A Legal Victory For Choice

Disabled woman who won court battle with mother moves in with friends

Noreen O'Donnell, Reuters - August 3, 2013

This is an interesting victory, and doubly valuable because the ruling was so specific. The judge properly separated two issues. Does Jenny currently need a guardian? Yes. She has real cognitive impairments and at this time she needs some everyday supervision to live safely. Fine. Can she choose who her guardian is? Yes! Jenny can choose guardians who she feels comfortable with, and who will buy into and help facilitate the kind of life she wants, not what they think she should have. Furthermore, Jenny's new guardians have a mission, to help her learn to manage her own life, perhaps to the point where she will no longer need a guardian. The judge here underscored that:

a) Cognitive impairment isn't an all-or-nothing proposition.

b) It isn't a completely static condition.

c) Needing help with everyday "executive functions" doesn't mean you can't make sound, valid choices.

I don't know if this case broke any legal ground, but it beautifully, simply illustrated the more progressive approach to cognitive impairment that is evolving, and gradually (not fast enough) replacing older, more paternalistic models.

And of course, it's just awesome for Jenny.

Bring Back Wheelchair Kid!

"Orange Is The New Black" generally succeeds at whatever it tries to do, so I was a little let down by the Episode 10 scenes with the "scared straight" wheelchair user kid. There's a followup scene with her where she's more of device to advance regular characters' plots. It's a better scene than this one, but this one has more interesting disability stuff.

The idea of a gang-banging wheelchair user works for this show, but the way the character is played is kind of lackluster. I think she's supposed to come off as bad-ass, but though her words are tough, her affect is sort of limp. Also, for a show with such outstanding writing, what she says about her disability is pretty cliché … "I can do anything anyone else can!" Not the most interesting thing to hear from a disabled teenager. I do like how the mere presence of a kid in a wheelchair throws off the carefully built swagger and menace of the inmates.

I don't know … maybe there just wasn't enough time to do more with a one-off visiting character. So, I'm hoping they'll bring Miss "roller" back next season as an inmate. I'd like to learn more about her through flashbacks, as the show has done with other characters. It would also be interesting to see whether she ends up specially victimized, specially protected, or whether she would wind up asserting some authority of her own … maybe carve out her own niche in the Lichfield social system.

Why Is Accessibility Such A Big Deal?

Disabled make a point in social media and says that hotels do not respect accessibility rules

Ricardo Shimosakai, Tourismo Adaptado - July 31, 2013

I like this strategy … using social media to get the attention of businesses with big accessibility failures. It's a good addition to reporting accessibility details on dedicated accessibility rating sites like AXS Map and AbleRoad. Maybe the thing to do is rate all the businesses, good and bad, and reserve the Facebook and Twitter dings for the most egregious cases.

The article also clarifies for me one of the reasons why accessibility barriers can be so annoying, sometimes more annoying than the actual consequences would seem to justify. The reason is that so many accessibility barriers are so damned easy to fix or prevent. It's hard enough dealing with legitimately difficult barriers barriers that require expensive construction or equipment to fix, without also facing barriers that are there solely because of a person's thoughtlessness … like a wheelchair accessible restroom crammed with wine boxes. The same goes for handicapped parking spaces used as dumps for plowed snow, elevators used to store delivery carts, and store aisles narrowed by product displays. Even if the consequences are small, these problems are doubly galling because we know a person made a decision that resulted in another barrier … a decision that could easily have gone a different way, at no extra cost and little extra inconvenience.

And by the way, that's why accessibility overall is such an emotional issue, as well as practical. When you have a disability, there are lots of difficulties you can't change, you just have to live with. But accessibility is something we know how to do. So, when it doesn't happen, we know our misfortune isn't random, it's the result of either ignorance or a conscious decision that that the money, effort, or creative thought were determined by someone too much to expend to make life a little easier, or remotely feasible, for us. Even though we're not supposed to, it's hard not to take that just a bit personally.

In Search Of Disability Culture

I don't think there's really a "Disability Culture" yet. There are several Disability Subcultures. Some of them are unique and more or less undiluted, coming directly out of the disability experience itself. Most are manifestations of otter "Cultures" mixing with and processing the disability experience. I feel like I want to expand on this, but right now I can't find the right words. To be continued ...

Question

Is it a species of inspiration porn or objectification that I'm smiling, feeling kinship, and having, "You go girl!" thoughts about the 9 year old girl with a right hand amputation who is visiting this Starbucks with her parents, dancing around as she walks up to the counter, seemingly having a great, happy summer day?

