Thursday, February 20, 2014

Winter Paralympics Schedule

Sochi.ru 2014 Paralympic Games logo
United States Olympic Committee - February 19, 2014

There will be relatively little on-air coverage of the Winter Paralympic Games, but I prefer to see the 52 hours of total coverage as a “glass half full” situation. Most importantly, the link above takes you to very good, easy to decipher charts showing exactly when and where you can watch live or taped broadcasts of each sport. It looks like the Opening Ceremony, several Sled Hockey games, and the Wheelchair Curling Final will all be shown during the day, and that NBC Sports Network will be doing a highlights show for each day of competition. Of course, you can see a bit of everything, mostly on NBC Sports Network, if you’re willing to get up in the middle of the night or super early in the morning.

NBC seems to be completely committed to the “human interest” approach to Olympic sports. It will be interesting to see if covering nothing but disabled athletes induces a full-on diabetic coma in all of the commentators. Or, will they go the other way and depict all the competitors as hard-bitten, fearless bad-asses?

Disability Rights In Russia: Video

Disability Rights In Russia

Photo of a woman with blonde, short, curly hair, facing the camera, sitting in a wheelchair
I saw this photo earlier this week, on the Disabled People Are Sexy Tumblr blog, and traced it to a Human Right Watch website on the disability rights movement in Russia. I set the photo aside and added the Human Rights Watch links to my link queue to read later.

I’ve been thinking a bit about the perception of Russia, prompted mostly by the Winter Olympics in Sochi, but also by Russia’s recently passed anti-gay laws, and more broadly, by the sort of back and forth confusion in Americans’ attitudes towards Russia I have seen since the end of the Cold War and the dissolution of the Soviet Union.

For one thing, people on opposite sides of the political spectrum in the U.S. have almost swapped sides in regard to Russia. American Conservatives spent the latter years of the Cold War trying to convince Liberals that Russia was the worst country in the world. Not only did they espouse the hated ideology of Communism, but as a people they were supposedly ugly, brutal, and backward. “All they respect is power!” we were told. Liberals, on the other hand, tended to try and reach out to Russia, to appreciate their history and literature, to put the Communist Revolution in historical context. We almost took the human rights problem for granted ... if not quite forgiven, then maybe a little excused.

Now, with Communism gone, some Conservatives seem to have a crush on Russia's current strongman, Vladimir Putin … he’s kind of a bad-ass, I guess. I, a Liberal watch Cossack policemen beating and whipping the brave but obviously unthreatening young women of Pussy Riot and really wonder, in a different way than Sting did in the ‘80s, whether, in fact “the Russians love their children too?”

All of which is just to say that I approached the topic of disability rights in Russia with all kinds of conflicting feelings, not all of them noble or fair. In short, I expected horror stories and ignorance in triple doses. What I’ve seen so far is more complicated.

With about half of the problems mentioned in the article, video, and website linked below … such as "Public buildings and transportation are often inaccessible” ... I thought, “That’s not so different from here in the U.S!” The other half, I thought, “Okay, that’s pretty bad. I don’t think that happens here … much.” We still see segregation into “special” classes in our schools, but a lot more than 2% of them are inclusive, mixing disabled and non-disabled students. And although peoples’ feelings and ideas about sexuality and reproduction can still be frighteningly discriminatory in the U.S., enforced abortion and sterilization are no longer considered anything like acceptable.

Still, the basic landscape and map of issues is pretty much the same in Russia as it is here. They need more buildings and public spaces to be accessible. Education needs to improve. People have negative attitudes towards people with disabilities that result in sometimes shocking acts of discrimination. It all sounds familiar. It’s just that it also sounds like Russia is maybe 20 to 30 years behind us on most things. That’s pretty awful for disabled people in Russia, but I’m not sure it’s boycott-worthy, or justifies any feeling of great American superiority on disability rights.

Except there’s one thing Russia has going for it that we don’t. Russia has signed the UN Convention on the Rights of Persons with Disabilities, and the United States hasn’t.

