unanswered questions, and mostly without much in the way of professional or peer support. They did a hell of a lot, really well, with little else to go on but brains and instinct. Also, I wonder how many other kids, with similar conditions, spent chunks of their childhoods essentially bedridden, simply for lack of a contraption like this.

Wednesday, November 27, 2013

Cartoon Of The Day

From the Disability Curious Tumblr blog.

For all the disabled people traveling tonight ...

Disability Thankfulness

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I notice a lot of people post to Facebook daily during the month of November, with things they are thankful for. That got me thinking about my "Disability Thinking" blog, and how generally negative it is. For awhile, it felt good to be an unshackled complainer rather than a booster, but I think maybe the balance has gotten out of whack. Thanksgiving might be a good time to start working on that. So, here it goes:

Im thankful that my disabilities have for the most part not included chronic pain.

Im thankful that I was born with my disabilities, which means I never had to go through the traumatic period of loss, adjustment, and even identity crisis that people do when they acquire their disabilities later in life.

Im thankful that I was born into a progressive, loving, supportive family that never did or said anything to seriously undermine me, either intentionally or inadvertently.

I’m thankful that my family had the financial resources to provide me with a plentiful childhood, a great education, and a financially secure start in life.

I see that these are mostly about difficulties I haven’t had to cope with. It doesn’t mean that I think my life would have been horrible or impossible if things had been otherwise. It doesn’t mean that I pity or devalue people who can’t be thankful for these things. I'm pretty sure they've got things they are thankful for that I can't claim. I guess what it amounts to is that for better or for worse, I am thankful … on average … for who I am and turned out to be.

A Pleasant Little Surprise!

icon of old tv set with wheelchair symbol on the screen
I think I’m having a disability-related nerdgasm. Sleepy Hollow, that wonderfully batshit crazy, time-shifted, fish-out-of-water, mythology mashup of a TV show, has added a character in a wheelchair! She’s the teenaged daughter of the police chief, a character that’s becoming better and better himself as the show progresses. She might be just a one-time guest character, and I doubt she’ll ever become a main character, but that works fine for me. She seems like a pretty cool person … cool, but normal, neither a super-crip, nor a bitter basket case.

This show pays new dividends every damned week, and this was such a bonus!

Tuesday, November 26, 2013

A Good Advocacy Result, But I'd Like A Bit More

Advocacy topic icon

The Ethicist is a regular column in the New York Times. People send in their ethical questions, and The Ethicist discusses the dilemma and provides some kind of answer. Klosterman doesn’t seem to be very judgmental or superior, so I’m not all that surprised that the parent in the blog post below got a positive response.

Love That Max - November 25, 2013

What does surprise me is the nature of Klosterman’s response. In a way, it seems too personal. It should be more public, considering his whole job is discussing moral and ethical issues in a public forum. An apology letter and a charitable donation are nice, but it might be more helpful to write a column about the “R-Word” and maybe more broadly, “Political Correctness”. One of the problems with this tiresome but necessary debate over language is that people see it as “political”, when really, they need to think of it “ethical”.

Also, I don’t believe for a minute that Klosterman never heard of people being offended by the “R-Word” until he got that letter. He has to have been aware of the controversy long before that, yet until he got that letter, he chose to use the word anyway. If he ever addresses this in a column, he ought to address that, too … why do people continue to do and say things they basically know they shouldn’t?

"Woof To Wash"



The cool thing about this is that even if you don’t need the dog to do every step, it’s great that it can help with any of the laundry steps you might have trouble with.

One of my Facebook friends tipped me off to this last night. Thank you!

Monday, November 25, 2013

Photo Of The Day

Woman lying on her stomach, propped up on her arms, in a shower with six nozzles spaying water over her whole body
From the Wheelie Wifiee Tumblr blog.

I'd prefer a built-in seat, but this is pretty incredible, too.

Disability News

News topic icon
Jeff Lee, Vancouver Sun - November 19, 2013

The tone of this article surprised me a little. I thought there would be more moaning about regulation gone mad. In fact, it’s pretty even-handed. It also gives a very good explanation of the difference between Accessibility and Universal Design.