Brothers And Sisters

Siblings Impacted By Disabilities Too, Study Finds

Michelle Diament, Disability Scoop - July 30, 2013

This is an innocuous article, with an unsurprising conclusion, but for some reason it bugs me. My first reaction is to say "Boo hoo! Growing up with a brother or sister who has a disability must be awful!" The next thing I think is that having a sibling with a disability is just one of many factors that can contribute to stress, unhappiness, and mental troubles for children and youth. Finally, I realize that what's upsetting me is that the article threatens to open a can of worms that I've never really dug into. I don't think there's anything as disgusting as worms in there, but I'm sure I'd find some surprises.

Why Have I Never Seen This Before?

The "Capitol Crawl" demonstration, pushing for a vote on the Americans with Disabilities Act, in 1990.

Those were the days.

Not that they're gone, or that protests like this aren't relevant anymore. It's just that there was a simplicity to the ADA that you just can't find in today's really big disability issues. So, you can do a big, dramatic action like this, but a large percentage of those who see it will genuinely wonder what the hell it's all about, and suspect you're being over-dramatic or cynically manipulative. Besides, part of the awesomeness is that in 1989, it really, really surprised people. I just don't think a disability rights action along these lines can be surprising anymore, especially in jaded Washington DC.

What will the next truly astonishing disability rights protest look like?

P.S.: Obviously, watching this for the first time yesterday, the same day I posted about another, less uplifting "crawl", was a nice coincidence.

A Worthwhile Compromise?

Subminimum Wage Plan Divides Disability Advocates

Michelle Diament, Disability Scoop - July 30, 2013

The legislation described seems right to me. It's a compromise, and I'd prefer to see Minimum Wage for everyone, but this I think addresses most of the philosophical and practical problems involved. I would like to see the bill go a bit further in defining sheltered workshop work as job training rather than employment. To me that's as important as Minimum Wage. However, it looks like the bill would make that more of a reality, if not in name then at least in practice.

So, why not just ban all subminimum wage? My wild guess is that there are too many families of people with significant cognitive impairments who think that would result in their loved one flat-out losing their "job". That may not be true, and it may not be true that too many families would think that, but it's the kind of argument that's kept subminimum wage and sheltered workshops going all this time in the face their increasingly embarrassing contradictions. It's also the same argument always used to argue against Minimum Wage increases. The compromise will help reinforce the idea that sheltered workshops and subminimum wage work are short-term pathways to full employment, not permanent, dead end jobs for supposedly substandard workers. This is an improvement.

Because the bill wouldn't do away with sub-minimum wage work altogether, I'm surprised that the National Council on Independent Living is in favor of it, but in a way that encourages me a bit to support the compromise.

More about sheltered workshops and sub-minimum wage work here, here, here, and here.

Crawling

Disabled Man Claims Delta Forced Him to Crawl On and Off Plane

Alexis Shaw, ABC News - July 29, 2013

Some random thoughts on this story, which has been bouncing around the various national news outlets for the last several days:

I waited until now to post a link to this story, because previous articles about it were from Fox, the New York Post, The Daily News, and other outlets I prefer not to use as sources. I don't know if their political leanings make much difference for stories like this, but I guess it's similar to my somewhat rational aversion to shopping at Walmart.

I wonder if other kinds of prejudice contributed to the situation? The man seems to be a native Hawiian, and he's kind of a tough-looking dude, to a mild degree … kind of like someone with a take-no-shit attitude, who probably doesn't naturally elicit compassion.

It seems like he did everything the way you're supposed to do it, complete with followup calls to the airline before and after each stage of his trip.

There are probably three layers to Delta's "epic fail". First, they were probably incorrect when they told Kanaan they could accommodate him at Nantucket. If nothing else, the small size of the airport there, and maybe of the plane that serves the island, should have tipped off the helpline to make doubly sure the equipment would be there. Second, there's the logistical failure itself. There's no reason why even a small airport at this point should lack an aisle chair and a lift. If they do, I think there's a fairly sizable airport not far away that could have loaned them the equipment for the day. What's it called? Oh, yeah, Boston! Third, faced with the logistical failure, did the Delta staff on the scene make the best of a bad situation? How did they try? Did they offer to carry Kanaan off the plane and to his wheelchair? Many wheelchair users rightly deem carrying to be undignified and unacceptable, not to mention unsafe, but since lifts can't be conjured out of thin air, he might have preferred it to crawling. I guess I'd like to know how Kanaan would rate the human interactions he had with flight attendants, separate from the outrage of the airline's equipment fail.

I wonder how many random strangers and fellow passengers witnessed the whole spectacle. I hope for Kanaan's sake nobody, but then again, it might be valuable for more people to see first-hand the gritty, human consequences of corporate ineptitude and insensitivity.

