Better Journalism

Virginia woman with Down syndrome seeks power to control her own life

Theresa Vargas, Washington Post - July 20, 2013

Credit where credit's due. Here is a Washington Post article that does justice to a disability rights story. I'm sure that a close reading of the article would reveal some ableism, but overall, I think it gave fair consideration to "both sides" of this guardianship case, while connecting it with broader philosophical, policy, and judicial issues.

That's my "meta-analysis" of the journalism. The story itself had me swearing under my breath. I'd have sworn out loud if I'd been at home instead of Starbucks. What shocked me most was the outrageous behavior of the judge.

This Looks Like A Job For The "Wonkblog"

Chantilly bakery gives disabled workers ingredients for success

Tara Bahrampour, Washington Post - July 21, 2013

It's hard to tell from this article whether this is a genuinely empowering, admirable venture, a disability sweatshop, or something in between … like one of the thousands of programs that mean well, but which still operate under assumptions unexamined and unrevised for years, maybe decades. What's really disappointing about this story is that the Washington Post has the resources and journalistic muscle to ask really useful questions. Yet, there are only two sentences in the whole article that indicate any awareness that there's a debate to be had about fair wages and worker rights in various hybrid workplaces / training programs for people with disabilities:

"The employees, who range in age from 21 to 58, work from 8:30 a.m. to 2 p.m., make $7.25 an hour and have sick leave, vacation days and profit-sharing. Some have worked there since the 1990s."

Well … how about some followup on that? $7.25 is Virgina's Minimum Wage. Lots of "sheltered workshops" pay less than that, so this is a good sign. But, do any of the employees with disabilities get paid more than the minimum? What about the ones who have "worked there since the 1990s?" What about health insurance? How do the wages of the bakery's disabled workers compare with the non-disabled workers … like the cashier mentioned in the article? Also, out of all the workers with disabilities in the bakery, since the '90s, have none of them turned out to be able to handle management, customer service, or cash-handling duties? Or, are they only allowed to work in the kitchen? I don't know, because either the reporter didn't think to ask such questions, or she did, but an Editor didn't think the answers were interesting enough to include in the finished article.

Look, this place really does seem a bit better than a lot of employment programs, but I'd like to see some of the Post's other reporters … Like Ezra Klein, Sarah Kliff, and Dylan Matthews at Wonkblog … dig into this as an economics and policy analysis story. What is the state of the art in disability employment? What factors play into how people with disabilities are paid, the hours they work, their opportunities for advancement? How does Obamacare relate to Medicaid, Medicare, and the possibility of private health insurance coverage through an employer? How does all of it rate to the coming Apocalypse for Social Security's Disability program?

In short, why do these always end up being human interest stories, when there's hard news right there waiting to be reported?

Obamacare

Ping Your Reps, Following Up

Tim F., Balloon Juice - July 18, 2013

Balloon Juice is a liberal / progressive blog, and this post suggests asking Republican representatives' offices to test how they handle questions about the Affordable Care Act, (a.k.a. Obamacare), but I think people with disabilities should do this with our members of Congress regardless of party. Part of the purpose of this is to see how well members of Congress respond to questions about the Affordable Care Act ... especially if you already know a particular member opposed it. Most members, regardless of party, place a high value on "constituent services", meaning helping out individuals in their districts. However, Obamacare remains a highly politicized law, and there may be a few members of Congress who will cross the line, so to speak, and provide poor or inaccurate information to constituents just to mess with implementation.

Call if you don't know what Obamacare is about, but call even if you do. Be sure to mention your disability, if you have one. And if you have Medicaid, Medicare or private insurance already, don't assume that Obamacare has nothing helpful to you, especially if you work or are constantly teetering on the edge of eligibility for things. This is how calling to "test" your representatives can also be an occasion for some more focused disability advocacy, to help make even the more supportive members aware of our unique concerns.

I also recommend at least one visit to Healthcare.gov, the big website that will apparently be the hub for Obamacare information and applications.

Oh, This Is Not Good ...

Man sets off homemade bomb at Beijing airport

Katherine Lackey, USA Today - July 20, 2013

Early reports say the man was "paralyzed", and using a wheelchair.

Airport security is awkward enough for people with disabilities. I dread what the TSA will get up to now with wheelchair-using travelers … or for that matter, travelers with any kind of adaptive gear.