I have occasionally wondered whether the CRPD really matters anyway, since there is little anyone can do to enforce it in countries that sign it. It might be a cheap way for countries to score “credit” for being progressive on disability rights, without actually having to do anything about them. Having read more about the movement in Russia, however, I think the CRPD provides a valuable tool to compare words with deeds in a country that, leftover Cold War prejudices aside, does seem to have a problem following through on all the details of being part of the modern, democratic, egalitarian world. The CRPD provides a standard for Russia to meet. And, after all, unlike the pronouncements of the U.S. State Department, the UN Convention is something Russia chose to sign, so it will be hard for them to claim that disability rights measures are foreign impositions, incompatible with Russian culture and traditions.

I look forward to learning more about disability rights in Russia, a subject which should really be about people with disabilities in Russia, not about which country can claim moral superiority on disability rights issues. Maybe we’ll learn more when the Winter Paralympic Games start in March.

Wednesday, February 19, 2014

Photo Of The Day

Photo of a young woman with short brown hair and glasses, wearing a tan trench coat and business attire, sitting in an electric wheelchair
From the Wheelingalon24 Tumblr blog.

Policy Changes I'd Like To See ...

Ideas topic icon
Just thinking here ...

1. Allow people with disabilities who qualify for home care / personal assistance services to hire anyone they want to provide the services they need. They could hire an agency with lots of screening and training of employees, and that handles all the wages, taxes, and other administrative stuff. Or, they could hire friends, neighbors, college students, people who need work, or even family members … train them, supervise them, fire them if necessary, and pay them with the same money that would have been spent anyway for more traditional models of home care. Pieces of this type of “consumer-directed” personal care model are already in place in various states, but specific policies and practices are all over the place, and in many areas nothing like it is available at all.

2. Replace a lot of the current programs geared towards helping disabled people do specific kinds of things, with an annual grant of money that each person could use for whatever they want. This would be separate from income assistance like SSI and Disability, which is intended to help with everyday living expense for people who can’t work. These grants would be available to anyone with a disability that results in the need to spend substantial amounts on services and investments that non-disabled people never have to make. These could include things like home accessibility modifications, electric wheelchairs, (and / or wheelchair repairs), extra personal care or assistance, (either replacing home care completely, or supplementing it for help that lies outside the purview of home care), or vehicle adaptations. The amount of each person’s grant would be based on some kind of agreed upon list of expenses presented by the person each year, but the money could be spent however the person wanted, and there would be no more available until the following year, no matter what. So, there would be plenty of incentive for each individual to spend the money wisely, on real disability-related needs.

3. Raise the asset limit qualification for SSI and other government support benefits. I would raise it quite high, but I wouldn’t remove the limit altogether. Let’s say $100,000. In other words, assuming your ongoing income is low, you could still qualify for various benefits as a person with a disability if you had up to $100,000 in savings. This would encourage people with disabilities to work when work opportunities exist, and encourage them to save for retirement or anticipated big expenses.

4. Create a disability-based tax credit. This would be one way to deliver an annual benefit payment for major disability-related expenses. Except this would be even simpler and less individualized. Just decide a dollar amount for the credit, set an upper income limit if lawmakers thought that was necessary, (I would set it fairly high), and figure out a way for individuals to prove their qualifying disability. That last bit might be the hardest part of all to carry out, but this is another way to provide consumer-directed support and economic empowerment. It could also be designed so that you could only get it if you worked, making it another way to counteract work “disincentives” and make working worthwhile.

One thing all these ideas have in common is that they involve giving people with disabilities money, as a distinct alternative to giving them "programs". Give us money, and we will buy the support we feel we need, whatever that might be. For what it’s worth, “just giving poor people money” isn’t such a radical idea. A fair number of reputable economists think it’s a good idea. Also, it’s worth thinking carefully about what might be a likely objection to these ideas … variations on the theme that we can’t be trusted to be either honest enough or competent enough to handle these benefits properly. Some of us might, indeed, need some help with that, but do we really want so say that higher material needs means people with disabilities need more paperwork and “professional” supervision?

I think it’s worth thinking about.

Tuesday, February 18, 2014

Discussing TV's Disability Problems

Picture of an old-style TV with the wheelchair symbol on the screen
I was listening yesterday to this week’s episode of the Firewall & Iceberg Podcast, a TV review podcast by Alan Sepinwall and Dan Feinberg. One of the shows they discussed was the upcoming NBC sitcom, “Growing Up Fisher”. The show is about a father who is blind, as told by his son. It borrows a bit from “The Wonder Years”, as the son narrates a lot in voiceover as an grown adult remembering his childhood. The father is played by J. K. Simmons, not a blind person himself (yet again), but a pretty excellent comic actor. Jenna Elfman plays his wife.

