Obamacare Update

I haven’t tried to explore buying health insurance through HealthCare.gov since the first couple of days of this month, because I figured what’s the point? I’ll probably give it another week or so … maybe even wait until late November. Meanwhile, here’s a pretty good summary of what’s going on with the exchange websites:

Here’s a link to the full Wonkblog post.

Say It Ain't So, Jason Street

I knew that Season 2 of “Friday Night Lights” was widely regarded as a bit of a fiasco. What I didn’t expect was that the story of Jason Street and his spinal cord injury would regress into tired disability cliches. Almost immediately, we get the two of the most predictable developments for a disability storyline … Jason starts pining for a miracle cure, and he’s becoming the “bitter, angry cripple” he never quite was in Season 1. Maybe this is what happens when an otherwise good show loses its way. The elements of a good show are still there, just in their worst form. The disabled character who in Season 1 gave us a realistic, nuanced portrayal of disability falls back on the lazy, predictable stereotypes we thought it had avoided.

Photo Of The Day

From the Disability Curious Tumblr blog.

There's More To TV Disability Than "Ironside"

While I am sad that the new “Ironside” has been cancelled, I’ve been catching up on two TV shows that I put off watching for a very long time, that offer incredibly rich, textured, and I think realistic depictions of disability. I’m talking about “Friday Night Lights” and “Parenthood”.

"Friday Night Lights" begins with a high school football player becoming a quadriplegic. "Parenthood" starts with parents trying to understand their rather weird son, and soon finding out he has Asberger's Syndrome, a form of autism.

I'm only about 3/4 of the way through "Friday Night Lights" first season, but so far they have stuck with the injured player, Jason Street and his transformation through rehab. and integration in to a disability community centered on Quad Rugby. Meanwhile, his relationship with his girlfriend Lyla Garrity has occasionally flirted with old, disturbing tropes about disability, romance, and sex, but always realistically and never simplistically. At this point I would call the depiction of disability here generally positive, while at the same time it reminds us that disability stereotypes affect the minds and points of view of disabled people themselves, especially when they are newly disabled.

I've watched all of "Parenthood", up to the latest episode of the new season. I'm impressed with the Max Braverman character himself, but what's most interesting to me is how his parents deal with his Asberger's. Some of their reactions are predictable and played for melodrama. And while the perspective of the show seems to be that Max is a "good kid" with a markedly different way of thinking and interacting, we mostly get all of this through how others react to him. I'm still waiting for an episode where we literally get Max's point of view. However, whether intentional or not, I think the show also subtly demonstrates a key irony of the situation. Max's Asberger's appears to others to be a pathological form of selfishness. Yet, for tall their kindness and obvious love for Max, both his father, Adam and his mother, Kristina are actually more focused emotionally on their own wishes and needs in regard to Max. Kristina wants Max to go to a school dance he doesn't want to go to ... not really because she thinks he'll ultimately enjoy it or benefit from it, but because she has cancer and just wants to see her son do something normal and heartwarming. Adam keeps trying to get Max to take an interest in his job, and tries several times to arrange these sort of idealize "father and son" outings that Max couldn't care less about. This isn't constant, it's only occasional, but when things like this do happen we get to see how fundamentally "selfish" Max's parents are, even if neither they nor the show ever really say it. On a moment to moment, day to day basis, they are great with Max. Over almost 5 seasons, a more subversive message has crept out ... it's all about them, not really about Max.

So, that could be seen as a "negative" or "bad" portrayal, but I think it's quite useful, since I suspect it's a pretty realistic picture of the complex motives involved in parenting a kid with Asberger's and being a kid with Asberger's.

Two more thoughts on both of these shows:

1. In both shows, the disabled characters and disability-centered stories are important, but not the sole focus. I think that's an important element of their success as disability depictions.

2. Neither of these shows got high ratings, but they are both considered high-quality, much admired shows, talked about among people who really love TV. Yet, very little of the talk has been about their disability themes. I'm not sure why that is.

I'd love to see more TV shows deal with disability, and I wish "Ironside" had been a better, maybe a more daring, challenging show. But, I think there's more good disability stuff already out there than we sometimes realize.

Camp Goodwill

Fighting to reopen against long odds

Laura Hand, CNYCentral.com - June 28, 2011

I sometimes forget that when I was a kid, I went to summer sleepover camp. It was Camp Goodwill, in Chittenango, New York. I'm going to take a guess that this was in the summers of 1978 and 1979. The article above is from 2011. All the other links I found were to either defunct pages, or simple business directory pages with name and address only, no reviews or descriptions. I suspect that Camp Goodwill is now closed for good.

