Photo Of The Day

From the Just Rollin On Tumblr blog.

Autism, Advocacy, and the Choices of "Parenthood"

I've been watching the NBC series "Parenthood" over the last few days. I wasn't even aware of it when it premiered in 2010, and it has sat in my Neflix queue for about a year. What finally prompted me to watch it was hearing that one of the main characters was a kid with Asberger's, though that's all I heard … I've neither heard nor read anything about whether it's a good, accurate, or helpful portrayal of someone on the autism spectrum. I finally caught the season premier a couple of weeks ago, and one of the first scenes I saw was with that character, Max Braverman (played by Max Burkholder). I was impressed enough to go back and finally watch the whole series from the beginning. It's a great show and I'll probably write more about it later this week.

One of the first season episodes featured the huge Braverman family participating in a fundraising walk for Autism Speaks. This to me was all at once not surprising, surprising, and disappointing. It was not surprising because I think that if you asked the average person to name an autism organization they'd name Autism Speaks, maybe especially if the people you are asking are entertainment industry professionals out to "do some good" … people that Autism Speaks has carefully and successfully cultivated.

It was disappointing because while the show, I think, treats autism / Asberger's with sensitivity and sophistication, those qualities aren't Autism Speaks' long suit. I don't claim to be an expert, but both my gut instinct and a fair amount of reading and inquiring lead me to view Autism Speaks as one of those most vexing of advocacy organizations … one which in the most general sense has good intentions, but whose unexamined prejudices and motivations lead them to arguably do more harm than good. Basically, Autism Speaks adamantly views autism as a "disease", it's primary goal is to cure it and / or prevent it

What could be wrong with that?

First let me say that I don't entirely buy the polar opposite argument, which is that autism is simply a matter of neurological difference, of diversity, and that "neurotypical" people view it as a disease because they refuse to understand it, and are angry because it annoys them and disrupts their lives. By this view, Autism Speaks is just one step shy of being a genocidal organization, and at best a group which claims to be "for" autistic people, which is really mainly interested in milking the frustrations and anguish of parents who can't believe the injustice of having a problematic child. As I say, I don't fully buy this, because I suspect that autism can be quite painful for people who have it as well, and not just because of other peoples' prejudices. But, in case you couldn't tell by my writing, I think this "pro autistics" view has some merit. At the very least, I think that Autism Speaks displays a rather shocking lack of self-reflection. It still hasn't corrected one of the most simple criticisms aimed at it ... that it doesn't have a single person on its Board of Directors or senior staff who has any form of autism.

Anyway, what would I have preferred to see "Parenthood" do rather than make a direct, after-show pitch for Autism Speaks? How about paring it with a pitch for the Autistic Self Advocacy Network, an organization with a different type of mission, founded by and for people who actually have autism spectrum conditions? So far, "Parenthood" appears to be at least acknowledging that autism isn't just a tragedy that happens to families, and that people with autism are full human beings, not noisy, out of control little machines that need to be fixed. Yet, they made the rather lazy, obvious choice not only to show the family promoting Autism Speaks … that would be believable given the organizations ubiquity … but encouraging support for it out of the show itself in real life so to speak, and equating support of Autism Speaks as support for people with autism.

I don't have it all figured out, but it would help to at least acknowledge that there's a difference of opinion on the subject.

Photo Of The Day

From the rolling through life Tumblr blog.

Disability News

I set my Google News page to find disability-related stories using keywords, "disabled" and "disability", and I pick a few that interest me ...

National Epidemic of Horrible People Pretending to Be Disabled

Brad Tuttle, Time Magazine - October 12, 2013

This article seems like a first draft of a better editorial, on a topic that may or may not be all that important. Tuttle loosely ties together two fairly recent disability "issues" … people pretending their pets are assistance or therapy animals so they can take them anywhere, and the Disney World line-jumping scandal … and one notably more perennial problem … abuse of handicapped parking permits. My overall reaction is to think, "Yup, that's cheating right there", but it just doesn't make me very angry. The consequences and effects on people with disabilities aren't really spelled out or dramatized. Obviously, these things do hurt people with disabilities, but not nearly as much as employment discrimination, lack of accessibility, or … for many … being stuck in a nursing home or other institution just so they can get help to get out of bed, wash, and go to the toilet. I'm also surprised he didn't fold in the hue and cry over people supposedly scamming Social Security Disability. I think that's a similarly overblown problem, but it does fit the apparent theme … how "ethically challenged" people are these days. Finally, it would have been helpful if the article at least tried to understand how people think about these kinds of cheating. What do they tell themselves in their minds that makes it okay?