Swimming

While watching this, I realized that I haven't been properly swimming since I had my tracheostomy in 1985. By "properly" I mean head under water. I think I got into the water a few times over those years, during family reunions at the 1000 Islands region of the St. Lawrence River, but those were just standing chest deep for awhile, not swimming.

I used to love swimming. For awhile when I was a kid, we had a pool in our back yard, and I and my friends would spend hours in the water, goofing around, picking up pennies from the bottom of the pool, miming action-movie fistfights which for some reason were supposed to be way cooler when done in the water.

It has been so long since I effortlessly jumped into a body of water that I don't exactly miss it. I don't yearn to go swimming. But, I am a bit curious now and I might do something I'm surprised I've never done, and Google "swimming and tracheostomy" to see if there are any tips or accessories for swimming without allowing water to leak in.

A "Master Chef"

My brother Ian is a fellow cooking show fan. A couple weeks ago, he told me about a blind chef who competed on the Gordon Ramsay show, "Master Chef" … one show I haven't watched before. I made a mental note of it and promptly forgot. I don't know what made me think of it today, but I finally searched for some YouTube clips, and watched all 57 minutes of this one:

The commenters and even the person who posted the video all keep calling Christine Ha "inspirational". That just grates on me. As I've said before, partly I think it's the poverty of language; people don't know how else to express their admiration. But really, what's the difference between "inspirational", which I can't stand, and "awesome" or "kick-ass"? The point is that her cooking is excellent by any standard, and apart from a tendency towards tears, she's very tough, practical, and competitive.

A few random observations:

• Christine had a helper for certain tasks, such as gathering ingredients, reading instructions, and walking around the studio. Were the limits of this assistance were discussed on the show itself, with the other contestants?
• It seems like Christine's confidence developed over the course of the competition.
• I was impressed with how well Chef Ramsay seemed to understand Christine's adaptive techniques. It seemed to excite him a little to realize how her adaptations were in perfect accord with the best culinary practices.
• I liked how over time, Christine's fellow competitors would walk in with her holding their arms, hold her cane for her, or whisper a description for her of some visual action taking place on the stage. It looked natural … like what really happens when sighted people get to know and become friends with a blind person.

It seems like this series was a fine balance between sentimentality and high standards. Just when I started to roll my eyes at Christine starting to cry, or at some empty phrase about "overcoming obstacles", the show pulled back and got down to business. The problem with "inspiration porn" is that it lavishes extraordinary praise and emotion on completely ordinary actions and abilities. In this case, the results seem to have more than justified the praise. Christine isn't a blind woman who can cook (Amazing!), she can cook better than most people, blind or not ... (No really, amazing!)

Even though I know the outcome, I think watching the whole season would make the experience even better for being able to see more of the other cooks, all of whom had to be excellent themselves. Unfortunately, Season 3 doesn't seem to be available for streaming. I'll definitely keep an eye out for it though.

Whining, Complaining, and Documenting

1. Whining is when you visit a restaurant you thought was accessible but isn't, and you gripe about it to your friends, blog about it, and add it to your mental list of things pissing you off and stealing your "spoons" today … and that's it.

2. Complaining is when you speak to an employee in the restaurant about the accessibility barriers, and urge that they be fixed.

3. Documenting is when you take available steps to inform others about the barriers, and / or to involve others in an effort to make the restaurant accessible … for instance, posting an accessibility rating on an accessibility website like AXSmap, or AbleRoad, or reporting the details it to your nearest Center for Independent Living or other disability advocacy organization.

Any combination is useful, except maybe doing just #1, which unfortunately is what I think most people with disabilities do ... including me.

Will They Cheer, Or Will They Laugh?

Support shown for MMA bout between disabled fighters

Steven Marrocco, USA TODAY Sports - July 17, 2013

This sounds okay to me, at least based on the information given in the story. They both strike me as consenting adults who know what they're doing, and I see no evidence that the fight will be promoted as any sort of "freak show" … or no more of a freak show than any other MMA fight. Of course, a lot will depend on how it actually plays out. If the spectators cheer as they normally do, then fine. If they laugh at these two guys, that would change everything.

