Disability Thinking

Wednesday, March 12, 2014

Winter Paralympics - Thursday, March 13

Sled Hockey Semifinal (live)

5:00 AM Eastern

NBC Sports Network

Sled Hockey Semifinal

Noon Eastern

NBC Sports Network

I confess, I haven't watched any of the Winter Paralympics since seeing the Opening Ceremony. I don't know why. Each day there's something available to watch during the waking hours. I've been blogging the event times for others. I guess each day I forget and because the broadcasts are too short, the event is usually over by the time I remember. I even missed the Wheelchair Curling this afternoon ... Wheelchair. F-ing. Curling!

I am determined to watch the Sled Hockey Semifinal tomorrow though. If that turns out to be fun, then I'll try to watch whenever I can until the games are over.

Meanwhile, here's a link to the medal standings so far. Briefly, Russia is in first place, Germany in second, Ukraine in third, Canada is in fourth, and the USA is in ... 13th place with 4 Silver and 4 Bronze medals.

Photo Of The Day

Man in manual wheelchair doing a handstand ... man upside down, wheelchair up in the air

From the Perks Of Being Disabled Tumblr blog.

Best Article On Sub-Minimum Wage

Advocacy topic icon ... green highlighter pen highlighting the word advocacy on a page of text

When Should Disabled People Be Paid Less Than Minimum Wage? Curtis Decker Says Never

Angelo Young, International Business Times - March 11, 2014

This is the best article I have ever read explaining the issue of sheltered workshops and the 14(c) certificates, which employers to pay certain disabled people less than minimum wage. In addition to underscoring what’s wrong with the practice, the man interviewed, Curtis Decker, does a great job of explaining why anyone still supports this. Here is an excerpt:

"IBTIMES: What do families think of their disabled relatives working in an environment where the employer determines the minimum wage in accordance to the Section 14(c) rules?

DECKER: Some want their disabled relatives integrated [working in a non-segregated environment for a private employer] and making at least minimum wage. But you have others who say, “Listen, leave it alone. It’s OK. She gets her social security check. She makes a little extra money. She gets out of the house every day. She’s not sitting at home watching television. I can go to work and this is a place she can go to. And you come along and want to disrupt this thing, you’re going to make my life miserable.”

IBTIMES: How do you answer that?

DECKER: I have to tell them that this isn’t about them. Our job is to represent the person with the disability. You can go into a sheltered workshop any day of the week and go up to workers and find someone saying they like the job, and that their friends are there. Like anybody else, you’ve been doing the same job for 10 or 15 years. You can’t make an informed decision if you haven’t experienced anything else. We would have the same issue when going into institutions – you find people who are asking you to get them out of there, and others who don’t know what the alternative is, or where you want to take them, or whether they’ll be separated from their friends if they get out."

I have just a couple of quibbles about the article.

Decker correctly points out that the biggest users and defenders of the 14(c) program are other disability-repeated non-profits. However, he fails to distinguish between old-line, paternalistic oriented service agencies and the more advocacy oriented, modern, consumer-driven disability organizations that don’t use the program or anything like it, and are fighting hard against it. That includes the National Council on Independent living and the hundreds of local Centers for Independent Living around the U.S., the Autistic Self-Advocacy Network, the National Federation for the Blind, and the National Council on Disability. In fact, whether an organization supports or opposes sheltered workshops and the 14(c) certificates program is a good way to tell what kind of disability organization you are looking at.

I also think it is important in articles like this to remind readers that this isn’t about a handful of large corporations. There are similar sheltered workshop programs in large, medium, and small communities all over the country. One way to start working on this issue is check to see if your local disability agencies use the practice, or if they oppose it.

Other than that, I’d say this is essential reading for anyone with an interest in disability issues.

Tuesday, March 11, 2014

Winter Paralympics - Wednesday, March 12

Wheelchair Curling, USA vs. China (live)

1:30 AM Eastern

NBC Sports Network

Paralympics Day 5 Coverage

3:00 PM Eastern

NBC Sports Network

Great Video On Employment

This is a really outstanding TV news story about employment of disabled people, from the Canadian Broadcasting Corporation (CBC). There are only two points I think should have been hit more solidly:

1. The profitability of hiring disabled workers, at least in the businesses shown, isn’t because they are paid less than non-disabled workers. The story notes that they are paid the same as other workers. I just wish they had repeated that a few more times.