One tidbit I picked up that I hadn’t heard before is that on the show, the father is said to have spent a good portion of his professional life hiding his blindness, and is now, for a variety of reasons I guess, starting to be more open about his blindness. I don’t know if this is a good idea or a terrible one.

What really interested me though was that both Sepinwall and Feinberg don’t like the show. They don’t hate it, but they are unimpressed. Mostly it’s because like a lot of recently failed network sitcoms, it’s bland and generic. But then one of them (I’m not sure which) said something telling. To paraphrase … The comedy might have been funnier and more notable if they’d done more jokes about the father’s blindness, but that would have run the risk of justifiably offending people. So, the writers soft-pedal the “blind jokes”, thereby avoiding offending people, but also leaving a possible source of stronger humor untapped.

To me, this suggests three things about disability on TV:

1. TV writers have a hard time making disability depictions distinctive and interesting, while avoiding offense. This may be because they don’t have enough direct disability experience, so they don’t really understand what’s interesting what’s offensive to actual people with disabilities.

2. Not casting actors with disabilities to play disabled characters isn’t just a problem of “representation” or “equal opportunity”, it may actually produce inferior TV shows.

3. We may not see a really great disability depiction on TV until one of the great TV auteurs pitches a show with disabled main characters to one of the cable channels like HBO, AMC, or FX.

Then again, maybe the problem is that TV reviewers don't understand disability depictions.

Video Of The Day


My Gimpy Life
Episode 6 - Day Jobs

The Difference Between "Awww" and "Awesome!"

Maggie Freleng, Huffington Post - February 12, 2014

Brittany Talarico, People Magazine - January 28, 2014

Rachel Cohen-Rottenberg, Disability And Representation - February 6, 2014


Both the concept of “Inspiration Porn”, and a parallel interest in rethinking standards of beauty and sexuality are lively topics in the disability community, and starting to gain some attention in the culture at large. So, an apparent contradiction is becoming impossible to ignore. Why do some photos of disabled people make us roll our eyes and gag, while others we blog and reblog because they’re “awesome”?

I have explored this before. For one thing, I still think that captions and slogans make a big difference. A picture without comment allows us to decide for ourselves what it “means”. Captions instruct us to feel a certain way about what’s in the photo, and usually, the caption is sentimental, shallow, or both. Occasionally, a caption will hit that sweet spot where well-meaning and offensive overlap perfectly. As hard as it is for someone to resist sharing their brilliant insights (believe me, I know), captions almost always turn otherwise cool or interesting photos into “Inspiration Porn".

The source of disability photos, and their intended audience matters, too. When a disability photo comes from a non-disabled person, and is aimed mainly at non-disabled viewers, it tends to look like “Inspiration Porn”. When a disability photo is posted by a disabled person, and / or is aimed mainly at other disabled people, it tends to feel different … more “empowering” than “inspiring”.

The exact intended message, (or apparent message) also counts. In “Inspiration Porn”, the message is often something like, “You think your life is hard, look at this person. He has these horrible disabilities yet he’s happy and successful!” This is based on the assumption that disability is always awful, so a person “suffering” from it who looks capable, attractive, and happy must be a remarkable person … someone to emulate. A related theme is that disabled people are assumed to be depressed and depressing, so seeing a happy, attractive disabled person is meant to be a surprise.

Fashion photos with disabled models and photo essays exploring the beauty and sexuality of disabled people also depend on confounding stereotypical expectations. “Awesome” and “empowering” photos are probably, if we are honest, distant cousins to “Inspiration Porn.” Yet, that’s not the effect they have on us, especially those of us with disabilities.

Danielle Sheypuk, the first model in a wheelchair to take part in New York Fashion Week a few weeks ago, (article linked above), says of disabled people being models in the fashion industry, "People with disabilities need to see it. It's a confidence booster.” I don’t know what effect these photos have on non-disabled people. I don’t even care, because I’m too engaged, too proud and moved, too busy rethinking my own body image and standards of what I have always considered attractive. Meanwhile, the Diesel ad featuring Jillian Mercado has been reblogged pretty constantly on my Tumblr Dashboard since the campaign came out. At least some of these same rebloggers have shown in other posts that they hate "Inspiration Porn", so the Mercado pictures obviously don't strike them that way.

