I Can Stop Blogging Now, It's Been Done Perfectly

Dear 16-year-old Stella,

Stella Young, Letters To Thrive - October 4, 2013

I just read this “Letters To Thrive” contribution by the Editor of Ramp Up, a disability website affiliated with the Australian Broadcasting Corporation. It was posted earlier this month, and has been reblogged many times, so I’m sure tons of people have already read it. But everyone needs to read the letter, so I am posting a link to it here. I want people with disabilities, young and old, male and female to read it. I want parents of kids with disabilities to read it. I want teachers and counselors and disability service providers to read it. And it couldn't hurt for everyone else in the world to read it, too.

A lot of it is about sex and relationships, but it’s about so much more than that, too. If aliens landed and destroyed all disability-related writings except this one, I think we’d still be in pretty good shape. I really almost feel like I can stop blogging now, because this says it all.

(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.

Camp Goodwill

Fighting to reopen against long odds

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?

Last Chance To See It

The last episode of the new "Ironside" is on tonight at 10 PM Eastern on NBC. I think it's been improving episode by episode, but it's been cancelled.

A New Use For Pumpkins

AmputeeOT gets into the Halloween spirit.

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.

Photo Of The Day

"And here we have our Board President, Mark Christiansen, taking a nice nap while his wheelchair is repaired by AD Kim Meichle."

From the Independent and Visible Tumblr blog.

When They Make Things Worse

October is Disability Employment Awareness Month, a publicity campaign mainly aims at asking employers to hire more people with disabilities. It might be good if they'd also ask employers to stop doing things that make it harder for employees with disabilities to keep their jobs.

One of the disability bloggers I follow, "Crazy Crip Girl", has been going through a long, slow-motion disaster at her workplace. The gist of it seems to be that the supermarket where she works did a big remodel, which included making all the checkout counters higher than they used to be. I don't know whether they are still within ADA specs, but they are too high for this wheelchair user to work as a cashier, meaning she's been bounced around from one position to another. At first, management assured her that the renovations wouldn't mess up the accessibility of her work area, and obviously that's exactly what happened. Then they said they'd put in some kind of ramp / platform so she'd be raised up to compensate for higher counters. They said it, but didn't get around if for weeks … for months? Finally, after yet another soul-crushing meeting, they finally had maintenance put in that ramp, which took them just a day to accomplish. Then, she comes back after a weekend to find they've taken the ramp out; they said it was a safety hazard.

This seems like a textbook case of personal advocacy and systems advocacy going together. Raising the height of the checkout counters may have cost a wheelchair user a job. I'm sure it's also caused inconvenience for wheelchair using shoppers, and shoppers who are very short, like me. I wish they'd commit to a proper, individualized "reasonable accommodation" for "Crazy Crip Girl". But it would be even better if they were forced to redo all their recently remodeled counters, to make them lower again.

They can't say nobody warned them.

To get the story from "Crazy Crip Girl" herself, 

Read this …

Then this …

Then this …

That should get you caught up on the latest developments, and some of the great comments and ideas others have sent.

Photo Of The Day

From the Disability Curious Tumblr blog.

Disability News

Supreme Court to review execution of mentally disabled inmates

Mark Sherman, Associated Press - October 21, 2013

Florida uses a strict IQ measurement to determine whether a person is "mentally disabled" for the purposes of prohibiting or allowing the death penalty. The court will look at whether such as simple and definitive cutoff, which doesn't take into account any other factors, is Constitutional.

Ga. to Review Tough Death Penalty Provision

Kate Brumback, Time Magazine - October 20, 2013

Georgia uses the standard of "beyond reasonable doubt". It sounds like they do consider more than just an IQ score, but that their overall bar for proving "mental disability" is very high. I guess it means that they wouldn't execute someone if a jury said, "He's definitely mentally disabled", but they would if they said, "He's probably mentally disabled."

Death penalty cases involving disabled people are confusing to me. I oppose the death penalty, and I hate to see disabled people punished when they might not really process what it's all about. On the other hand, I worry about messing with or perhaps expanding legal mechanisms for "proving" people are incompetent, in whatever context. Are there any lawyers out there who know whether widening the group considered "mentally disabled" in terms of the death penalty might also expand the group cognitively impaired people people not allowed to make their own life choices? If the Supreme Court decides that while the dividing line is a 70 IQ, 72 is "close enough", will more adults end up under guardianship of their parents or of agencies?