Camp Goodwill was a summer camp exclusively for kids with disabilities. I probably could have attended a "mainstream" camp and had a good experience, but the experience I did have was very good. My first year started with a week-long bout of homesickness that still makes me cringe in embarrassment, but I settled in eventually and I really looked forward to and loved my whole two week session the next summer.

One of the things that stays with me to this day is the camp’s contrasts in tone. There was definitely a difference between how the management spoke to us and how the counselors did. The management acted as you might expect of people running a place called "Camp Goodwill”, with a mixture of generic condescension, hippy platitudes, and vaguely evangelical Christianity. The counselors on the other hand …

The counselors were the bomb, the absolute tits.

First of all, several of them were British. Maybe there was some sort of program where college-age Brits and Europeans got summer jobs being counselors at US camps. Anyway, they were all great people, at least in my experience and of the kids I made friends with. Second, and I sort of think this was related, they were fun in totally harmless, but decidedly transgressive ways. They mock ridiculed and made fun of us constantly, not as people with disabilities … though our particular impairments could be fair game … but as individual people with unique personalities.

They swore like sailors, or maybe like football hooligans. They taught us all sorts of dirty drinking songs, one or two of which I can still remember but I will not attempt to prove it here. I have a very clear memory of laughing hysterically when one of the other campers asked a senior counselor why we had to play Wiffle Ball, and he replied, in a completely deadpan voice, "Because it's fun in the sun". Imagine the voice of comedian Steven Wright.

More significantly, Camp Goodwill was the first time I met people around my age with a wide variety of disabilities. It’s when I first started to realize that while a quadriplegic or someone with cognitive impairments seemed very different from me, we were all there together for a reason, or for similar reasons anyway. It's when I started thinking I might be part of an "Us", rather than standing to the side and looking curiously at "Them".

I did stare though, in frank wonderment of a few of my fellow campers. I especially remember the kid with no legs whose preferred mode of travel was sitting on a skateboard and pushing himself with the backs of his somewhat deformed hands. It worked for him, though I remember how calloused the back of his hands were all the time. I’m amazed nobody thought to give him gloves. He was something to see, but I did get to know him more as a person. Turns out he was a bit of an asshole, and that taught me something, too. He probably thought the same of me.

I also made one really solid friend, and we hung out all the time, probably because we had similar disabilities … I think he had Cerebral Palsy, but we both were "walkies" ... and compatible senses of humor. We were in the same cabin both years, and kept in touch with a few letters in between, mainly to make sure we would connect and get adjacent cots the next year. We knew we’d get along, and neither of us were all that ambitious about forging new friendships once we’d found ones we were comfortable with.

Above all, I discovered that people with disabilities ... and the topic of disability itself ... could be funny. As in, not depressing, not heartwarming, not boring, but funny in the best sense.​

I’d love to hear from other people with disabilities who went to disabled kids’ summer camps in their youth. Was your experience good, bad, or indifferent? Would you recommend "disability-only" summer camps to kids with disabilities today?

Last Chance To See It

The last episode of the new "Ironside" is on tonight at 10 PM Eastern on NBC. I think it's been improving episode by episode, but it's been cancelled.

A New Use For Pumpkins

AmputeeOT gets into the Halloween spirit.

The "Social Model" In Action

There's something I should have added yesterday when I was talking about how sliding backwards on accessibility in a business can affect both employees and customers.

The "Social Model" of disability says that people who have disabilities are more harmed and hampered by discrimination and physical barriers in the community than by their actual bodily impairments. This is a pretty widely-accepted concept among people with disabilities and others, especially those who are activists or who have studied and thought deeply about disability issues. Although you don't often hear it outright, I suspect that many people who hear about the Social Model of Disability find it hard to swallow. Maybe they look at their own impairments, or those of friends and family, and feel it's just going too far into abstract theory to say that being paralyzed is fine, while the real problem is lack of curb cuts.

Put exactly that way, I agree that this sounds just a bit off.

The thing is that certain situations prove in a very concrete, very non-theoretical way why the Social Model makes sense. A supermarket cashier who uses a wheelchair and has a wheelchair-accessible work area is, in the practical sense, less disabled. She can physically do the job, and she can earn her own living. If her work area is made inaccessible … a counter made too high, a desk made too low, wheelchair maneuvering space narrowed or blocked … then she is, in fact, more disabled than she was before, even though her physical impairments haven't changed.