Margalit Fox, New York Times - November 23, 2013

I hadn’t heard of Adrienne Asch before. I really appreciated reading about how she reconciled being pro-choice on abortion, while opposing “selective” abortion when used to prevent the birth of babies with disabilities. I’m still not sure the two positions will ever fit together comfortably, but I’m glad to see that someone credible made the effort.

The Editorial Board, New York Times - November 24, 2013

It’s interesting to see how different people and organizations approach their editorials in favor of the UN Convention on the Rights of Persons with Disabilities (CRPD). The main difference among them seems to be whether or not they refer specifically to the right wingers who actually derailed ratification the first time. This New York Times Editorial mentions the “sovereignty” claim and the supposed threat to parental rights, but leaves out the role of home schooling. It seems like everyone has to decide whether it’s better to raise these “ ssues" again and refute them, or ignore them and hope most people aren’t aware of them.

Sunday, November 24, 2013

Video Of The Day

From the Crazy Crip Girl Tumblr ...


“If you fall out, and if you have a pain disorder, it is going to hurt, honestly, it is, it really is. But … but the ability to do tricks, though, I find it very ... I think it makes life better for me, personally."

Weekly Wrap-Up

Links to last week's "Disability Thinking" blog posts ...

Sunday, November 17, 2013
Monday, November 18, 2013
Tuesday, November 19, 2013
Wednesday, November 20, 2013
Thursday, November 21, 2013
Friday, November 22, 2013

No posts.

Saturday, November 23, 2013

Saturday, November 23, 2013

Photo Of The Day

"Transformer" style robot toy with leg missing and using a traditional wooden crutch
From the Disability Curious Tumblr blog.

" ... show me what you need in the bedroom."

Culture topic icon
I’ve been feeling under the weather the last couple of days, which is why I didn’t do any blogging yesterday. I wanted to get something up today, so here’s one of the best scenes from “Passion Fish”, a great disability-themed film from the 1990s. I was going to say “underrated”, but “forgotten” might be a better word. It was nominated for 2 Oscars in 1992, including Mary McDonnell for Best Actress. I think this was her most notable role between 1990’s “Dances With Wolves” and her role as President Roslin in the remade “Battlestar Galactica” TV series. But who remembers it, apart from film critics and disabled people?



For what it’s worth, it seems like “Passion Fish" passes both the Bechdel Test, and my proposed Disability Bechdel Test.

Thursday, November 21, 2013

Photo Of The Day

Standing woman bending down to kiss woman sitting in a wheelchair.
From The Experience Tumblr blog.

Tough Love?

Stories topic icon
Love That Max - November 21, 2013

I have started reading Love That Max, a blog about disabilities from a parent’s point of view. So far, it’s the only parent-oriented blog that I follow.

My parents didn’t talk to me much about my disabilities when I was growing up … at least not directly. At least not that I remember. Reading the Love That Max post linked above, I thought of one time when my Mother told me about her reaction when I was born and found to have several complicated “problems” that nobody seemed to have a handle on.

Mom told me that for an unspecified amount of time right after my birth, she was very upset, angry, grief-stricken, whatever. She then told me one day she was unloading her feelings with a close friend … Why me? Isn’t this terrible? What are we going to do? … and the friend said something like, “Well, it certainly would have been a lot simpler for you if he hadn’t been born!”

Mom said that this was a crucial moment that “snapped her out of” her spiral of grief and regret, and refocused her on her love for me as her child, and on the future and what needed to be done.

I’m not sure how I feel about this today, but I remember that at the time I felt really good hearing the story.  For some reason, it satisfied a lot of my questions. I guess the incident must have settled most of Mom's questions, too, or at least made them manageable.

Years later, Mom told me about a similar turning point for her that happened in a similar way. When I started college, I had just gone through a really terrible medical crisis. My recovery from that coincided exactly with the start of my Freshman year. I was at college far from what was then home (Olympia, Washington), and my Mom was there, staying in an apartment near the college. It hadn’t been part of her plan or anyone else’s to stay with me, but she was because like I said, I had just gone through like two months of weird medical problems and hospital stays. Apparently, one day she was talking on the phone to one of her friends back in Olympia … just a casual conversation at first I guess … and suddenly Mom just started unloading all of her confusion, sadness, and lack of direction. I was doing okay, you see, but she was still stuck in crisis mode. Well, according to Mom, the friend just said, “Claire, come home.”