One thing that Sheypuk and Mercado's projects have in common is that neither woman is "playing at" being models and looking fierce and gorgeous. They look totally natural in their clothes, makeup, and hairdos ... not made up like a Halloween costume or worse, someone who's been given some kind of "Make A Wish" experience. And the same is true of the men and women I've seen photos of in other body image photo projects, including people who's photos confront and directly challenge mainstream standards of beauty. These people aren't fooling, pretending, or being manipulated.

These are subtle differences, but important ones. Maybe they're as simple as the difference between "Awww!" and "Awesome!"  I’m sure sure we haven’t gotten close to figuring it all out yet.

Meanwhile, back to “Inspiration Porn” …

Rachel Cohen-Rottenberg of the Disability And Representation blog recently posted an hilarious series of reverse-inspiration porn photos, arranged to look exactly like the worst (and most common) Internet-shared disability pictures with “inspirational” captions … except that instead of disabled people, they show “normal” people, and the captions describe “normalcy” exactly the way disability is usually described. Even people who generally fall for “Inspiration Porn” without question will likely see the opposite point if they look at these tongue-in-cheek but very serious posters.

Finally, if anyone out there still questions whether we disabled people are being hypocritical about this … condemning “Inspiration Porn” one minute, posting “awesome” photos of sexy wheelchair users or amputee mountain climbers the next … I fall back on Walt Whitman to explain:
“Do I contradict myself? Very well then, I contradict myself, I am large, I contain multitudes.”
— Walt Whitman, “Song Of Myself"

Monday, February 17, 2014

Photo Of The Day

Three young men, all of them one-leg amputees using crutches, playing soccer
From the The Perks Of Being Disabled Tumblr blog.

What Will We Tell The Children?

Orli, Just Breathe - February 11, 2014

When I first saw this blog post, I immediately put it into my “to read” queue, because I’m fascinated by the question of when and how to explain to kids with disabilities about their disabilities.

I think it is one of the most important questions about raising kids with disabilities. In all honesty, it is a very emotional question to me, too. One of the few aspects of disability that has really upset me is when I have met children or youth with disabilities who did not seem to know much about their disabilities. Aside from not being able to explain them to others, I have felt like that lack of knowledge and understanding greatly undermines their self esteem and sense of mastery. So, I feel upset for them, and angry that for whatever reason they have been kept in the dark. Digging even deeper, I think that for me it’s all about the awful fear that people are thinking and talking about you completely differently than how they interact with you personally … sometimes known as being “two-faced”. To the child, it’s “Yay! You’re so awesome honey! Great job!”, while among people “in the know”, it’s “I’m terrified that she’ll never have a job, never live on her own, will always be like this.”

This is a nightmare scenario to me. Like all nightmares, it’s a distorted fear, exaggerated. But also like nightmares, it’s based on reality. For one thing, whether or not parents decide to discuss their child’s disability honestly with them, it won’t be a secret for long. “The world” will inform them, and not gently or thoughtfully. No matter how we process disability as adults, disability isn’t great news. How do you prefer to get bad news, from a random stranger, or worse, a work colleague you dislike, or from someone you love and who loves you? And just to up the stakes even higher, random strangers and semi-hostile acquaintances often don't tell you whatever the bad news is … they just look at you weird and talk about you behind your back.

Obviously, then, I have a bias in favor of disclosure and honesty about disability with disabled kids, and realistically, it’s the parents’ responsibility. Nobody’s going to do it for you, nor should they.

That said, I am not a parent, and I don’t really know much about the subtleties of how to be honest and informative, at different ages, regarding different kinds and degrees of disability. So that pretty much ends this conversation for me, because I feel like I’ve been presumptuous enough towards parents about this question … all but shaming them into taking a step they may not agree with or that they are justifiably afraid of. It is complex, as the blog post above ably demonstrates.