Hopefully, these finer points will be fleshed out by the lawsuit. It's one reason why holding lawsuits and lawyers in blanket contempt is so short-sighted. Lawsuits can really help guide future behavior in useful ways. Of course, it might also end with an out of court settlement designed in part to shield Delta from further bad publicity. I hope that doesn't happen.

Oddballs

Hey Kid: Thoughts For The Young Oddballs We Need So Badly

Linda Holmes, NPR's Monkey See Blog - July 19, 2013

This is off-topic in terms of disability, but it's just so encouraging and specific that I have to share it. Besides, as people with disabilities of whatever kind, we're nothing if not oddballs ... even those of us who wouldn't be oddballs at all if we didn't have a disability.

Linda Holmes is talking about creative people who struggle to produce art of various kinds. For some of us, that's exactly what we want to do, too. But even if you're not into writing, painting, music, acting, or whatever, if you're disabled, I think you are a performer, like it or not. In that case, you might as well make it good, and while you're at it, settle some of your own demons.

That's my roundabout logic for linking to this really lovely article.

Gym Class

Quinn signs law expanding gym class exemption for disabled students

Staff Report, Chicago Tribute - July 28, 2013

This change in Illinois law sounds bigger than it appears to be. The exemption is only for students with disabilities who already participate in sports, specifically adapted sports like wheelchair basketball or track. It doesn't exempt disabled students from physical education generally. I'm not even sure whether a general exemption would be a good idea or bad.

It got me thinking about my own history with "gym class".

In grade school, I went to gym with the rest of my class, and participated with them where I could. When I couldn't, I did a number of exercises and physical therapies with a one-on-one aide.

The same happened in high school, and I earned my P.E. credits more or less like everyone else, stepping back from any activities that I clearly wasn't able to do.  The only other notable difference was that for some reason, I was exempted from having to shower, though I did have to change into gym clothes. I can't remember how that decision was arrived at, whose idea it was, or why. I suspect that it was due to a vague concern about teasing from other students, embarrassment on my part, or both. Looking back, I don't think showering would have been a problem at all; for a variety of reasons, I didn't get teased much at all in high school, and I don't think my classmates would have been any more taken aback by my naked body in a shower than they did with me clothed.

In college, my P.E. requirement was completely waived, no questions asked … including one of Dartmouth's signature graduation requirements, the swimming test. I was very glad of this at the time, but now that I think about it more, I see how curious it was. Dartmouth is a very athletic institution, not so much in team sports, but in outdoor pursuits. They probably could have offered a far wider variety of ways for me to fulfill a P.E. requirement feasibly. I think the decision to waive it was part of Dartmouth's overall approach to disability at the time … which was fairly weak on systemic accessibility, but very accommodating to individual students with disabilities.

I wonder what would have happened if I had asked for adapted P.E. instead of happily taking the waiver.

And The Other Show To Watch This Fall ...

"The Michael J. Fox Show" at the TCAs:

"As much as he has to manage the physical aspects of his neurological disorder, it also takes energy to manage other people’s perceptions of his condition."

That's one of the most perceptive things about disability I've ever read from a reporter not specializing in disability issues.

Ironside

Tweets from an "Ironside" panel at the Television Critics Association convention:

Next up at #TCAs13: NBC's "Ironside" remake w/Blair Underwood and Pablo Schreiber, who's not rocking his Orange is the New Black pornstache.
— Alan Sepinwall (@sepinwall) July 27, 2013

This Blair Underwood IRONSIDE remake just feels inches away from an SNL procedural spoof skit to me.
— Alison Willmore (@alisonwillmore) July 27, 2013

I like Blair Underwood, but IRONSIDE actually has his cop boss say, "There are procedures, dammit, and they need to be followed!" #tcas13
— Linda Holmes (@nprmonkeysee) July 27, 2013

Standard "best actor for the role" answer to why #Ironside didn't cast actor w/ disabilities, but a decent technical reason, too+ #tcas13
— Alyssa Rosenberg (@AlyssaRosenberg) July 27, 2013

+ About 15 percent of the #Ironside role involves flashbacks, so they say they needed an actor who wasn't a wheelchair user. #tcas13
— Alyssa Rosenberg (@AlyssaRosenberg) July 27, 2013

I forgot about the sex scene Underwood does in IRONSIDE, which I was really glad they included. #tcas13
— Linda Holmes (@nprmonkeysee) July 27, 2013

Blair Underwood is being smart and very specific about spinal cord injuries and disabled sexuality, and warming my heart. #TCAs13 #Ironside
— Alyssa Rosenberg (@AlyssaRosenberg) July 27, 2013

Blair Underwood cites MURDERBALL in talking about his IRONSIDE character's sexual activity. #tcas13
— Alison Willmore (@alisonwillmore) July 27, 2013

... Do people with disabilities under 30 even know what Ironside is?