That was it, I guess. Mom told me about this the very next day, literally in the process of explaining why she was leaving. As I recall, she was gone by the end of the week. Frankly, I was extremely pleased at the time. I couldn’t have found the words or the gumption to tell Mom I didn’t need her around anymore, but that’s exactly how it was. And once again, it took a friend … not a relative, doctor, or counselor ... to tell the simple, honest truth in a way that my Mom could digest.

Unless I’m mistaken, Mom and Dad never connected with any sort of disability / parents community. I think they saw it as too “touchy-feely” or something. I wonder, if I’d been born in 1997 instead of 1967, would they have read “special needs” blogs like Love That Max? I feel like that might have been more likely, as blogs allow the option of participating anonymously. Plus, they both loved reading.

Seeing in these blogs how continuous the difficulties of parents with disabled children are, I also realize that they can’t really be solved with a moment of tough love from a friend. Yet, I also sometimes think that’s exactly what more of these parents ... and their disabled children ... need.

Wednesday, November 20, 2013

Video Of The Day

For both informational and entertainment value, this is AmputeeOT’s best video in quite awhile!



I confess, I kind of enjoyed seeing her struggle a bit. Usually, her videos show her being ultra-competent and totally on top of things.

Incidentally, one of the YouTube commenters for this video said that it was “inspirational”. That gave me another little insight into why so many of us hate the word “inspirational” when applied to disabled people and the stuff we do. It’s inappropriate. It is the right general tone … positive … but the wrong word for what we’ve actually seen. This video is many good things, but “inspirational”? Not really. Choosing the wrong word really wouldn’t be a big deal, either, except it suggests that the reaction is more of a reflex than an appreciation … that the person wasn’t really paying attention.

Misery Calculator, Revisited

I’ve simplified my “Misery Calculator” the rating system I was playing around with in early October to try and figure out how a person with disabilities can map out the medical and social factors that make up their disability experience. There are now six measures, three “Medical” (internal) and three “Social” (external):

Medical

Physical / “Spoons” … physical disabilities and / or physical stamina and wellness.
Mental / Cognitive … mental health and / or cognitive functioning.
Sickness … acute illness separate from a disability (i.e., a cold or flu)

Social

Physical Barriers … building accessibility, transportation.
Tools & Resources … adaptive equipment, personal assistance, money.
Ableism … prejudice, discrimination, annoying things people say.

The idea is to give each measure a number value between 0 and 5 … 0 being “no problem at all” and 5 being “absolutely terrible”, or something like that.

This provides two measures of the disability experience: 1) Total Misery Level (total of all scores, compared to the total possible score of 30), and the Medical / Social Ratio (how much of your Misery Level is from “Medical" factors and how much from external “Social" factors.

Here’s me, as of today:
For me, my physical condition makes up the lion's share of my total disability experience, though social factors are part of the picture. Also, my disability overall is sort of in the middle ... less severe than many and more severe than some.

Understand that this isn't exactly the breakdown you'd find in every disabled person. The point is that each person's profile is going to be different. One reason why many of us emphasize the "Social" aspects of disability is that for a lot of people, they are more significant than their actual medical conditions. For instance, I can easily envision a paraplegic who is otherwise healthy and emotionally happy, for whom the biggest problems are in the architectural barriers she runs into, peoples' awkwardness around her, and maybe reduced job opportunities due to discrimination.

Another difference among us is that I'm sure some of us will have the same or similar ratings from week to week, month to month, while others might fluctuate quite a lot. And of course, we all go through days when the "Social" barriers all seem to crop up at once ... the days when you are fine, but you probably should have stayed in bed.

Tuesday, November 19, 2013

Here's The Thing ...

There's not much point in making something "almost" accessible.

My Obamacare Experience, Part II

I said back in early October that I would document my Obamacare experience, so here's the next installment.

A few days ago, I went back to New York State's Insurance Exchange website, nystateofhealth.ny.gov. I found that the account I wasn't sure I'd properly set up in early October, was set up properly. I then started a full trip through the website to find out what I might qualify for, given my slightly unusual situation. So far, everything has worked out fine, and I have a pretty good idea of what's going to happen with my health insurance.

