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I just found another disability blogger I really like. Go see Girl With The Cane. 

What kind of tragedy is this?

Kids with lighter started fatal fire

Felicia Krieg, Press-Republican - July 5, 2013

So, that happened.

The three people who died were "older people in need of assisted living". An earlier article made it sound like they were the only three people there for care, and also suggested that they were there for temporary "respite", not permanently. This article makes it sound like there were other residents besides the family.

The earlier articles also didn't mention the cause. It seems like my local paper is rushing to virtual print every time another detail emerges.

I have a sick feeling about it all, and not just for the simple reason that there was a fire and people died … people who couldn't help themselves ... due apparently to "kids" literally playing with fire. Maybe its just my biases kicking in, wanting there to be some larger lesson here about institutionalization, and quasi-institutionalizing in "group homes" and "respite homes" and the like. Of course I realize that some terrible things are just tragedies, with nothing to be learned at all.

The other thing that bothers me is that it seems like the Press-Republican isn't really sure what kind of story this is, either. Again, maybe it's just that I'm biased, but it seems like they are focusing more on the people who escaped, and on the "heroics" of the firefighters than on the fact that three people died ... the emphasis seems off to me.

Another Pillar Of Disability Philosophy

Via A KPOPPER.

Independence

“Independent Living isn’t doing everything by yourself — it’s being in control of how things are done.” -- Judy Heumann

I have read and written this quotation so many times that now it seems rather dull to me. Yet, I still remember how radical and revelatory it was for me the first time I read it, probably 23 years ago. Before then, "independent living" to me meant doing all the things for myself that other people … non-disabled people … do for themselves. Put another way, I thought that if I couldn't do everything for myself, with no help, then I was not independent. I can't say I even thought that. I knew it so fundamentally that the notion didn't even have to cross my mind, much less be picked apart and analyzed by thought.

The Judy Heumann quote didn't fully change my mind, but I think it did more to change my mind more quickly than any other single factor or experience.

The other thing that changed how I saw independence in a disability context was meeting two kinds of people.

One was people with very significant disabilities who had lots of support services in a situation in which they directed their support, and were essentially the heads of their own household.

The other was people with similar kinds of disabilities … not necessarily more severe … who had lots of support and assistance but in a situation where their support systems ruled them, regimented them, controlled them, and supervised them, instead of the other way around. In other words, I saw that although physical resources are important, control and agency are the keys to independent living.

I sometimes hear people object that nobody has total control over their environment, but I think that's just a philosophical trifle … a true statement that isn't really meaningful. Of course nobody has total control, but most people are able to decide when to get dressed and what to wear, when to eat and what to have for dinner, when to go to bed and when to get up, who enters their homes and when, and when they go out of their homes and for what reason.

More importantly, independence means making the bigger life decisions, including those that could affect your well-being or even survival. Part of being a full, independent human is being able to take risks, do stupid things, and make mistakes ... and to live with the results. I'm not saying there shouldn't be safety nets. I fully support very strong safety nets for everyone, whether or not they have disabilities. But I do have a problem with disabled people being forced to give up basic autonomy in exchange for the physical help many of us need. My need for help putting on my socks doesn't give my helper license to tell me how I should live. Helpers aren't supervisors. Yet, in disability world, these two roles are often confused.

Plenty of people with disabilities are denied basic freedoms only because they depend on people and systems for their everyday existence, and are saddled with support systems that do not recognize their full personhood.

Maybe that's why, although my politics are left-wing and I'm closer to being a socialist than a blue-dog Democrat, I can understand libertarians and Tea Party people on some basic, if limited level. Freedom from need is, indeed, important. But there's something special … higher even … about the more abstract freedom of choice, of individual integrity, of human agency. For people with disabilities, especially, it is more precious because so often it is denied us, and denied us thoughtlessly, almost as an afterthought or side effect of pursuing other priorities.

Looking For A Scene ...

As I mentioned recently, I am working on a short video montage of clips from TV shows and films that feature disabled characters and disability themes. Today I'm frustrated because I'm looking for a particular scene that I was certain I'd seen on YouTube, which would mean I could download it and edit it into my project. Now I can't find it again. The scene is from the AMC television show "Breaking Bad", where Walter, Jr., the main character's teenaged son, who has cerebral palsy, has an exchange with his Uncle Hank. Hank is recovering from a shootout (he's a DEA agent), and has kind of given up, feeling useless because of physical injuries that may be permanent. Walter, Jr. basically throws his own disabilities back at Hank, suggesting that if Hank is so useless that he needs to be in a hospital forever, then maybe he, Walter, Jr. should be in a hospital, too.