What I will do is say a bit about how the topic of my disability came into my life. To start with, I cannot remember any single moment when I wasn’t aware on some level that I was “different”. I never was told flat out that I had a disability mainly because I don’t think I needed to. Maybe that’s because physical impairments are easier to identify, and more insistent in their interference with everyday life. Mine were, anyway. I’ll make a guess that the first conversation I took part in about my disability probably involved me, my father, and an Orthopedic Surgeon explaining why I needed an operation, or didn’t need one. I do remember a few other, more weighty and disturbing conversations with my father and mother … one or two after graduating from high school, and a couple after graduating from college. These weren’t about my disabilities per se, but variations on what is probably the usual “What are you going to do with your life / Isn’t it time you grew up?” conversations all parents have eventually with their kids. Only I do remember that my disabilities represented lengthy chapters in those discussions. The issue wasn’t whether I knew I had disabilities, it was whether I really had a clue what that actually meant beyond physical inconveniences and unusual health concerns.

No, I don’t feel like anything was hidden from me. I never actually experienced any shocking revelations that shook meto the core. However, in retrospect I miss some conversations about my disability that never happened, and I wish that some that did happen had happened earlier.

At least that’s what I think now. Who knows, maybe my parents really did do the best that they could, and things actually went as well as they could have. As they say, hindsight is 20/20.

Sunday, February 16, 2014

Photo Of The Day

From the Disabled People Are Sexy Tumblr blog.

Book Club: "The Man He Became", Part Three: "Resurrection", and Conclusions

James Tobin - Simon & Schuster, 2013

Part Three: Resurrection

Part Three charts Roosevelt’s political comeback, beginning with his Democratic Convention speech nominating Al Smith for President in 1924, running for and winning the Governorship of New York, mainly as a way of helping Smith in his second presidential run in 1928, then speeding up his long-range plan and running for President himself in 1932, after the Great Depression sunk the once-popular Republican President Herbert Hoover.

Tobin also describes how Roosevelt “discovered” Warm Springs, Georgia, where mineral hot springs provided a unique and effective environment for rehabilitation of people with Polio. Coming between Roosevelt’s 1924 reintroduction to politics, and his 1928 run for the New York Governorship, the Warm Springs experience helped refine his physical recovery goals, while he pursued an unusually self-directed approach to his rehabilitation.

Main themes of Part Three:

1. Where initially, Roosevelt worked towards and believed in “full recovery”, he later developed the idea that if he could walk with only a cane, then he could return fully to politics. This idea, in turn, evolved into a slightly different goal. Regardless of his actual physical capability, if he could manage his appearance and movements so as to put people at ease, then Roosevelt believed that would be enough for him to return to politics.

2. Roosevelt developed a hybrid of two general approaches to his medical and physical situation. He listened to and took seriously the advice of “traditional” medical and rehabilitation experts, but he felt increasingly empowered to choose from among their approaches the ones that he instinctively liked, and which seemed to work for him and others like him. He became a sort of proto-consumer of health care a lot like people today who chart their own course on medical questions.

3. Roosevelt really always had two kinds of goals … physical and political. At first, his political goals would have to wait for him to achieve physical recovery goals. Eventually, the two goals switched in umportantnce. The need to jump and political opportunity forced Roosevelt to change and even interrupt his physical goals. In the end, he pursued physical rehabilitation mainly in order to achieve political ends, not just because he wanted to walk.

4. Tobin discusses whether Roosevelt sacrificed a more complete physical recovery in order to honor Al Smith’s request that he run for Governor. It seems as though Roosevelt, himself thought so.

5. Because the political calendar is fixed, and recovery goals are rarely met on schedule, politics trumped rehabilitation. Roosevelt had to make his nomination speech in 1924, even though he might not have felt ready, because he was asked, and because the event was going to happen regardless. He had to run for Governor in 1924 because that’s when Al Smith needed him, and because 1928 was an election year … not 1929 or 1930. And he ran for President in 1932 because the incumbent President was unexpectedly weak in that election year, creating a unique opportunity that might not come again. At every step, though he would at first beg off, citing his need for further rehabilitation, Roosevelt took the opportunities that arose.

6. Roosevelt was an exceptionally private man, who preferred not to discuss his disability even with his closest friends and colleagues. However, he was unusually open and curious to discuss disability matters with other people who had Polio, both seeking and later giving advice.

