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.
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.
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.
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.
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.
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.
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.
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.
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.
Rep. Duckworth is getting a lot of praise and some criticism for calling out a man whoapparentlyexaggerated apossiblyminor 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.
I got an Action Alert today encouraging everyone to contact their Senators and urge them to revive US ratification of the United Nations Convention on the Rights of Persons with Disabilities. Last December, the Senate voted down ratification, mainly because a significant number of Republican Senators either felt or were convinced to feel that the UN convention would have unintended consequences, mostly for parents of children with disabilities.
Specifically, a handful of conservative groups claimed that the convention would threaten parental authority and home schooling, citing a line stating that "the best interests of the child shall be a primary consideration" in whether the rights of children with disabilities are being respected.
I've started reading the convention from start to finish, and when I'm done, I'll write more if I have anything to add. My initial sense is that objections to this disability rights convention isn't about the convention itself; most of the people who oppose it oppose the United Nations itself, and many of them have a massively inflated conception of the UN's practical power.
As I read, it also seems like there are many, many more sections and provisions that would help preserve family rights and protect family integrity … that should, in fact, appeal even more strongly to conservatives than to progressives.
Finally, I really think that with UN human rights initiatives, you have to think in terms of countries where traditions and practices may be very, very different from ours. We think we're divided on moral, family, and sexual values here in the US, but compared with the world at large, conservatives and liberals here in the US are actually pretty much on the same page. I'm not saying we are vastly more moral or ethical in the US or "The West", but I do think that the disability rights standards in the UN convention are far, far more of a practical challenge in some countries and cultures than to American society.
I just had two thoughts about how to deal with non-disabled people calling people with disabilities "inspirational" just for doing ordinary things:
1. Yes, in a way it is inspirational that he / she is able to … (have a paying job, drive a car, live independently, etc.) … but it shouldn't be inspirational. The only reasons it is inspirational is that there are still so many unnecessary barriers that prevent a lot of people with disabilities from doing these ordinary things. Are you willing to support policies and practices that make these things "expected" rather than "inspirational"?
2. Let's create an agreed-upon list of people with disabilities who are "inspirational" in a more profound sense … people who far exceeded expectations and helped others do the same, who helped make the world a better place for all people with disabilities. Nominees? Ed Roberts comes to mind, but I'm sure there are more and that there would be a lot of deliberation about it, like there is for other "hall of fame" type lists for other topics.
I think the "30 Rock" story … the people interviewed, how it was filmed, and especially Harry Smith's pro vs. con comments at the end … laid out the issues pretty well for what had to be an audience that mostly had never heard of there being any controversy about Goodwill Industries or other sheltered workshops.
The only thing that frustrated me is that they never adequately dealt with the argument the Goodwill CEO kind of put forward, that by their definition at least, most of the workers they employ are significantly less productive, because of their disabilities, than non-disabled workers. In other words, the sheltered workshop argument is that this is NOT an "equal pay for equal work" situation. It is not equal work, which is why the pay is below the usual minimum wage. The alternative, by this interpretation, is for these folks to have no job at all, because "normal" workplaces have assume that everyone is at least in the same ballpark in terms of qualifications, productivity, and quality.
The advocate from the autism group makes a decent point that all workplaces have inefficiencies and good and not so good workers, but they still have to be paid at least minimum wage. But this only partially answers the productivity question. What the Goodwill CEO was trying to say, diplomatically I guess, is that these workers aren't just slightly inefficient, like what you're used to in an average workplace … they are fundamentally less productive, will never be more productive, and so it's a blessing for them to have a job at all.
That's it. That's the only real argument they have. And it's been persuasive since the 1930s, because that is the basis of the law that makes paying these disabled workers less than minimum wage.
By the way, when the Goodwill CEO mentioned "elitists", he was invoking long-standing divisions and disconnects within the broader disability community. I remember many times discussing this sort of issue with people who worked mostly with people who had cognitive impairments. One of the most common arguments they made was that my standards of fairness were all very well for people with my kind of disabilities, but didn't apply to people with significant cognitive disabilities. In effect, they were saying that they understood that a sheltered workshop would be totally inappropriate for me, but that I failed to understand that it is appropriate for some.
I could almost buy that, except that in practice, most sheltered workshops aren't that picky about who they "employ", and have plenty of people "working" in them that could get and keep a mainstream job, given a little ingenuity, support, and training aimed at advancement, not treading water.
What clinches the argument here is that more and more sheltered workshops have already been closed, with resources transformed to provide extra support to people doing meaningful work in mainstream community jobs, for minimum wage or above. This includes not just the so-called "high functioning" people, but people with more severe disabilities. Basically, I think Harry Smith summed it up very well when he suggested that this is simply an out of date model that's long overdue for an overhaul.
It would be great if NBC did a followup story showing how other models, like supported employment do a better job for the same kinds of people. A few more thoughts: - Families of people with disabilities who are in these sheltered workshops do often support and defend them, but their concerns and perspectives aren't always the best for their adult "children". Many, though not all parents prioritize stability, certainty, and perceived safety over almost all other goals, including fair pay, fulfillment, and what the individuals actually want. - The CEO salaries thing ... I usually think that arguments about CEO salaries are overblown, at least in terms of impact. Cutting a CEO's salary in half, or quartering it, usually wouldn't make that much of a difference to the average workers. However, in this case, the difference is so extreme that I think radical change is in order, and might actually be possible. - The blind woman interviewed, who used to work at a Goodwill sheltered workshop, said that her low wages barely even paid for her transportation to and from work. When our local sheltered workshop agency stopped providing van rides for sheltered workshop workers, my agency got lots of calls from counselors who were trying to figure out how to get "their clients" to and from "work" in an affordable way ... and they explicitly made the same point. For some, it cost more to attend than they made in wages. This was the counselors talking ... employees of the very same organization. My point: pretty much everyone involved knows the system is at best deeply flawed and nonsensical. - For what it's worth, the State Vocational Rehabilitation in my state made a policy change a few years ago in which placing a person in a sheltered workshop would not longer be considered a final, successful job "placement." This is important, because the number of successful placements is how everyone in Voc. Rehab. is judged. So there's no longer an incentive for counselors to shove all their "difficult" cases into sheltered workshops. They may place some people in sheltered workshops for short-term training, but only with the expectation of eventually moving out into a regular job.