I like the scene for three reasons. First, I like it because Walter, Jr.'s disability is always noticeable but rarely important to the story. Second, the scene is a reversal of a disability drama cliché … usually it's a non-disabled character telling a disabled character to "snap out of it" and "stop feeling sorry for yourself". Here, it's the other way around. Third, I like that Walter, Jr.'s argument works precisely because his Uncle Hank respects Walter, Jr. so much for his independence and way of dealing with his disability.

As an aside, the character of Walter Jr. is played by actor RJ Mitte, who does have cerebral palsy. In an interview, he says that Walter, Jr.'s impairments are a bit more severe than the actor's own, so that Mitte has to sort of go back to a time when he, himself, used to be more significantly impaired … walking with a bit more difficulty, and speaking with slightly more of an impediment.

If I can't find a way to include this scene in my collection, I'll be sad.

Home Sweet Home?

Mentally Disabled NY Newlyweds Find Home

Frank Eltman, Associated Press - July 2, 2013

Until the couple's ADA lawsuit is resolved, this sounds like a happy ending for Paul and Hava Forziano. I'm glad they are continuing the lawsuit, because there are fundamental rights here to defend, real questions about the role of service providers, families, and the state in the lives of cognitively impaired adults, and possibly an important examination of the meaning of consent, and who can legally give it.

Personally, my bias is for a very, very broad view of consent here. To me, a person would have to be seriously, severely cognitively impaired for consent to sex and marriage should be questioned. Maybe with in-between situations of moderate impairment, there should be an obligation on the part of service providers to facilitate as much sex education and marriage guidance as needed for each person. It sounds like the agency involved here just wanted to ignore the issue altogether, which is probably the root of the problem.

I also still wonder whether another group home is the answer. How about an apartment they could rent, with hired help as needed? Still, this seems to be what the Forziano's were after, so good for them ... and welcome home.

Two Accessibility Rating Sites

A couple of months ago I wrote a blog post about downtown accessibility, and I included a link to a website called AbleRoad. Now there are two, similar sites for rating and looking up business accessibility.

The new site is called AXS MAP, and like AbleRoad, it is a website where you can look up businesses in any area of the US, by name or business type, and find accessibility ratings for those businesses. The ratings are meant to be provided by people with disabilities who use the site. You create a free account, and then you can look up the businesses in your area … or an area you are visiting … and if they don't have accessibility ratings yet, you can add them. If enough people all over the country participate in this, the reference will grow and become more and more useful as more places are rated.

I think this is a fantastic idea. We complain all the time, sometimes with real bitterness, about businesses that are still not accessible, over 20 years after the ADA became law. Yet, I think it's hard to get traction on the issue in part because we lack good data on the extent of the problem. Not only do we not know how many businesses are accessible and which are not, we don't know which kinds of places are more accessible and which are not. We don't know for sure how accessibility might correlate to business size, income, success, or location. It would be great, for instance, to be able to point to nation-wide data that showed that businesses that are not accessible are more likely to fail than those that aren't ... but we don't know that, because we don't have the data. Collecting that data is a huge job, but mass collaboration websites like AbleRoad and AXS MAP might just be a way to do it, or at least make real progress.

That's why I feel guilty for only having rated a couple of places in the last two months, despite having created an AbleRoad account and installed the app and everything.

But, which site should we use?

AbleRoad and AXS MAP seem quite similar. Both use practically the same concept ... they are references but also data collection tools ... and both rely on users to make it better over time by adding more and more accessibility ratings. Both sites have smartphone and tablet apps.

AXS MAP seems a little sleeker and simpler to me than AbleRoad, though that might just be personal taste. Also, AXS MAP has more funders and partners, which of course can be helpful, but I don't think it guarantees success. I was kind of hoping I'd strongly prefer one site over the other, but they are both pretty good.

I like both sites, so if I do decide finally to get busy accessibility-rating places in my area, I might add my ratings to both sites. If you hate that businesses are still full of barriers, use one or both of these sites. They may be the best way for people with disabilities to do something positive about the problem.

Here are links to the two sites:

AbleRoad

AXS MAP

Music For A Sunday Evening

The Dandy Warhols cover Eddie Cochran

The weather is pretty nice today where I am, but out west it's HOT. These guys look kind of sweaty, too. And stoned. The comments for this AV Undercover video were pretty harsh, but I really like this downbeat version.

"The Onion" Nails It

Lucky Old Woman Getting Wheeled Around Airport

The Onion, June 28, 2013

True, absurd, and sadly understandable.