First, I'll continue with a slightly different plan that my former employer has chosen, which I'll pay for through the COBRA provisions. Sometime in January or February, if the information I have is correct, I'll move over to Medicaid, which I will stay with unless and until I find a job that ups my income sufficiently and / or provides better coverage. Given the breadth of Medicaid coverage in New York, it may be hard to find a better policy for any price, but you never know.

My conclusions? Speaking only for myself ...

1. New York’s Exchange website worked fine, supported by a helpful and fairly quick phone call when I had trouble understanding one of the questions put to me.

2. It looks like I have marginally more choices in health insurance now than I've ever had before, more possible contingency plans should my employment or money situation change, and a confidence I never had before that my health insurance ... which is absolutely essential to my survival ... will no longer depend on my employment status.

By the way, I once again recommend following Sarah Kliff’s daily updates on the Affordable Care Act, at Washington Post’s Wonkblog. Her reports are easy to understand, sober, and in-depth.

"Should I Stay Or Should I Go?"


advocacy topic icon
That Crazy Cripple Chick - November 12, 2013

Bad Cripple - November 17, 2013

Megan Rogers, Inside Higher Ed - November 19, 2013

Ellen Seidman, Love That Max: Special Needs Blog - November 19, 2013

I’ve read four pieces on accessibility failures in just the last week. That may not sound like many, but it is unusual. Most disability-related stories and blog posts aren’t specifically about accessibility, so this many in such a short time looks like a mini-trend. At any rate, reading them one after the other, I think you’ll find the same themes cropping up.

Of course, the most obvious is that businesses and other public spaces are still not as wheelchair accessible as they should be. The only thing that amazes me more than this is the number of people who are amazed by this. I can’t tell you how many non-disabled people have told me about trying to have dinner at a restaurant with a disabled relative, and asking me, without irony, “Didn’t the ADA require all places to be accessible long ago?” Welcome to our world!

What's really got me thinking though is the variety of ways people respond to accessibility barriers. The person in the first article wrote a letter to convention organizers. The second left the conference to which he’d been personally invited. In a followup, we see that this person did follow up and got some response from the organizers, though their stated action plan seems to me to leave plenty of room for further procrastination and excuse-making. Then we have a mother who comes at the issue from a different angle. As a parent, she’s in some ways more distant from the issue, and at the same time potentially more fierce in her response.

album cover of The Clash - Combat Rock
When I think about what’s the “right” response to lack of accessibility, I’m reminded of that line from that song by The Clash:

"Should I stay or should I go now?
If I go there will be trouble,
If I stay it will be double."

Is it better to leave the place and follow up later, or stay and make your point on the scene, publicly? I think a lot depends on the person, which methods work best for them and fit their personalities. It would have been interesting if William Peace (a.k.a. “Bad Cripple”) had stayed at the conference and called the organizers out for their … no other word for it … stupidity. But I trust he knew himself, and perhaps knew his audience too, and did the best, most effective thing for the occasion. Becki, Izabella’s mother, had other concerns and arguably more at stake. If she’d basically boycotted her child’s pageant, her child would have suffered even more, and at four years old is probably too young to understand the trade-offs and sacrifices involved in self-advocacy.

Every situation and every person is different, but we all have to grapple with the same questions. Am I being unreasonable? Is the access that’s there “good enough”, even if it isn’t perfect? Am I good with confrontation? Can I keep my cool while making a strong impression? Can I even afford to leave and try somewhere else right now? Am I advocating for myself, for now, or for the next visitor with a disability … for posterity? Is the problem a truly "innocent" mistake, or should this person or organization really know better? Does it matter?

And of course, will I live to see a day when this kind of situation is truly rare?

Monday, November 18, 2013

Photo Of The Day

small boy in wheelchair, man crouched down, playing flute for the boy
From the Disability Curious Tumblr blog. (Child & Flutist)

Disability News

News topic icon
Lucy Berrington, Psychology Today - November 14, 2013

This is a very good primer on the Autism Speaks controversy. I like the way it is structured around the kinds of questions people unfamiliar with the issue are likely to ask. This is the kind of issue outline that should be prepared for all sorts of disability issues that get mainstream media attention. It’s right to complain about journalists’ ignorance of disability issues, but it’s also probably up to us to educate them.

