(Halloween) Photos Of The Day

"6 of the Scariest Abandoned Mental Asylums in America"

From HowStuffWorks.com via the Independent and Visible Tumblr blog.

I'm posting this picture and link to more like it, not to trivialize the abuses of mental health care with the levity of Halloween, but to emphasize the true horror of institutionalization of the mentally and physically disabled.

Awakening

Is this college application season?

I was just thinking about when I was applying to colleges. If I’m right about the timing, it would have been the fall of 1984 that I spent sorting through the application packages of the 5 colleges I chose to apply to, and working on those application essays. I really wish I still had copies of those application essays, but I don’t. I do remember that somewhere in the essay portion of each application, I talked about my disability.

My recollection is that I described my disabilities with only a moderate amount of detail. I then made some kind of statement that even though I had disabilities, I emphatically didn’t want to pursue any kind of career or even interest in disabilities in general. Essentially, I made as passionate a case as I could for avoiding becoming part of any sort of disability community. At that time, in my head, it seemed like an honorable, even heroic stance. And for what it’s worth, I got 4 college acceptances, including my first choice, so I guess nobody saw my writing about this and said “Yuck!”. Nobody in my high school years ever introduced me to another way of thinking about disability. I didn’t know anyone else with a disability. The only images and ideas about disability I was exposed to were either intensely medical … which bored me, and pitiable ... which of course I wanted no part of.

It wasn’t until the Gallaudet University student protests for a Deaf President, which took place during my Junior year in college, that I first started to absorb the idea of disability as a social issue, something like race and gender. That’s also when I first saw or heard of disabled people being bad-ass as disabled people, not as people overcoming or masking their disability. So really, what started to turn me around wasn’t any particular person or role model, and it didn’t come from an intentional process of education or persuasion … it happened because an event happened that had nothing to do with me directly, but which I felt connected to in a way that surprised me.

I wonder if this is still a common progression for young people with disabilities? Or, are there more opportunities now for youth with disabilities to learn about disability from different perspectives, and have earlier “awakenings” to their disability identities?

"Consumer Skepticism"

At this point, I continue to watch AmputeeOT's weekly videos because she's really good at making them, not so much for the content itself. That said, I can relate to Christina's skepticism about a "new and improved" prosthetic that everyone raves about.

I use a ventilator at night. For 27 years I used essentially the same make and model ventilator … generally known as an LP6. When my respiratory therapy company told me they were phasing out the LP6 in favor of a new make entirely, I was worried. I don't know what it's like to walk on a prosthetic leg, but I'll bet people get used to the feel of them much as I got used to the feel of how the LP6 delivered it's breaths. On paper, of course, ventilators have to deliver the same thing, since my needs haven't changed. It would do no good for a new company to advertise that their ventilators breathe "faster" or "pack a stronger punch" … you don't want crazy breathing tricks from a ventilator, you want consistency. But I swear it feels different, almost like every fingerprint is different. At first, it felt very strange being on it. After a few days, though, I got used to it. Now, I'd be nervous trying a different one. Plus, the new ventilator is smaller and lighter, and it's alarm system has more options than the LP6.

So, I was skeptical, for very, very personal reasons, and now I'm sold.

Reconsidering "Inspiration Porn"

When I like it, it's a cool photo. When I don't like it, it's inspiration porn.

I've been reconsidering the concept of "inspiration porn" lately, since I started reblogging disability-themed photos I find on other blogs and websites. What is the difference between fun, or empowering images of people with disabilities and annoying, damaging "inspiration porn"?

I don't have it all figured out, but here are some factors to think about:

- It almost never helps to include a caption, especially if the caption is in the form of a simplistic slogan or bland platitude. A photo of a woman in a wheelchair doing a beautiful interpretive dance speaks volumes. Adding a caption like, "Let your inner beauty shine!" or somesuch ruins it.

- Variety helps. When the same photographer or website shows nothing but disabled people being athletic, I get the idea that I'm supposed to think that sports are the ultimate demonstration of personal achievement. The same goes for repeated images of disabled people in sharp business suits and dress. These images can serve a purpose when combined with other kind of images, but by themselves they suggest that disabled peoples' proper goal is to always appear and act as "normal" as possible.

- I can't stand sentimentality, especially when it feels cheap and unearned. There are a few instances of pop culture that will make me cry and not feel manipulated into crying … but very few. Obviously, sentimentality is a very widely employed aspect of disability images. I think this is the single biggest factor for me in judging images I am drawn to and those that offend me.

Maybe there's a project here in this topic … collect disability-themed photos found on blogs and social media, post them in groups, and "deconstruct" them to figure out what makes some genuinely positive and others "inspiration porn".

Too Sentimental? Close, But I Like It

A friend from college posted this on my Facebook Wall. Thanks Jamie! From Viralnova.com.

Ratify the CRPD

The UN Convention on the Rights of Persons with Disabilities, (CRPD), is about to be considered again by the US Senate for ratification. Last winter, the Senate fell 5 votes short of ratifying 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:

Convention on the Rights of Persons with Disabilities

     Frequently Asked Questions

     More Details

Facebook - Ratify the Convention on the Rights of Persons with Disabilities

Andrea Shettle's Tumblr

Andrea Shettle's Twitter Feed - @AShettle

We Can Do This If We Try

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.

Photos Of The Day

From the Boundless and Bare Tumblr blog. Follow the link to see the whole photo set.

Disability News

Experience of Voters with Disabilities in the 2012 Election Cycle

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.

Controversial disability benefit changes delayed

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.

Disabled greeter fired for clocking in late after lunches

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.

Photo (Sort Of) Of The Day

From the Disability Curious Tumblr blog.

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.

Photo Of The Day

From the Disability Curious Tumblr blog.

There's More To TV Disability Than "Ironside"

While I am sad that the new “Ironside” has been cancelled, I’ve been catching up on two TV shows that I put off watching for a very long time, that offer incredibly rich, textured, and I think realistic depictions of disability. I’m talking about “Friday Night Lights” and “Parenthood”.

"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.

I've watched all of "Parenthood", up to the latest episode of the new season. I'm impressed with the Max Braverman character himself, but what's most interesting to me is how his parents deal with his Asberger's. Some of their reactions are predictable and played for melodrama. And while the perspective of the show seems to be that Max is a "good kid" with a markedly different way of thinking and interacting, we mostly get all of this through how others react to him. I'm still waiting for an episode where we literally get Max's point of view. However, whether intentional or not, I think the show also subtly demonstrates a key irony of the situation. Max's Asberger's appears to others to be a pathological form of selfishness. Yet, for tall their kindness and obvious love for Max, both his father, Adam and his mother, Kristina are actually more focused emotionally on their own wishes and needs in regard to Max. Kristina wants Max to go to a school dance he doesn't want to go to ... not really because she thinks he'll ultimately enjoy it or benefit from it, but because she has cancer and just wants to see her son do something normal and heartwarming. Adam keeps trying to get Max to take an interest in his job, and tries several times to arrange these sort of idealize "father and son" outings that Max couldn't care less about. This isn't constant, it's only occasional, but when things like this do happen we get to see how fundamentally "selfish" Max's parents are, even if neither they nor the show ever really say it. On a moment to moment, day to day basis, they are great with Max. Over almost 5 seasons, a more subversive message has crept out ... it's all about them, not really about Max.

So, that could be seen as a "negative" or "bad" portrayal, but I think it's quite useful, since I suspect it's a pretty realistic picture of the complex motives involved in parenting a kid with Asberger's and being a kid with Asberger's.

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.