Disabled principal stuffed away in school’s basement

Laura Italiano, New York Post - October 14, 2013

Like a lot of disability-related news stories, this article does a great job of dramatizing the issue it's focused on, but leaves a fairly obvious followup question unasked. If the Principal can't navigate her whole school because she now uses a wheelchair and they haven't installed a lift, what did they do with any kids they must have had now and then who used wheelchairs or crutches? They even noted that the Principal's original office was, "at the top of the stairs", and that kids loved to drop in visit with her. Well, disabled kids can't have done, can they?

The thing is, the answer to these questions might possibly be worse than most readers would guess. Knowing a little about how educational decisions are made in New York State, my guess is that grade-school-age kids in that district who use wheelchairs or crutches are sent to a regional BOCES … a separate facility for vocational and "special education" classes. I hope not. I hope that at least some of them have classes moved to accessible floors, or that the school tries some other ways to accommodate them, but if they won't help the Principal get to her office, I'm doubtful that they'd be all that creative with "a few" disabled students.

Letters on "Disability, USA"

"60 Minutes", CBS - October 13, 2013

A few letters in response to last week's "60 Minutes" story on suspicions of widespread cheating and corruption in Social Security Disability. It's good to see that the story is getting at least some well-deserved flack from viewers.

Moving

Disability Thinking is moving. I am working on setting up a Squarespace website where this blog will reside, alongside a bunch of other disability-related content. Blogging here will be light for the next few days, while I make the new place presentable.

Once I do move, I'll announce it of course and put up a link to the new site. Also, I'll leave up this Blogger blog indefinitely. All of my old posts will make it over to the new site, but I think I might be losing my subject tags.

Stay tuned for updates.

Photo Of The Day

From the Soupladle Tumblr blog.

Disability On TV Update

This week "The Michael J. Fox Show" got a little worse, while "Ironside" got a little better. The two haven't quite switched places yet. The M.J. Fox Show is still a better sit-com than Ironside is a drama. But they are close to meeting in the middle. Sadly, neither show is doing well at the moment, and two of my favorite TV critics are listing both among the "walking dead" of the new fall season.

Some specifics ...

The Michael J. Fox Show - Episode 4 "Hobbies"

• The words "flop sweat" showed up a lot in early reviews of this show. At first I thought that was overstating things, but now I'm not so sure. The show feels even more rushed, desperate to make us laugh, than it was when it started a few weeks ago.

• For a show that carefully spells out its lesson for the day at the end of each episode, its lessons are awfully mixed up. Is Twitter a fun medium for snarky aspiring writers, or an appalling weapon of digital bullying? Is Mike basically wrong and paranoid about his newsroom rival, or is she the real sociopath?

• The only reference to Mike's Parkinson's Disease was when he said he was more coordinated on the ice. Actually, I'm not sure that was a Parkinson's reference. If it was supposed to be, they should have connected the dots a bit more … maybe note how it's like stutterers who don't stutter when they sing. Sometimes, you really do have to explain the joke.

• Best moment: The hockey dads have ended up playing each other while the kids watch, bored and literally sidelined. When Mike's wife Annie shows up at the rink, one of the fathers calls out, "Wife!" exactly like Wayne and Garth shouting "Car!" while playing street hockey in the "Wayne's World" movie. It was funny, yet they even let that one drop, because the other players didn't react. They should've stopped skating and gaped at her or something.

Ironside - Episode 2 "Sleeping Dogs"

• This episode was not bad. I actually got into it. They set up a couple of intertwining mysteries that keep my interest. I really wanted to find out what they were all really about. Also, the dialog and one-liners were a little better, funnier, more natural. Everyone seemed more relaxed.

• A few disturbing patterns established in the Pilot seem set to continue. For one thing, if they're going to have Ironside sleep with every sexy woman he flirts with, in every episode, it's going to get stupid and offensive, fast. Also, kind of like the "Fox" show, "Ironside" seems to be shooting for sophisticated moral ambiguity, but missing it and hitting confusion instead. It seems like we're supposed to understand the lesson Ironside learns about child abuse when observing what happened to his former partner's nephew, but I really didn't get what the lesson was supposed to be. Which would be fine, except that it didn't seem to be inviting me to ponder the lesson. We were supposed to understand it, and it wasn't understandable the way they depicted it.

• Given my squeamishness at the Pilot's celebration of police brutality, I did like the little nod in this episode to the idea of cops not shooting people as soon as they appear threatening. The cop physically disarms the suspect instead, then holsters his gun, saying, "Yup, this thing is definitely not working."