==============

P.S.: By saying, "This sounds okay to me," I didn't mean to imply that these two fighters need my approval. It's just that the article I read and linked to seemed to imply that there is a potential "issue" here, and I'm saying that for the most part, there isn't. In some fundamental ways, this is not another version of "dwarf tossing".

Summer Afternoon Music

It's another hot summer day here … hot enough to keep me inside where I've got air conditioning, wishing it was a little milder so I could be out to enjoy the sun properly. I don't have much to say today, so here's a summery musical interlude, once again from The Onion AV Club's Undercover Series:

Remembering The Pakleds

I was listening to Mission Log: A Roddenberry Star Trek Podcast this morning, and they mentioned a point early in the development of Star Trek: The Next Generation, when Gene Roddenberry asked his team to make a list of ways they could have a character with a disability. The writer David Gerrold, who was the guest on the podcast telling about this, said one of the ideas was to create a character with Down Syndrome who would have a "brain augmentation" of some kind. Of course, in the end they opted for a blind character, Engineer Geordi LaForge, played by LaVar Burton, with his iconic "VISOR" device.

I was surprised Gerrold didn't mention the Pakleds. This was a humanoid species introduced in an episode of TNG that I vaguely remembered, called "Samaritan Snare". The Pakleds were was obviously supposed to be an entire humanoid species that was cognitively impaired. In a moment of deep nerdery, I looked up the Pakleds and that episode on the Memory Alpha Star Trek wiki, and found evidence of a possible disability depiction train-wreck. Before I get into it, though, I'm going to watch the episode, so I can comment on it directly, and see if it's as terrible as the write-ups suggest it is.

Mixed Feelings On Another Issue ...

Judge halts Georgia execution over injection issue

David Beasley, Reuters - July 15, 2013

Can I just say that I hate everything about this? Not about the stay ... I'm glad about that ... but about the whole question of executing people who are cognitively impaired.

Much as I have mixed feelings about people with disabilities running for high office who I disagree with about everything, the issue of executing people with cognitive impairments confuses the hell out of me. I oppose the death penalty entirely, but the pedantic hemisphere of my brain can't stop quibbling about the arguments that have to be put forward in order for laws to say that it is okay for people with "normal" intelligence, but unconstitutional for people who are "mentally retarded". I understand and sort of buy the idea that comprehending the crime and the punishment is the key here, but I still think it is hair-splitting, and in many cases may not even affect reality. It may be harder to understanding things if you have an IQ below 70, but surely it isn't a bright line divide. If a person really can't understand basic moral concepts about killing and beating people, or about punishment of misdeeds, then what does that say about his or her ability to make other decisions, or about his or her agency ... or of other people with cognitive impairments?

On the other hand, this may be a rare kind of case where the law actually does reflect an instinctive moral revulsion. For a sample of that I recommend the Lars Von Trier film Dancer In The Dark. Fair warning though, it is deeply weird and very upsetting.

The Texas Candidate

AG Abbott formally kicks off gubernatorial bid

Houston Chronicle - July 14, 2013

A wheelchair user is running for Governor of Texas.

It's a good test for my disability solidarity. I despise his political philosophy, so I hope he doesn't win, but whatever the outcome, it will be interesting to see how Abbott's disability factors into his campaigning, his opponent's strategy, and the public's reaction. Apparently, he's favored to win, which I guess must say something good about changing attitudes towards disabilities.

It sounds like he cited his injury and disability in a pretty standard, non-controversial way … a turning point in his life, challenges overcome … but I wonder if he'll go further than that. I actually kind of liked his bit about being a politician with a "spine of steel". I wonder if he has more developed than usual positions on disability issues. Would he be more progressive on those matters, or stick with across-the-board conservatism? Will anyone ask him?

It could be fun to watch.

I Love A Parade

Disability Pride Parade to step off in Chicago

Karen Meyer, ABC Local - July 14, 2013

I'm pretty sure this is the first time I have heard of anything like a "Disability Pride Parade", or thought of it as an idea. I can't believe it isn't a more common thing. I'm not big on flashy protests. I'm not against them, it's more of personal dislike. But I could get behind something like this once a year. Sure, it's kind of copycatting the LGBT Pride tradition, but a disability version, done right, could be unique enough to become a strong tradition of its own, with a distinctive message.