When a promising young person has a car accident resulting in a permanent disability, it's big news in a community, a story that makes people feel sorry and sympathetic. When a disabled worker is carelessly squeezed out because of poorly planned, entirely preventable physical changes in a workplace, the affects are, in a very real way, the same. Those are the times when the Social Model of Disability is proved correct and most relevant.

Photo Of The Day

"And here we have our Board President, Mark Christiansen, taking a nice nap while his wheelchair is repaired by AD Kim Meichle."

From the Independent and Visible Tumblr blog.

When They Make Things Worse

October is Disability Employment Awareness Month, a publicity campaign mainly aims at asking employers to hire more people with disabilities. It might be good if they'd also ask employers to stop doing things that make it harder for employees with disabilities to keep their jobs.

One of the disability bloggers I follow, "Crazy Crip Girl", has been going through a long, slow-motion disaster at her workplace. The gist of it seems to be that the supermarket where she works did a big remodel, which included making all the checkout counters higher than they used to be. I don't know whether they are still within ADA specs, but they are too high for this wheelchair user to work as a cashier, meaning she's been bounced around from one position to another. At first, management assured her that the renovations wouldn't mess up the accessibility of her work area, and obviously that's exactly what happened. Then they said they'd put in some kind of ramp / platform so she'd be raised up to compensate for higher counters. They said it, but didn't get around if for weeks … for months? Finally, after yet another soul-crushing meeting, they finally had maintenance put in that ramp, which took them just a day to accomplish. Then, she comes back after a weekend to find they've taken the ramp out; they said it was a safety hazard.

This seems like a textbook case of personal advocacy and systems advocacy going together. Raising the height of the checkout counters may have cost a wheelchair user a job. I'm sure it's also caused inconvenience for wheelchair using shoppers, and shoppers who are very short, like me. I wish they'd commit to a proper, individualized "reasonable accommodation" for "Crazy Crip Girl". But it would be even better if they were forced to redo all their recently remodeled counters, to make them lower again.

They can't say nobody warned them.

To get the story from "Crazy Crip Girl" herself, 

Read this …

Then this …

Then this …

That should get you caught up on the latest developments, and some of the great comments and ideas others have sent.

Photo Of The Day

From the Disability Curious Tumblr blog.

Disability News

Supreme Court to review execution of mentally disabled inmates

Mark Sherman, Associated Press - October 21, 2013

Florida uses a strict IQ measurement to determine whether a person is "mentally disabled" for the purposes of prohibiting or allowing the death penalty. The court will look at whether such as simple and definitive cutoff, which doesn't take into account any other factors, is Constitutional.

Ga. to Review Tough Death Penalty Provision

Kate Brumback, Time Magazine - October 20, 2013

Georgia uses the standard of "beyond reasonable doubt". It sounds like they do consider more than just an IQ score, but that their overall bar for proving "mental disability" is very high. I guess it means that they wouldn't execute someone if a jury said, "He's definitely mentally disabled", but they would if they said, "He's probably mentally disabled."

Death penalty cases involving disabled people are confusing to me. I oppose the death penalty, and I hate to see disabled people punished when they might not really process what it's all about. On the other hand, I worry about messing with or perhaps expanding legal mechanisms for "proving" people are incompetent, in whatever context. Are there any lawyers out there who know whether widening the group considered "mentally disabled" in terms of the death penalty might also expand the group cognitively impaired people people not allowed to make their own life choices? If the Supreme Court decides that while the dividing line is a 70 IQ, 72 is "close enough", will more adults end up under guardianship of their parents or of agencies?

Suit filed in disabled Md. man's death in custody

CBS / AP - October 18, 2013

It sounds like the lawsuit may be based a lot on technicalities and specific medical evidence, not so much on the broader issues. That's probably okay. In terms of deterrence, the main thing is that Regal Cinemas and the mall company might re-evaluate their policies on how to handle unruly customers ... including maybe training staff and security on how to recognize and deal with people who have cognitive impairments.

Another way this could go is that movie theater companies might start requiring disabled people to have supervision, or order their staffs to not interact with them at all. If someone with Down Syndrome decides to go to a movie unaccompanied, after this incident and after a winning lawsuit, will managers just say, "Shit, I don't want them in there alone. Who knows what they'll do?!" Never underestimate a municipality or a conglomerate's ability to learn the wrong lessons from a tragedy.

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

Photo Of The Day

From the Disability Curious Tumblr blog.