Bob Greene, CNN - November 17, 2013

I honestly thought when I started reading this article that the disabled man was going to turn out to have been killed, maimed, or tortured. I’ll bet he was scared to death, and probably felt extra humiliated because he was targeted for his disability. But, I can’t help feeling that Bob Greene’s tone in the article just doesn’t match the actual severity of what happened. The man was robbed, but he wasn’t injured. I know that’s not saying much, but it’s not nothing. Maybe I’m just naturally contrary about these stories, but I see evidence of a story about a significantly disabled man who lives independently, has full mobility in society, and who is taking a rare but not unheard-of misfortune of city life … a mugging … in stride. Yes, he was targeted because of his disability, but there’s nothing in the article that suggests it was anything like a “hate crime”. I feel bad for the man, and I do think it’s pretty low to target a person in a wheelchair this way, but sorry, I don’t get the “revulsion”.

Ableism In A Nutshell

I’m re-watching the early seasons of “Downton Abbey”, the ITV / PBS series that takes place in England in the ten or so years after 1912. In Season 2, a main character has a spinal cord injury from fighting in World War I. He’s being pushed around the big estate’s grounds in his wheelchair, by his on / off, will they / won’t they lover.

He, the disabled man, says, “I’m strong enough to push myself.” She, the non-disabled woman replies, “I’ll be the judge of that.”

It’s a tossed-off line, not the start of an argument, not even a mild one. It’s just something they say. But what a pure, distilled example of one of the main forms of ableism.

Saturday, November 16, 2013

Photo Of The Day

From the Wheeliewifee Tumblr blog

Daily Doses

I don’t only visit disability blogs and websites. I also have a list of other sites I read pretty much every day …

Press-Republican … My hometown newspaper.

Wonkblog ... Part of the Washington Post website, Wonkblog offers several posts a day on current events, with a greater focus on policy, data, and how things actually work than most editorial blogs. It's a good place to find simple yet thorough "explainer" articles on current hot topics in the news. They also manage to maintain a fairly lighthearted style, while never trivializing important issues. Wonkblog is worth a look for it's coverage of the Affordable Care Act alone.

Salon.com … I’ve been reading this online magazine since the mid 1990s, though I find myself appreciating it a little less these days. I read Salon for its coverage of politics and cultural trends, and for a few of it's columnists, such as Alex Pareene and Joan Walsh.

Eschaton … I admire blogger Duncan Black’s brief style, (which pre-dates Twitter), and generally agree with his political views. He’s especially good at getting to the heart of complex issues, and isn’t afraid to repeat himself, especially ideas that don’t get enough airing.

Matthew Yglesias … A good blogger on economics from a Democratic / moderately liberal perspective. Like most of the other bloggers at Slate, he likes to explore seemingly counter-intuitive, but possibly valid ideas.

Ta-Nehisi Coates … I’m not particularly well read on issues of race, but for what my opinion's worth, Coates is far and away the most exciting, challenging, poetic writer on race, ethnicity, and gender I’ve ever read. I also find that his writings on race have affected my understanding of disability, even though as far as I know, he has never written about disability.

Balloon Juice … An important aspect of the blog’s history is that it’s founder, John Cole, started the blog in the early 2000’s as a staunch Republican, rabid Bush supporter, and loud defender of the Iraq War. You wouldn’t know it now, except that Cole applies the same passion and pugnacity to his writings as a staunchly liberal Democrat. Actually, most of the posts are by an equally excellent slate of bloggers that Cole manages. A good place to learn how to use casual language and an artful touch of crudeness in service of ideas you really care about.

The A.V. Club … My starting point for popular culture of all kinds, and a first stop for reviews on my favorite TV shows.

The Dissolve ... A fairly new website on films of all kinds, both new releases and old classics. If you like movies, and would like to know more about movie history, this is a great site to visit regularly.

What are your favorite daily Internet reads?

Friday, November 15, 2013

Here's The Thing ...

Some images of disabled people are really cool and empowering. Others are sweet and sentimental. Which kind you prefer depends a lot, and says a lot, about your personality.

Test The Disability Bechdel Test

Last Friday I tried to come up with a workable version of the “Bechdel Test” for disability on film and TV. I think I’ve got it now.