Suit filed in disabled Md. man's death in custody

CBS / AP - October 18, 2013

It sounds like the lawsuit may be based a lot on technicalities and specific medical evidence, not so much on the broader issues. That's probably okay. In terms of deterrence, the main thing is that Regal Cinemas and the mall company might re-evaluate their policies on how to handle unruly customers ... including maybe training staff and security on how to recognize and deal with people who have cognitive impairments.

Another way this could go is that movie theater companies might start requiring disabled people to have supervision, or order their staffs to not interact with them at all. If someone with Down Syndrome decides to go to a movie unaccompanied, after this incident and after a winning lawsuit, will managers just say, "Shit, I don't want them in there alone. Who knows what they'll do?!" Never underestimate a municipality or a conglomerate's ability to learn the wrong lessons from a tragedy.

==========

I set my Google News page to find disability-related stories using keywords, "disabled" and "disability", and I pick a few that interest me.

Photo Of The Day

From the Disability Curious Tumblr blog.

Bummer

NBC sets 'Community' return, cancels 'Ironside' and 'Welcome to the Family'

Alan Sepinwall, HitFix.com - October 18, 2013

I'll have more to say about this later in the week. Right now I'll just note two things:

I'm disappointed that the new Ironside didn't make it, but also that nobody in the TV critic community seems to care.

I still haven't watched last week's episode of the show, which I suppose means it really wasn't very good.

Air Travel Tips

AmputeeOT's video this week is about traveling by air as an amputee. As usual, she has a very optimistic outlook on things. Travel for people with physical disabilities doesn't always go smoothly, even when you do plan ahead. At the same time, she's pretty realistic, and everything she says makes good sense. And anyway, this blog sometimes gets a bit bleak, so I like to balance it out with some lighter stuff once in awhile.

Quote

Just read this. Had to share it:

"I have heard a thousand times over, 'I’d rather be dead than in a wheelchair.' Oh. OK. Then could I have a taster on hand before I eat dinner at your place?"

 -- Disabilityaware.tumblr.com

Photo Of The Day

From the Disability Curious Tumblr blog.

A Simple Rule ...

How about this for a "rule" to help people avoid saying things that annoy people with disabilities? …

Whenever you think you've hit on a very clever turn of phrase that you think will make a unique and positive statement about people with disabilities … forget it. Puns, creative spellings and syntax, reversals of meaning … they all sound great and wise and original in our heads, but they usually fall flat when spoken or written, and when the subject is disability-related, they are almost never original. As a person with disabilities, I guarantee you, whatever brilliant bon mot you thing you've come up with about disability, or some "new" way to be politically correct about it, we've heard it before, and we we are underwhelmed.

If you're going to say something about how you think about us or about disabilities, just say it normally. Don't try to be clever or super-insightful.

Thank you.

Followup: From An Old Familiar Place

I thought of a couple of things late last night, after I reblogged and commented on that account of how a young woman with Cerebral Palsy was treated by an ER nurse.

The story made me instantly angry in a way that very few things do. I shared it because of that, and because I think it's important to remember that sometimes, things really are as bad as we say they are … that while being a chronic misanthrope isn't healthy, it isn't always entirely wrong.

What I only thought of later is that this was a somewhat rare case when a person's fundamental ableism was in the raw, explicitly stated. In a way, that's a good thing. Usually, we don't actually hear people say we're not a "real person". Instead it's a tone of voice, a look, a reticence. In medical situations, it often manifests in a subtle disconnect. They ask us questions and we answer, and their responses and followups suggest that our answers were not accepted at face value. From there, it progresses to where every conversation with a doctor or nurse has a subtext … like they think something about us that they're not saying out loud. And of course, we feel paranoid for thinking that. It can be a real mess.

One other thought. What the nurse said seems very extreme, something probably very, very few people believe. It's one thing to be uncomfortable around people with disabilities, or have no patience for our "special needs", but it's quite another to assert that we are not "real" human beings in some fundamental way. But we can't forget that not so very long ago, the idea that people with certain types and degrees of disability didn't deserve the same basic rights as other humans was a mostly accepted and acceptable point of view. And it turned out to be a horribly short walk from abstract philosophical theorizing about genetic "contamination" and "humane" ways of "reliving suffering" to the Nazi T4 program, carried out mainly by medical professionals in what was at the time one of the Western World's most highly educated and "cultured" countries.

It's quite possible that nurse has problems and crises in her life that led to her outburst. But the nature of her outburst was pretty specific, and came from a familiar pool of ideology. The horror isn't that she said those words on a particular day to a particular person, it's that the ideas behind those words still have currency for who knows how many people.