7. Political efforts use Roosevelt’s disability against him failed for many reasons. Some accusations were just too outlandish to ever succeed. But another factor was that first political reporters, and later the public, wanted to buy into a great “comeback” story in which Roosevelt was a hard-working hero. People always like that, but during the Depression, that was exactly the kind of person people were looking for to put the country right. People were predisposed at that time to prefer Roosevelt’s positive narrative to the ugly rumors a few opponents hoped would gain traction.

8. Tobin closes by noting that Roosevelt’s way of improvising approaches to his disability were used again by him to fight the Depression. He explicitly said that rather than push any specific policy or ideology, he felt that the thing to do was try things, evaluate the results, make changes, and try new things. That is exactly how he dealt with Polio.

Conclusions

As I see it, Tobin makes three important points in "The Man He Became":

1. Roosevelt achieved the Presidency not in spite of Polio, but in a way because of it. The ordeal made him both stronger and more empathetic. Previously, he was a promising politician, but considered something of a lightweight and an aloof aristocrat. His constant improvisation in dealing with his disability also became the hallmark of his approach to the Presidency and efforts to combat the Great Depression.

2. From today’s perspective we can see in Roosevelt the beginnings of a new set of beliefs about disability that were more fully developed later … the reduction in stigma, the end of erroneous and superstitious beliefs about disability, and the idea that full physical recovery wasn’t the only way a disabled person could live a productive life. Most of all, Roosevelt short-circuited the equation between illness and disability … between weakness and impairment. After Roosevelt, people could conceive of a person being both disabled and strong.

3. FDR didn’t hide his disability. He did not perpetrate a “deception” as the current conventional wisdom now says. Rather, it was a “performance”. Over time, he developed the idea that he didn’t have to appear to be completely cured to return to politics, as long as he could mostly appear to be strong, and govern his movements so as to put people at ease. Through hard rehabilitation work and embracing some innovative approaches, he gained back enough mobility to do this. People could see that he was “crippled”, but in ways that didn’t worry them.

In addition to these, three other things stood out for me, as a person with a disability:

1. Roosevelt probably would have understood “The Spoon Theory” quite well. Polio, itself, started out as a painful, frightening, exhausting “storm” of an acute illness. Exhaustion and the careful economizing of stamina were forever after daily factors in Roosevelt’s life. Reading Tobin’s descriptions of the disease and the work of Roosevelt’s rehabilitation should cause any disabled or chronically ill person to feel a strong bond with Franklin Roosevelt.

2. I love the fact that while Roosevelt was an extremely private person about his own situation, he actively sought and almost reveled in connections with others who had Polio. He was a natural leader, but he was also a good listener and good learner, whether the teacher was a distinguished doctor or a 15 year old kid who had lived with Polio for longer than he had. Without realizing it, Roosevelt was pioneering “Peer Counseling”, not just as an individual pursuit, but in a more formal way at Warm Springs.

3. “The Man He Became” shows that the story of Franklin Roosevelt’s life with Polio doesn’t perfectly fit anyone’s preconceptions or ideology. It is a story of personal bravery and perseverance, and at times a story of confusion, fear, and trial-and-error. Roosevelt was utterly dedicated to his “recovery”, but he was able to remain so partly because his allowed his concept of recovery to change. I found it interesting that the issue that brought this subject up again in the 1990s … the idea of President Roosevelt in a wheelchair … was in some ways pointless, since he rarely used a wheelchair in his daily routine.

Most of all, I think, I’ll remember Tobin’s beautiful, gripping description of Franklin D. Roosevelt waiting to make his nomination speech for Al Smith at the 1924 Democratic Convention. The crowd's reaction was fascinating, but I was thinking more about Roosevelt himself, sitting there hoping he wouldn’t fall down in front of thousands in Madison Square Garden, and hoping the hell someone had thought to nail down the podium he would lean on to give his speech.

Then, having made it to the lectern, Roosevelt smiles and tosses his head, which would become one of his signature moves, because he can't let go of the podium to wave.

Read all three section reviews:

Weekly Wrap-Up

Disability Thinking - Weekly Wrap-Up
Sunday, February 9, 2014
Monday, February 10, 2014
Tuesday, February 11, 2014
Wednesday, February 12, 2014
Thursday, February 13, 2014
Friday, February 14, 2014
Saturday, February 15, 2014