To recap, the Bechdel Test is a way to assess the portrayal of women in movies, television, or literature. A work “passes” the Bechdel Test if it:
1) Features at least two women, who
2) Talk to each other,
3) About something other than a man.
So, here’s my proposed Disability Bechdel Test. A work passes if:
1) Characters with disabilities are involved in significant plot developments not centered on their disabilities.
2) Disabilities are depicted realistically, neither less, nor more severe than they would be in real life.
3) Disabled characters are givers as well as receivers … supportive of other characters, not just supported by them.
I couldn’t come up with a test as elegant and unified as the original, but I think these three measures cover a lot of ground. They address important aspects of character, plot, and writing, not a laundry list of pet peeves. They aren’t about either “positive” or “negative" portrayals, they encourage realistic, three-dimensional depictions that allow us to get to “know” people with disabilities, not just react to them. I also think that TV shows and movies that do “pass” this test tend to be the better works overall.

Try this test on your favorite, or not so favorite, disability-themed TV shows and movies. What passes the test and what doesn’t? Next Friday, I’ll test two films, “Forrest Gump” and “My Left Foot”, and two TV shows, “Parenthood” and “Ironside” (both versions!).

Thursday, November 14, 2013

Photo Of The Day

Photo of sleek, sporty-looking lightweight wheelchair

From the Cripple Fabulous Tumblr blog.

Please do click the link to read an example of why the phrase “wheelchair bound” is so inappropriate.

What's The Deal With Autism Speaks?

Reblog by Sunshine, been keeping me up for days - November 14, 2013

This is the best collection of reputable links that explain why many people are upset with the well-known autism charity, Autism Speaks … that’s the organization whose logo is a blue puzzle piece. I particularly recommend the letter by John Elder Robison, in which he resigns from the Board of Directors of Autism Speaks. Criticism of the organization is particularly intense right now, because Autism Speaks is hosting a conference and Washington, DC lobbying effort this week.

I am not autistic. I don’t have children or other relatives who are autistic (that I know of). So why am I interested in this?

I think it’s important for as many people as possible to know that the nation’s most recognized autism charity has a very particular point of view that a great many people don’t agree with. It isn’t uncontroversial. You can support it’s goals and tactics if you agree with them, but don’t assume that because it’s about autism, and they have charity walks and things, that it must be good.

I think it’s important to hold all disability charities and organizations to a rigorous standard of conduct, and ask whether its goals and tactics are close enough to your views to support it.

I think that the debates between different understandings of autism provide important insight into the different ways all disabilities are experienced and understood.

Plenty of people without autism or a direct connection to autistic people support Autism Speaks. So, I don’t think it’s any more presumptuous for me to oppose Autism Speaks, or support an alternative autism organization I like better.

There IS at least one autism organization that I believe represents a better alternative to Autism Speaks … The Autistic Self Advocacy Network.

The resignation letter is beautifully written. It is also strong without being rancorous. Despite my lack of personal connection to autism, the letter moved me, particularly as a person with disabilities.

Survey

Andrea Shettle's Tumblr blog - November 14, 2013

This is a "signal boost" for a potentially valuable survey on employment and people with disabilities. I did it, and I encourage my readers to do so as well, especially those who have disabilities.

Nothing To Say Today!

stories topic icon
I find myself at a loss for a story to tell this week. For some reason my childhood and youth feel very dull to me at the moment. I’m sure next week I’ll have something worth reading.

Wednesday, November 13, 2013

Photo Of The Day

adaptive toilet seat with side handles for easy sitting and standing
From the Livingwithdisability Tumblr blog.

Advice For The Non-Disabled

Ideas topic icon
Sooner or later, anyone who writes or speaks on disability issues is going to try making a numbered list of "commandments" or "advice" on how non-disabled people should treat people with disabilities. I’ll give it a go:

1. When you meet someone with a disability who you're going to need to get to know ... like a coworker, likely frequent customer, or close neighbor ... make it your initial goal to find out the main interesting thing about the person, other than their disability. This is the thing ... whatever it is for each person ... that you normally would forever after associate with that person if it wasn't for their disability. Once you find out what that thing, is, you'll probably find that that is what you associate the person with rather than their disability.

2. When you reach that point, good on you! But please, don't tell your new friend, "I don't even think of your disability anymore!" When you have a disability, it's always an important part of you, even if it isn't the only interesting thing about you. It's not helpful when people forget about it, and it's not a compliment either ... like ignoring an enormous zit. A disability isn't an ugly blemish you need to "get past", it's part of the person you are getting to know. The goal isn't to "forget" it, but to put it into perspective. Still don't get it? Okay, would it be cool for a white person to say to an African-American person they've become friends with, "I just don't think of you as Black anymore!"? I know some people really would, But I hope you wouldn't. It's the same with disability.