It Can Be This Bad

One of the people I "follow" on Tumblr just reblogged this story, and I reblogged it myself. Now I'm including it here because it needs to be everywhere. For clarity, I'm going to actually quote the whole thing below, then add my comments. Original post by Feminist Rocker, reblogged by Andrea Shettle's Tumblr.

(One of my best friends on campus has cerebral palsy, and is confined to a wheelchair. Between the CP and a strong accent, she sometimes has trouble making herself clearly understood to strangers. She is having a strong allergic skin reaction to something; her aid has gone for the night, so I go with her to the hospital. The nurse is crouched down in the waiting room beside my friend’s chair.) 

Nurse:   “And how old is she?” 

My Friend:   “20.” 

(Instead of responding to my friend, the nurse looks at me.) 

Nurse:   “Is that correct?” 

Me:   “I would assume. She can speak for herself. I’m only here as a friend.” 

Nurse. “And for how long have you had these symptoms?” 

My Friend:   “I noticed them this morning, but they’ve gotten very bad.” 

(Again, the nurse looks at me instead of my friend; I say nothing. She continues doing this for several moments, asking questions and then looking at me, until my friend finally snaps.) 

My Friend:   “You talk to me, not her! She’s my friend; she doesn’t know anything about my medical stuff.” 

(The nurse stands up and storms away. I follow, more than a little angry on my friend’s behalf.) 

Nurse:   *to me* “You may think it’s nice to let her pretend to be a real person, but some of us are trying to run a hospital.” 

Me:   “Excuse me?! She’s in a wheelchair; she’s not stupid! She IS a real person.” 

Nurse:   “Well if you want to pretend that’s true, that’s on you.” 

(I am struck completely silent in rage and shock. A doctor, who I haven’t seen until he SLAMS paperwork down on the desk, interjects.) 

Doctor:   “Nurse. Supervisor. Now.” 

(The three of them go back into an office where the nurse comes out in tears; she was suspended for her behavior.)

Stories like this need to be circulated. They need to be read by people who claim that ableism isn't such a big deal, that it's "annoying but benevolent", that it's "harmless". People need to read these stories, including people with disabilities who have been lucky enough in life to experience only minor insults and bureaucratic hiccups. People like me, most of my life.

Shit like this happens. People like this do exist. I still believe that people this poisonous about disabled people are few and far between, but they make up for their low numbers by doing massive damage wherever they go.

And to me, the most galling thing is that people like this nurse probably do believe they are being brave and bold to stick up for their twisted concept of reality. That nurse may have been crying when she left, but I bet by bedtime she was telling herself she was another martyr of "political correctness" or somesuch. Sensitivity training can't help someone like this.

Photo Of The Day

From the bunnika's blog Tumblr.

An Experiment ...

I'm not completely sure what I expect to find out, but I'm going to try an experiment.

I will copy and paste into a text document, the full text of every news story my Google News page gives me on the keywords "disability" and "disabled". I'll do this every day for two weeks. At the end of the two weeks, I'll paste the entire accumulated text into Wordle.net, which produces color and size-scaled word clouds. Basically this should produce a graphical representation of what words come up most frequently in disability-related news stories.

After reading about and discussing as fact what we assume to be language habits and cliches about disability, I want to see what words actually come up most.

Photo Of The Day

From the Just Rollin On Tumblr blog.

Autism, Advocacy, and the Choices of "Parenthood"

I've been watching the NBC series "Parenthood" over the last few days. I wasn't even aware of it when it premiered in 2010, and it has sat in my Neflix queue for about a year. What finally prompted me to watch it was hearing that one of the main characters was a kid with Asberger's, though that's all I heard … I've neither heard nor read anything about whether it's a good, accurate, or helpful portrayal of someone on the autism spectrum. I finally caught the season premier a couple of weeks ago, and one of the first scenes I saw was with that character, Max Braverman (played by Max Burkholder). I was impressed enough to go back and finally watch the whole series from the beginning. It's a great show and I'll probably write more about it later this week.

One of the first season episodes featured the huge Braverman family participating in a fundraising walk for Autism Speaks. This to me was all at once not surprising, surprising, and disappointing. It was not surprising because I think that if you asked the average person to name an autism organization they'd name Autism Speaks, maybe especially if the people you are asking are entertainment industry professionals out to "do some good" … people that Autism Speaks has carefully and successfully cultivated.

It was disappointing because while the show, I think, treats autism / Asberger's with sensitivity and sophistication, those qualities aren't Autism Speaks' long suit. I don't claim to be an expert, but both my gut instinct and a fair amount of reading and inquiring lead me to view Autism Speaks as one of those most vexing of advocacy organizations … one which in the most general sense has good intentions, but whose unexamined prejudices and motivations lead them to arguably do more harm than good. Basically, Autism Speaks adamantly views autism as a "disease", it's primary goal is to cure it and / or prevent it

What could be wrong with that?