My particular disabilities put me in a sort of in-between spot in airports. I can walk, so given unlimited time and places to sit and rest along the way, I can get to and from my gates without wheelchair assistance. The problem is that I'll end up a puddle of oxygen-depleted mush. If the physical drain on the average non-disabled person navigating an airport is a 6 or 7 on a 1 to 10 scale ... tiring and unpleasant to be sure ... for me it's like 12. However, when I do ask for wheelchair assistance or ride one of those electric carts, my effort goes down to something like 3. So technically, it is easier for me than it is for most others when I use assistance. It's just that it would be much greater if I didn't.

That's not true for every person with a disability in every situation, but I think it is true for quite a few of us. Which is partly why we sometimes feel guilty about taking assistance or using disability accommodations, even though we shouldn't feel bad about it at all.

Awesome Sauce - ASL Edition

How Do You Say Shaolin in Sign Language? ... Meet the interpreter who has signed for the Wu-Tang Clan, Killer Mike, and the Beastie Boys.

Amy K. Nelson, Slate.com, June 21, 2013

Not much to add; the story mostly speaks for itself. Via Media dis & dat.

Actually, I'll add one thing. The awesomeness here isn't that a Sign Language Interpreter thought to interpret live rap performances. I expect that goes on quite a lot, maybe more than the article would suggest. What made me smile is how the performers themselves are first amazed and transfixed, then so respectful of the interpreter's skill and professionalism.

YouTube clip via bunnika's tumblr.

More About Rep. Duckworth and Who's Disabled

Tammy Duckworth's Impassioned Shaming Of A Faux-Disabled Vet

David A. Graham, The Atlantic Monthly - June 27, 2013

Duckworth shames IRS contractor for questionable disability status

Jake Miller, CBS News - June 26, 2013

Why Is Tammy Duckworth's Disability Rating So Low?

Marc Herman, Pacific Standard Magazine - June 27, 2013

The more I read about this, the more clear it seems that Mr. Castillo's "30% disabled" status really is bogus. And even if he did injure himself in military prep school in a way that still causes him some pain, his disability is only "service-connected" in the most bureaucratic possible sense.

These articles also do more to emphasize that part of the outrage is about the nonsensical way that Rep. Duckworth's disability is rated compared to Mr. Castillo's. So, there are probably two scandals here ... Mr. Castillo misusing a poorly-designed disability determination system for personal gain, and the fact that the system itself is so poorly designed to begin with.

So yes, her anger is understandable and probably justified. But the systemic confusion over how to determine who is disabled and who isn't just underscores how risky it is for individuals ... even individuals with disabilities ... to call people out for faking. I was thinking about how Rep. Duckworth could have mitigated this, and although it's also kind of annoying when pundits and bloggers say, "What she should have said is ...", I'm going to do that a little bit.

If she had prefaced her questions and comments by acknowledging that it's often hard to spot a disability faker, and that people have very serious disabilities you can't see, and then went on to underscore that the evidence is overwhelming in this case, I think the whole incident would have been less troubling, at least for me.

Rimshot

Smart Ass Cripple got me good. He's always funny and he really does seem to know all the interesting "cripples". My lack of commitment in high school Spanish class helped, too. But, in the era of Google, jokes like this just can't last.

Because I'm a pedantic nit-picker, I'll also say that he was a bit out of date in his characterization of disabled sports. I think now that most people picture the Paralympics more than the Special Olympics. Though maybe he was joking about that, too.

I think she's right, but ...

Rep. Duckworth is getting a lot of praise and some criticism for calling out a man who apparently exaggerated a possibly minor injury that was by no normal mode of thinking service-related in order to gain advantages in federal contracting. I qualify these statements because I'm very uncomfortable with one aspect of Rep. Duckworth's condemnation.

To be clear … I think she's probably got it right about this particular guy. My instinct, too, is that he cynically used a fairly minor injury in order to exploit a loosely-structured program for his business' benefit.

However, I think it is damaging in completely different ways when one group of people with disabilities goes after another, comparing the relative severity and pain of disabilities, and especially when they go after people who "look fine", as if they must be cheating. I think it is almost more important to teach people not to judge disabilities on outward appearance or superficial evidence, than it is to catch real cheaters. The bottom line is that watching this video clip, I can't tell whether or not Mr. Castillo is in pain, or how much pain. His claim that he can't play with his kids is almost certainly ridiculous ... and yet, how do I know?

What makes the difference in Rep. Duckworth's favor here … just barely … is her ultimate point. When a handful of people really do cheat, it damages the credibility and viability of entire programs.

Still, I cringe whenever I see self-appointed disability police deciding who is and who isn't sufficiently disabled. That is a dangerous road.