Tuesday, October 29, 2013
Ratify the CRPD
The CRPD's purpose is to outline the basic principles of how the human rights of people with disabilities should be respected. Like the Americans with Disabilities Act, it focuses on equal opportunity, equality before the law, physical accessibility and design standards, and the concept of reasonable accommodations.
The CRPD's impact on US law would be negligible, since the US already has laws and policies that are a model for everyone else. The convention would have the most positive impact in countries where the rights of people with disabilities are not widely respected, where the status of people with disabilities is sometimes far worse than our worst experiences here in the US. We complain every day about leftover physical barriers, stubborn attitudes, and inept bureaucracies, but once in awhile we need to remember that things could be so much worse, and are in other parts of the world.
The CRPD encourages each UN member country to pass legislation to protect the basic human rights of people with disabilities, legislation that would closely resemble the Americans with Disabilities Act. It also requires member countries to report annually to the UN on the status of the rights of people with disabilities within their countries. Again, this would be no big deal here in the US, but in some other parts of the world, it might be the first time governments have been prompted to focus at all on the rights and status of people with disabilities. Like most United Nations policies, it wouldn't change the world overnight, but it would provide a template for change, and help build momentum for disability rights activists around the world to make their countries better.
So, why didn't the Senate ratify the treaty last year? It fell short mainly because of two somewhat related concerns.
First, there is a small but passionate group of people here in the US who oppose pretty much anything and everything the United Nations does or tries to do. They believe that the UN is an illegitimate organization which poses a continual threat to American sovereignty and freedom. These folks oppose the CRPD not because of anything to do with disability, but on general principal.
Second, and more specifically, there is one section of the CRPD, Article 7, Section 2, that says:
"In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration."
This sentence has been interpreted and publicized widely to American homeschoolers as posing a threat to their ability to homeschool their children. I guess the idea is that somehow US ratification of the CRPD would lead to the federal government overruling parents' decisions about their children with disabilities, using "best interests of the child" as a justification. In the literal, legal sense this is ridiculous. Many, many other legal and public opinion dominoes would have to fall first before any such thing happened, and ratification of a UN rights treaty could never by itself make this happen.
I think this concern is, like the first, more of a philosophical and emotional one. Homeschoolers of various kinds often feel disrespected, embattled, and alone. So do many parents of kids with disabilities, whether they homeschool their kids or not. Both groups have ambivalent relationships at best with their local schools, education departments, medical professionals, and government agencies ... all of which say that their priority is "the best interests of the child". I can understand how parents' necessary vigilance can lead them to jump at shadows, especially when there are more ideological actors making sure they see those shadows in the scariest ways possible. But in this case they are shadows, nothing more.
Do I think it would be the end of the world if the US fails to ratify the CRPD? No. It might not even do much harm to the CRPD itself. The US is one country, and our failure to ratify won't necessarily doom the convention. But it would weaken it, be an embarrassment for us, and provide an "out" for countries that would prefer to continue prioritizing other issues and people … a practice that we who have disabilities are, sadly, quite familiar with. It's not hard to imagine other countries saying, "Why should we put ourselves out to make buildings more accessible or stop institutionalizing children when the United States won't even ratify the CRPD?"
Here are some links for more information on the CRPD and what you can do in the days and weeks ahead to push for ratification:
Andrea Shettle's Twitter Feed - @AShettle
This is the best website of any kind about the CRPD that I've seen so far. It directly addresses addresses all of the objections to the CRPD … in detail.
Monday, October 28, 2013
Disability News
National Council on Disability - October 24, 2013
I have a confession. I have never really understood the level of intensity that some disability rights advocates have about polling place accessibility. I have never fully bought into the widely accepted goal of this advocacy, to make in-person, public voting accessible to all people with disabilities. It has always seemed to me that instead of trying to make polling places accessible, we ought to at least consider advocating for something like universal absentee voting … like voting by mail or voting through the Internet. In other words, why not work on phasing out in-person voting and polling places entirely? However, reading this NCD report, I think I have gained a new understanding of the fact that physical access is only part of the story. The real injustice is that in-person voting, even when it is technically accessible, is too often a humiliating and needlessly troublesome experience for people with disabilities. Voting shouldn’t ever make a person feel more disabled. It should never make anyone feel like a burden, like someone in need of special attention. When a voter can’t physically vote at their polling place, it’s bad. But it’s also bad when a person with a disability does manage to vote, but only after negotiating a series of bureaucratic hurdles, after proving their worthiness to a bunch of untrained volunteer poll monitors, or after causing uproar and confusion among those workers simply by their presence. What I read in the NCD report isn’t so much that people are denied a vote, it’s that to exercise their vote they are still too often put through the ringer and made to feel more disabled, more set apart, than they do for the most mundane daily activities. I see a voting system that is decades behind restaurants, movie theaters, retail stores, workplaces, and even schools in how people with disabilities are integrated and treated with respect. Physical barriers are a problem. But it seems like the attitudinal barriers coming from the human beings involved are far worse.
Rowena Mason, The Guardian - October 25, 2013
Disability advocates here in the United States should pay close attention to what’s going on in the United Kingdom, because I fear that similar “reforms” may be just over the horizon for us. Of course, the UK’s system is already quit different from what the US does. I’d venture to say that their system appears to be better, or at least simpler, even with the proposed changes. But it seems like what the British are trying to do are the kinds of things that sound good in abstract discussion, and look good on paper, but cause more problems than they solve when applied to real people.
Vanessa Guthrie, The Durango Herald - October 25, 2013
Did you ever hear or read about a disability discrimination story and just get some weird vibes about it? I mean, not about the incident itself … who did what to whom … but about something else that may or may not put a different perspective on it? I get a weird feeling about this thing. It bothers me that the article doesn’t have a single quote from the man who lost his job. It bothers me that what his family would have preferred is that Walmart talk to his wife about the problem, not him. I get that his disability involves Traumatic Brain Injury, but that doesn’t necessarily mean he’s incompetent. It doesn’t mean his employers should funnel all negotiations and communications through his wife. Maybe there’s no “untold story” here, but it does seem like there’s an unheard voice, at the very least.
Sunday, October 27, 2013
Saturday, October 26, 2013
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.
Friday, October 25, 2013
There's More To TV Disability Than "Ironside"
"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.
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.
Thursday, October 24, 2013
Camp Goodwill
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?
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?
Wednesday, October 23, 2013
Last Chance To See It
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.
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