3. People with disabilities are incredibly diverse. We don't all have agreed upon positions on everything disability-related. For convenience, I like to divide the disability community into Jocks and Nerds ... or sunny optimists and tortured, intellectual pessimists. There are activists and conciliators. There are people who really hope for a medical cure for their condition, and there are those who mainly strive for better practical tools and social justice. There are people born with their disabilities and those who came into them later in life. There are people with no income other than SSI, and there are rich disabled people ... and their concerns can often be quite different. There are disabled people who look conventionally attractive, and there are those who are beautiful in ways that take imagination and an open mind. There are disabled people with the resources and tools to be highly functional, and there are those who struggle every day just to survive. This isn't an instruction or piece of advice, it's just something to know and not forget.

4. Many of us disabled people try to project a "can-do" image of ourselves and our community. There are good strategic reasons to do this, and it's not false, but it usually isn't the whole story. The one negative thing you need to remember about having a disability is that it is exhausting. The most commonly used explanation for this is the “Spoon Theory”, but I’ve got another analogy I think might be easier to understand. Think about how tiring air travel is. It’s physically wearing and … this is key … mentally exhausting. Well, that’s what a lot of our everyday errands around town are like. The air travel analogy is even more apt when considering disabled people who don’t drive, who rely on buses, taxis, or rides from friends and family. Any of these at any time can turn out to be late, or not accessible. Destinations, too, often turn out to be inaccessible, even when we’ve called ahead and been told that they are accessible. And every late bus, every inaccessible place, every wasted trip is twice as hard and tiring for us as it is for the average non-disabled person. Life with a disability is extra tiring, even when everything goes perfectly. When things fall apart, it can be really, really hard for us to hold ourselves together.

5. Exhaustion is the number one reason why we care so much about accessibility and adaptation throughout the community, and why we sometimes "lose it" when things don't work the way they're supposed to. The key thing to understand here is that accessibility is pretty much an either-or proposition. There aren’t many gray areas. A little step, or “just a few” steps is just as much of a barrier to a wheelchair, or someone unsteady on their feet, as 12 flights of steps. A bathroom stall that’s 2 inches too narrow isn’t “almost” good enough. 2 inches too narrow is just too narrow … you can’t get through. That’s why we sometimes seem overly nit-picky and unwilling to compromise. When it comes to accessible design, there’s really not much point in splitting the difference, and we kind of have to insist on things being designed or adapted in a certain way, otherwise there’s no point in even trying.

The bottom line to all of this is that when you are dealing with someone who has a disability, the best gift you can give is patience. Patience with our way of doing things, and patience with our need to vent once in awhile. It’s a small thing you can do that really can make our lives a lot more bearable.

Tuesday, November 12, 2013

Photo Of The Day

From the Disability Curious Tumblr blog.

Advocacy Updates

Advocacy topic icon
Andrea Shettle’s Tumblr - November 12, 2013

More calls needed today for ratification of the UN Convention on the Rights of Persons with Disabilities, (CRPD). Call:

Senator Corker at 202-224-3344
Senator Menendez at 202-224-4744

For complete information on the Disability Treaty, updates, and advocacy tips, visit http://www.disabilitytreaty.org.

As it says in this update, “This is a marathon - not a sprint.”

Crazy Crip Girl - November 12, 2013

A few weeks ago I posted about someone I’ve been following on Tumblr, who left her supermarket job because of her employer’s mishandling and ultimate denial of simple accommodations to deal with an accessibility problem they created. There’s good news to report:
"I’ve since found a new job. I’m currently in my training week. Their registers aren’t accessible, but they allow me to transfer to swivel stool when I’m at the register so it works out very well. I also get discounts, free food (no seriously), and paid lunch breaks.”
Getting a better job so soon isn’t precisely an example of successful advocacy, but it’s really a spectacular example of the fact that proper accessibility and accommodation are often truly a matter of choices, priorities, and attitudes. These two supermarkets probably deal with the same underlying physical conditions, but seemingly have opposite approaches to them. One is all about avoidance and narrow-minded thinking. The other is about common sense and flexibility. It would be great if some publicity could come out of this so the public could see how accessibility and accommodation can and should be done.