First let me say that I don't entirely buy the polar opposite argument, which is that autism is simply a matter of neurological difference, of diversity, and that "neurotypical" people view it as a disease because they refuse to understand it, and are angry because it annoys them and disrupts their lives. By this view, Autism Speaks is just one step shy of being a genocidal organization, and at best a group which claims to be "for" autistic people, which is really mainly interested in milking the frustrations and anguish of parents who can't believe the injustice of having a problematic child. As I say, I don't fully buy this, because I suspect that autism can be quite painful for people who have it as well, and not just because of other peoples' prejudices. But, in case you couldn't tell by my writing, I think this "pro autistics" view has some merit. At the very least, I think that Autism Speaks displays a rather shocking lack of self-reflection. It still hasn't corrected one of the most simple criticisms aimed at it ... that it doesn't have a single person on its Board of Directors or senior staff who has any form of autism.

Anyway, what would I have preferred to see "Parenthood" do rather than make a direct, after-show pitch for Autism Speaks? How about paring it with a pitch for the Autistic Self Advocacy Network, an organization with a different type of mission, founded by and for people who actually have autism spectrum conditions? So far, "Parenthood" appears to be at least acknowledging that autism isn't just a tragedy that happens to families, and that people with autism are full human beings, not noisy, out of control little machines that need to be fixed. Yet, they made the rather lazy, obvious choice not only to show the family promoting Autism Speaks … that would be believable given the organizations ubiquity … but encouraging support for it out of the show itself in real life so to speak, and equating support of Autism Speaks as support for people with autism.

I don't have it all figured out, but it would help to at least acknowledge that there's a difference of opinion on the subject.

Photo Of The Day

From the rolling through life Tumblr blog.

Disability News

I set my Google News page to find disability-related stories using keywords, "disabled" and "disability", and I pick a few that interest me ...

National Epidemic of Horrible People Pretending to Be Disabled

Brad Tuttle, Time Magazine - October 12, 2013

This article seems like a first draft of a better editorial, on a topic that may or may not be all that important. Tuttle loosely ties together two fairly recent disability "issues" … people pretending their pets are assistance or therapy animals so they can take them anywhere, and the Disney World line-jumping scandal … and one notably more perennial problem … abuse of handicapped parking permits. My overall reaction is to think, "Yup, that's cheating right there", but it just doesn't make me very angry. The consequences and effects on people with disabilities aren't really spelled out or dramatized. Obviously, these things do hurt people with disabilities, but not nearly as much as employment discrimination, lack of accessibility, or … for many … being stuck in a nursing home or other institution just so they can get help to get out of bed, wash, and go to the toilet. I'm also surprised he didn't fold in the hue and cry over people supposedly scamming Social Security Disability. I think that's a similarly overblown problem, but it does fit the apparent theme … how "ethically challenged" people are these days. Finally, it would have been helpful if the article at least tried to understand how people think about these kinds of cheating. What do they tell themselves in their minds that makes it okay?

Disabled principal stuffed away in school’s basement

Laura Italiano, New York Post - October 14, 2013

Like a lot of disability-related news stories, this article does a great job of dramatizing the issue it's focused on, but leaves a fairly obvious followup question unasked. If the Principal can't navigate her whole school because she now uses a wheelchair and they haven't installed a lift, what did they do with any kids they must have had now and then who used wheelchairs or crutches? They even noted that the Principal's original office was, "at the top of the stairs", and that kids loved to drop in visit with her. Well, disabled kids can't have done, can they?

The thing is, the answer to these questions might possibly be worse than most readers would guess. Knowing a little about how educational decisions are made in New York State, my guess is that grade-school-age kids in that district who use wheelchairs or crutches are sent to a regional BOCES … a separate facility for vocational and "special education" classes. I hope not. I hope that at least some of them have classes moved to accessible floors, or that the school tries some other ways to accommodate them, but if they won't help the Principal get to her office, I'm doubtful that they'd be all that creative with "a few" disabled students.

Letters on "Disability, USA"

"60 Minutes", CBS - October 13, 2013

A few letters in response to last week's "60 Minutes" story on suspicions of widespread cheating and corruption in Social Security Disability. It's good to see that the story is getting at least some well-deserved flack from viewers.

Moving

Disability Thinking is moving. I am working on setting up a Squarespace website where this blog will reside, alongside a bunch of other disability-related content. Blogging here will be light for the next few days, while I make the new place presentable.