• As I hoped, we may be starting to learn about each of Ironside's team, and why he chose them. Presumably, each of these first few episodes will focus on one of them. But the face in the spaghetti moment was odd and weak, especially as a capper to the whole episode.

• As of right now, the new "Ironside" is about at a level of quality that would have made it a solid, not spectacular hit in the early '70s … the equivalent today would be one of the CSI or Law & Order spinoffs. For many reasons that's just not good enough anymore. For starters, the schedule already has enough mid-level police procedurals. However, the thought did trigger another. If "Ironside" doesn't work out, why not add the Ironside character to one of the more established procedurals? Or, have him make an occasional guest appearance? They seem to operate in roughly the same universe … just a slight fictional step back from our real world.

• Maybe I'm grasping as straws, but I just wonder whether a detective in a wheelchair is enough of thing today to base a whole show on. That would be progress, I suppose. If so, it might still be enough for an guest star collaboration with Ice-T and Mariska Hargitay.

• Best moment: "If you're going to stare, at least get the hell out of my way, alright?" -- Sgt. Ironside. Now that is a genuine disability line.

==========

Ironside - Wednesdays, 10:00 PM Eastern, NBC.

The Michael J. Fox Show - Thursdays, 9:30 PM Eastern, NBC.

Photos Of The Day

From a collection of Frida Kahlo's possessions, posted by Madam Meow / Holly Gaboriault, via Sunshine, Been Keeping Me Up For Days.

What's It All About: Ableism

If the implied imperative of sexism is something like: "Women must be dominated and subservient", then what do we think is the implied imperative of ableism for people with disabilities?

• You must be made normal, acceptable
• You must be covered up, disguised, hidden
• You must be less disturbing, disruptive, upsetting
• You must be eliminated, phased out
• You need protection, supervision, monitoring
• You must make us feel good, otherwise you'll make us feel bad

I think all of these describe part of what people with disabilities experience as "ableism". At the same time, I don't think it's enough to apply the "ableism" label to, "all bad things that happen to a disabled person."

So, what IS ableism all about?

Late Night Music

Josh Caterer of Smoking Popes covers "Ask" by The Smiths on Tim's deck

For more Morrissey mash-ups of a different kind … This Charming Charlie.

More About Sheltered Workshops

Disabled may be displaced

Sean Dobbin, Rochester Democrat & Chronicle - October 8, 2013

Sheltered workshops face dramatic changes

Lohr McKinstry, Plattsburgh Press-Republican - October 7, 2013

These two articles on New York State's plan to phase out funding of sheltered workshops bring up a couple of surprisingly (to me) valid concerns. At the same time, they don't give nearly enough explanation for why the state is implementing the policy.

First of all, if it's true the state is vague about what they'll consider an employment "success" for someone phased out of a sheltered workshop, then that's a problem. Without knowing any of the details being discussed, I would suggest something like an individual assessment, where "success" means integrated, non-sheltered employment of at least equivalent hours and / or take-home pay.

The second, even more potent concern is that maybe right now isn't the best time to make this change. Sheltered workshops should have been phased out when New York State was at or near full employment … during the later 1990s, or 2005 to 2008 … when a variety of jobs were easier to find, even in more impoverished places like Essex County.

Still, to read these articles, you'd think the whole thing was some sort of pointless bureaucratic "innovation" nobody really wants. That's not true. The "supported employment" model for people with significant developmental disabilities is the state of the art, and organizations that still operate sheltered workshops are behind the times. Sheltered workshops are textbook examples of social work models that were once radical and progressive, but which are now seen as antiquated in comparison with newer ideas. Sheltered workshops were always benevolent in intent, but were from a time that assumed the need for a degree of protectiveness and constant supervision that simply doesn't hold up today. Most people with developmental disabilities and their families want more than a pretend job in a closed, protected, minutely regulated environment, and know that it's possible … or would be in a more or less smoothly running economy.

So, part of me feels that the Essex County agency is right to doubt whether the open job market can do better for their workshop employees. But another part of me has seen two substantial periods of extended economic growth come and go, which people with developmental disabilities basically missed because it was always "too soon" to think of trying something better than sheltered workshops.

Picture Of The Day

From the Simpsonized Tumblr blog. R. J. Mitte as Walter Jr. "Flynn" White, on "Breaking Bad" … "Simpsonized".

Don't Forget Sen. Coburn ...

While we are (rightfully) calling out "60 Minutes" for the terrible journalism in their "Disability, USA" story ... can we remember also to direct some ire at the main man hyping this SS Disability panic,  Sen. Tom Coburn (R-Okla)?

Sen. Coburn's official website: http://www.coburn.senate.gov/public/