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Because I'm a pedantic nit-picker, I'll also say that he was a bit out of date in his characterization of disabled sports.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.
Last Friday, the NBC primetime news program Rock Center did a story about sheltered workshops, and the labor law provision that allows them and similar organizations to pay certain workers with disabilities less than minimum wage. I didn't see the show, but I have read the accompanying article on the NBC website, and I'll watch the segment online shortly.
The disability organization I worked for never had sheltered workshops, and in fact Centers for Independent Living uniformly opposes them. However, there are a few sheltered workshops in my area, and we often assisted people who worked at them. My take on the issue has always been that they are at best a relic of an earlier time, and at worst genuine exploitation. Unfortunately, I think that most of the criticisms against sheltered workshops and paying sub-minimum wage leave out some important aspects that both help explain why such a seemingly unfair system ever got approved, and how the system could be changed without unintended negative consequences for the workers.
I'll have more to say on this later today, or maybe tomorrow after I do some more thinking and reading about it.
The whole article is good reading, but here's the "money quote":
Playboy: "You are aware that you're a sex symbol, right? Some might even call you a DwILF."
Dinklage: "DwILF, as in Dwarf I'd Like to Fuck? That's very clever. Honestly, I think there's an irony in all of this. I take it with a grain of salt. They'll say, "Oh, he's sexy," but women still go for guys who are six-foot-two. It's nice that people are thinking outside the box, but I don't believe any of it for a minute."
Today is the first day of Summer Vacation in my local school district. I wonder what the kids with disabilities are going doing this summer. I also wonder what's next for the students who graduated or "aged out".
One of these days I'll describe my school experiences, but not now. My thoughts about education and students with disabilities are mostly based on things I saw and learned about when I was working at our local Independent Living Center.
Let me start by saying that I met a lot of really great teachers and counselors who all wanted the best for their students. My issues with education, especially "Special Education", are systemic and ingrained ... a culture, really, that reshapes individuals more than individuals shape it. At least in our area, we seem to have more than our share of really good, decent, dedicated and forward-thinking teachers.
What disturbed me most in my encounters with education was the feeling ... hard to prove anecdotally ... that there are at least a few really smart kids with disabilities in each district who are unrecognized and wasted by a system mostly geared towards remedial work, behavioral control, and maybe, if they are lucky, some life skills training. History, literature, math, science, critical thinking, philosophy? Maybe, if we have time. It's like Special Ed teachers actually buy into and endorse the petulant teenagers lament about academics, "When am I ever going to use this?" To them, it seemed, diplomas and degrees really are just gate-keeping pieces of paper.
At conferences, any comments or questions I posed about maximizing academic aptitude and achievement were treated like they were embarrassingly off-topic ... met with polite nods and silence. I felt like a peacenik at a NATO summit; theoretically we had the same goal, but with vastly different assumptions, priorities, and tactics.
By the way, that analogy includes the very real possibility that as the "peacenik", I was being sadly naive.
I accept that interpretation, but to me, on some elemental level it feels like a disability song.
"Two Headed Boy" originally appeared on the album, "In the Aeroplane Over the Sea". It is one of a handful of albums that when I listened to it for the first time, I listened all the way through, stunned, and then immediately listened to all of it again.
I like Dresden Dolls, too, but a little of them goes a long way.
I've started working on a montage of disability-related video clips to put on the front page of the eventual "Disability Thinking" website. So far I have collected 46 clips of various lengths that I'll need to edit down to something like 5 minutes. Most of the clips are from TV shows and movies, with a few TED Talks and Paralympics clips thrown in. I'm not sure what I want the montage to say; I'm trusting that after sorting out the best bits, some kind of theme will occur to me. I'm just a little bit worried that after hours of work, the little movie will turn out trite or syrupy, instead of fresh and a bit funny. With disability images ... both still and moving ... the line between awesome and ugh is very, very thin.