Once I do move, I'll announce it of course and put up a link to the new site. Also, I'll leave up this Blogger blog indefinitely. All of my old posts will make it over to the new site, but I think I might be losing my subject tags.

Stay tuned for updates.

Photo Of The Day

From the Soupladle Tumblr blog.

Disability On TV Update

This week "The Michael J. Fox Show" got a little worse, while "Ironside" got a little better. The two haven't quite switched places yet. The M.J. Fox Show is still a better sit-com than Ironside is a drama. But they are close to meeting in the middle. Sadly, neither show is doing well at the moment, and two of my favorite TV critics are listing both among the "walking dead" of the new fall season.

Some specifics ...

The Michael J. Fox Show - Episode 4 "Hobbies"

• The words "flop sweat" showed up a lot in early reviews of this show. At first I thought that was overstating things, but now I'm not so sure. The show feels even more rushed, desperate to make us laugh, than it was when it started a few weeks ago.

• For a show that carefully spells out its lesson for the day at the end of each episode, its lessons are awfully mixed up. Is Twitter a fun medium for snarky aspiring writers, or an appalling weapon of digital bullying? Is Mike basically wrong and paranoid about his newsroom rival, or is she the real sociopath?

• The only reference to Mike's Parkinson's Disease was when he said he was more coordinated on the ice. Actually, I'm not sure that was a Parkinson's reference. If it was supposed to be, they should have connected the dots a bit more … maybe note how it's like stutterers who don't stutter when they sing. Sometimes, you really do have to explain the joke.

• Best moment: The hockey dads have ended up playing each other while the kids watch, bored and literally sidelined. When Mike's wife Annie shows up at the rink, one of the fathers calls out, "Wife!" exactly like Wayne and Garth shouting "Car!" while playing street hockey in the "Wayne's World" movie. It was funny, yet they even let that one drop, because the other players didn't react. They should've stopped skating and gaped at her or something.

Ironside - Episode 2 "Sleeping Dogs"

• This episode was not bad. I actually got into it. They set up a couple of intertwining mysteries that keep my interest. I really wanted to find out what they were all really about. Also, the dialog and one-liners were a little better, funnier, more natural. Everyone seemed more relaxed.

• A few disturbing patterns established in the Pilot seem set to continue. For one thing, if they're going to have Ironside sleep with every sexy woman he flirts with, in every episode, it's going to get stupid and offensive, fast. Also, kind of like the "Fox" show, "Ironside" seems to be shooting for sophisticated moral ambiguity, but missing it and hitting confusion instead. It seems like we're supposed to understand the lesson Ironside learns about child abuse when observing what happened to his former partner's nephew, but I really didn't get what the lesson was supposed to be. Which would be fine, except that it didn't seem to be inviting me to ponder the lesson. We were supposed to understand it, and it wasn't understandable the way they depicted it.

• Given my squeamishness at the Pilot's celebration of police brutality, I did like the little nod in this episode to the idea of cops not shooting people as soon as they appear threatening. The cop physically disarms the suspect instead, then holsters his gun, saying, "Yup, this thing is definitely not working."

• As I hoped, we may be starting to learn about each of Ironside's team, and why he chose them. Presumably, each of these first few episodes will focus on one of them. But the face in the spaghetti moment was odd and weak, especially as a capper to the whole episode.

• As of right now, the new "Ironside" is about at a level of quality that would have made it a solid, not spectacular hit in the early '70s … the equivalent today would be one of the CSI or Law & Order spinoffs. For many reasons that's just not good enough anymore. For starters, the schedule already has enough mid-level police procedurals. However, the thought did trigger another. If "Ironside" doesn't work out, why not add the Ironside character to one of the more established procedurals? Or, have him make an occasional guest appearance? They seem to operate in roughly the same universe … just a slight fictional step back from our real world.

• Maybe I'm grasping as straws, but I just wonder whether a detective in a wheelchair is enough of thing today to base a whole show on. That would be progress, I suppose. If so, it might still be enough for an guest star collaboration with Ice-T and Mariska Hargitay.

• Best moment: "If you're going to stare, at least get the hell out of my way, alright?" -- Sgt. Ironside. Now that is a genuine disability line.

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Ironside - Wednesdays, 10:00 PM Eastern, NBC.

The Michael J. Fox Show - Thursdays, 9:30 PM Eastern, NBC.

Photos Of The Day

From a collection of Frida Kahlo's possessions, posted by Madam Meow / Holly Gaboriault, via Sunshine, Been Keeping Me Up For Days.