2. The story also notes that these businesses aren’t sheltered or disability-only workplaces. The largest percentage I heard was, I think, 40% disabled workers at the Walgreens distribution center. That means that the majority of workers are non-disabled, so these are competitive, integrated jobs.

Via the Autistic Self Advocacy Network.

Give Us Valets

I'm not feeling too well today, so I'm spending the day with some streaming entertainment from Netflix and Hulu. I am finally watching a fairly famous British TV show from the early '90s, Jeeves and Wooster, starring Hugh Laurie (who later played Dr. House on House), and Stephen Fry. Laurie plays a young, single, upper class flibbertigibbet named Bertie Wooster, and Frye plays his suave, outwardly deferential, but benignly cunning Valet, Jeeves.

I bet there are a lot of disabled people who would give up quite a lot of other supports if they could be replaced by a fully paid, full-time Valet. Or, to be completely proper about it, a Valet for men, and a Lady's Maid for women.

Imagine how much physically disabled people and chronically ill people would be able to accomplish with someone who would not only make us our breakfasts and help us get ready in the morning, but also make our transportation arrangements and either accompany us on our daily travels, or else stay behind, tidy up, and have a cup of tea ready for us when we come home exhausted. It's not just an amusing fantasy. Lots of severely disabled people have personal care aides that do some of these things. But a Valet or Lady's Made is different, and this Jeeves fellow seems like the perfect model. Among other things, he subtly sets his employer right when he's not at his best, (face it, we've all been there), but he never scolds, never lectures. Above all, Jeeves is always on the alert to make his employer's life go more smoothly.

I think that this old-fashioned model of personal service is a better model for most home care situations than, say, nursing. What most of us need every day is facilitation, not treatment. If this is "privilege", I think we disabled people need more of it.

Monday, March 10, 2014

Winter Paralympics - Tuesday, March 11

Biathalon (live)

2:00 AM Eastern

NBC Sports Network

Sled Hockey, Team US vs. Russia

3:00 PM Eastern

NBC Sports Network

Necessary But Not Sufficient

I heard a phrase the other day that struck a chord with me, that I think can help us deal with the idea behind that infamous Scott Hamilton quote:

“The only disability in life is a bad attitude.”

The phrase I heard was, “… necessary, but not sufficient.”

I think this more properly expresses the role of mental attitude for disabled people. Having a positive, optimistic attitude is probably necessary for achieving independence, happiness, or whatever is your definition of success. But attitude alone isn’t enough to overcome the real barriers we encounter. A positive attitude may be necessary, but it is not, by itself, sufficient.

Now, what constitutes a “positive attitude”? That is another question entirely.

Oscar Pistorius: Which Kind Of Horrible Person Is He?

Picture of stack of newspapers with headline on the top paper reading Breaking News!

Pistorius vomits during graphic testimony

Associated Press - March 10, 2014

It has been a year and a few weeks since Oscar Pistorius was arrested for the alleged premeditated murder of his girlfriend, Reeva Steenkamp. The trial is finally fully underway, so we are hearing again about what was either a massively tragic accident, or a terrible, barbaric crime. I don’t have much to say that’s relevant to a disability blog, and only a few thoughts of any kind:

1. I am more persuaded than I was at first that it might really have been an accident. That Pistorius vomited in court on hearing the details of his girlfriend’s wounds doesn’t sound like the reaction of a deliberate murderer. In fact, his overall behavior in court seems exactly like how a person would react if they had accidentally killed their significant other in a bloody and gruesome way. I am not saying that I’d be ready to acquit him yet, but his story seems more plausible to me now than it did right after Steenkamp was killed.

2. If it was an “accident”, it certainly won’t be what anyone would call an “innocent mistake”. It seems like whatever else he is, Oscar Pistorius is a gun nut … and a reckless one at that. It sounds like he is exactly the kind of guy who loves to show off his newest firearm to friends, family, and maybe especially slightly horrified pretty women. Evidence mounts that Pistorius is the kind of guy who will act all reverent and masterly about his weapons, assuring people that they are perfectly harmless if you know what you’re doing … “See, it’s not loaded, here, I’ll show you …” BANG.

3. Also, I understand that South Africa has a lot of violent crime including “home invasions”, but what kind of siege mentality causes someone to fire multiple shots into a bathroom with a closed door, when you never actually saw who is on the other side … and you know your girlfriend is in the house with you?