Monday, November 11, 2013

Talk About It

Chavistory’s Notebook - November 1, 2013

This is the most clear and concise discussion of something I've felt very strongly about for a long time ... when and how to discuss kids' disabilities with them. The writer is talking about autism, but I think it applies equally well for just about any kind of physical or mental disabilities. Teachers should read this, too.

The ideas here help explain why I felt so uncomfortable with the episode of "Parenthood" where Max's parents suffer over Max finding out he's got Asberger's Syndrome. Spoiler: they are way, way more torn up about it than Max is.

Disability News

News topic icon
Steve Vogel, Washington Post - November 10, 2013

This is a surprisingly sympathetic profile of Gen. Eric Shinseki, Secretary of the Department of Veterans Affairs. Maybe it’s a puff piece, but even with that possibility in mind, this article left me admiring Gen. Shinseki, and optimistic that the VA’s well-known problems might actually be on the way to being fixed. If nothing else, it sounds like Shinseki has good policy instincts that are firmly on the side of helping veterans, rather than guarding the bureaucracy. The irony is that if Shinseki was more of a gate-keeper, he’d probably be less publicly criticized.

Marc Santora and Benjamin Weiser, New York Times - November 7, 2013

Robert Lewis, NPR - November 9, 2013

I can easily imagine the average non-disabled reader wondering how in hell any city is supposed to handle disabled people in a natural disaster. The thing is, it’s probably going to end up being a few fairly simple steps that just get forgotten … like mobilizing wheelchair-accessible buses. It’s amazing how often otherwise intelligent people forget to think of basic transportation for people with disabilities who can’t ride in any old vehicle and don't own their own adapted vans. They have no concept of how limiting it is to a person’s mobility, and to their ability to take responsibility for their own safety. As for not being able to leave a building because of out-of-order elevators, I’m not sure what the fix for that is. Hopefully, with this court ruling and a new city administration coming in, disability advocates and city officials will actually work together to come up with practical solutions. Just repeating, "It's too hard, it can't be done" won't accomplish anything.

Sunday, November 10, 2013

Photo Of The Day

Pakistani man just after throwing, balancing on end of a crutch, playing cricket
From the Disability Curious Tumblr blog.

Disability Jocks and Nerds



I’m posting this video of John Hodgman speaking at the 2009 Television and Radio Correspondent’s Dinner for two reasons.

First, it’s funny and surprisingly touching, especially if you still have some affection left for President Obama. Second, it’s the the most clear and insightful discussion I’ve ever seen of “Jocks” and “Nerds”. And that’s important because I am coming to think that some of the divisions within the disability community parallel the Jock / Nerd divide.

While there are dozens of categories and subcategories within the disability community, I think we can see that there are two rough but recognizable approaches to disability as a topic and an experience … approaches that could be described as Jock and Nerd.

Disability “Jocks” are generally optimistic, gregarious, and practical. They mostly project a “can-do” attitude. Even their approach to disability prejudice and injustice is positive; a little education, a few policy changes, some more barrier removal and everything will be fine!

Then there are the Nerds, who are more introspective, a bit dour, less interested in being “just like everyone else”, and more aware of being a distinct subculture. Disability “Nerds” don’t just embrace the “social model” of disability, they disassemble it, reassemble it, and examine it from every angle. They dig into the experience of disability on every level. Like the Jocks, the Nerds experience injustice and want to correct it, but they tend to view ableism as deeply rooted and often intentional, not just a series of misunderstandings and policy tweaks.

I think this can help explain at least some of the “disabled on disabled” conflict we see in the broader disability community. Disability Nerds are uncomfortable with the seemingly relentless positivity of the Disability Jocks. The Disability Jocks get sick of the Disability Nerds’ obsession with terminology and harping on the negative all the time. Nerds think Jocks are too concerned with “acting normal”. Jocks think Nerds are too caught up in abstract theories of identity and justice.

I could keep going with this, examining how social class, income stability, and disability from birth vs. disabled later in life factor in, but I’ll stop for now and ask, is this idea helpful? Am I onto something? Also, are you a Disability Jock or a Disability Nerd?