So, unless he’s a cold-blooded murderer, or a man with a hair-trigger temper and a gun fetish, then he’s one of those massive assholes who mostly go through life doing no more damage than pissing people off, but who occasionally run into situations where their toxic obsessions, fears, and arrogance … plus the right weaponized tools … combine to produce life-taking and life-ruining results.

All of which probably has noting at all to do with his disability, or his athletic abilities. We say it all the time. Disability doesn’t make people noble or angelic. We come in all varieties, good, bad, and tragically stupid.

Representing Men

Three men in manual wheelchairs, in a side by side line, all doing wheelies

From the hot guys in chairs Tumblr blog

As I have noted before, there seem to be a lot more photos of women with disabilities looking amazing and sexy, than there are of men. Is the “selfie” trend mostly a woman thing? I don’t know. In any case, that’s why I was so excited this morning to find this Tumblr blog, which is simply photos of men in wheelchairs, in a variety of situations, clothes, and moods. Thankfully, there are no captions, and no obvious point being made, other than to provide representation. Yes, there are all kinds of guys who use wheelchairs. Yes, they do all kinds of things. Yes, they have a variety of personal styles and attitudes. Here they are.

I think this gets at why disabled people who hate “Inspiration Porn” still post and share photos of disabled people. We aren’t inspired by the specific scenes, or by blandly positive slogans, so much as we are tickled to see so many different people with whom we share the disability experience. We don’t all work in the disability field, or have access to a large in-person disability community. Once in awhile, it’s helpful to see confirmation that the statistics are correct … there are a lot of us out there, even if we don’t meet other disabled people most days. And frankly, though I do enjoy looking at those photos of fantastic disabled women, I occasionally feel that the male disabled population is somehow missing from the Internet disability community.

“hot guys in chairs” is a welcome corrective.

Sunday, March 9, 2014

I Can't Stand Watching "Parenthood", But I Can't Stop Watching It

This is just a heads up that I will be attempting to do a season wrap-up of the TV show “Parenthood”, focusing on this season’s developments with the Asberger’s character Max Braverman and his parents, Adam and Christina Braverman.

Yesterday afternoon I started watching last week’s episode, which I believe picks up on the idea of Adam and Christina starting up their own school for kids with Asberger’s, but I cut it off ten minutes in and went to do something else. I found myself disagreeing in a very deep, instinctual way with just about everything coming out of Adam and Christina’s mouths. Mind you, I can’t quite explain what was wrong. As I have often felt about this fascinating storyline … which has run through the entire 5 year series … the depiction of Asberger's seems to be reasonably accurate and free of truly ugly stereotypes. However, something is just a bit “off” about Adam and Christina’s approaches to Max. They are portrayed as more educated and enlightened than most, but no matter what they are dealing with, something always seems to be missing from their calculus.

I feel like "Parenthood" is capturing some important truth about parenting kids with disabilities ... something possibly uncomfortable. But, I can't quite articulate it yet.

Then there is what I still believe is a hidden irony of the Max storyline. People with Asberger’s are supposed to be self-centered and lacking in empathy. That’s the stereotype anyway, and probably the most common understanding that laypeople have about Asberger’s and other types of Autism. Yet, time and again, it is Adam and Christina who seem to me the ones who are self-centered and cut off from Max's feelings. The evidence is subtle, but on so many occasions the real "issue" at hand was Adam or Christina's pride, fear, dreams, and craving for "normalcy", not Max's needs or wishes. And they seem entirely unaware of it, which I find both irritating and transfixing. I think there’s a good chance, too, that the writers, (including show-runner Jason Katims who has an Autistic child), aren’t aware of this, either. There is a layer of meaning there that nobody intentionally added, and I'll bet a lot of people haven't noticed.

From a cultural criticism point of view this is heady stuff, and fun to try and pick apart. But from a disability standpoint it can be utterly exasperating. Sometimes, like yesterday afternoon, I just don’t have the gumption to grit my teeth through it.

In case I’m not clear, I love “Parenthood”, and think that its portrayal of Max is extremely valuable. If nothing else, it paints a pretty accurate picture of what passes for enlightened thinking about Autism these days, among people with a little bit of knowledge about it and lots of good intentions. Plus, there are other stories going on, too. Max and his family are only one part of the large Braverman clan, all of whom have both endearing and annoying qualities. I’m sure I’m not the first to say something like this, but anyone who makes Amber cry, I want to punch them in the face. It’s that kind of show.

I’ll try to wrap it all up and come to some conclusions when the current season is done.