Monday, September 15, 2014

#JusticeForIssy

Illustration of stacked newspapers
Shannon Des Roc, BlogHer - September 11, 2014

Disability Visibility Project - September 15, 2014

Some more thoughts on sympathy for parents who murder disabled children:

- In general, I support discussing how systemic failures and economic injustice can partially explain some individual violent crimes, including murders and suicides. But it seems like the only widely accepted context for such discussions is with the murder of disabled children. Similar discussions involving other kinds of people and situations … such as gang violence and school shootings … are generally despised as excusing and coddling criminals. Somehow, though, killing disabled people is in some way "understandable". How can that be anything but galling and scary for people who have disabilities?

- We absolutely should talk more about the unacceptable delays and gaps in support services to parents of kids with disabilities ... but never in connection with the murder of disabled children. We cannot afford to undermine the idea that disabled children … even the most difficult and baffling … are sentient human beings.

- We shouldn't assume that parents who go off the deep end are always ill-served. Some fumble or even reject opportunities for support, out of confusion, exhaustion, or failure to recognize promising pathways when they appear. Some parents also find it hard to engage support because they feel it's a weakness to ask for help, or because they are terrified of being judged or losing parental authority. All of these can be legitimate concerns, but are never enough to justify, or even properly explain, murder.

- When we do discuss systemic failures, we also need to discuss the influence of well-funded, popular, but unhelpful, wrong, and destructive ideas about disability and child rearing that are regularly fed to parents who often don't even know there are other points of view. With autism, especially, parents urgently need to be told that no matter how mystifying their behavior and communication might be, autistic children are first and foremost people, not wild animals or tortured, miserable monsters.

- One reason why a note of sympathy keeps coming up in cases where parents murder their disabled children is that by and large, people find it easier to identify with frustrated parents at the end of their rope, than with children who have what seem like mysterious, frightening disabilities.

- To repeat … discussing the lack of support for parents is fine and necessary, but NOT IN CONNECTION WITH ACTUAL MURDER OR ATTEMPTED MURDER OF DISABLED CHILDREN OR ADULTS. It should be a taboo, indecent, simply not done.

Historical Reminder

“Each refused to surrender to physical limitations that might have destroyed them.”
— Narration about Theodore and Franklin Roosevelt, in Ken Burns’ documentary, “The Roosevelts: An Intimate History”
When we question the idea of “overcoming” disabilities today, we should occasionally remember that not so long ago, many if not most disabilities really did threaten to “destroy” people, either directly or indirectly. Many disabilities still do, today, but the line between illness and disability then was far more blurry then as it is now.

Sunday, September 14, 2014

"Red Band Society" Followup

Picture of an old style TV set with the wheelchair symbol on the screen
Lillie Lainoff - Washington Post - September 12, 2014

I saw this article only minutes after posting my piece yesterday on upcoming new TV shows with disabilities themes, in which I expressed some cautious optimism about "Red Band Society”. After reading the article, I’m a bit less optimistic, but I will still be looking for positives I think may be there.

One problem may be the rather hard to define but in some ways crucial difference between chronic or terminal illness … like cancer or cystic fibrosis, and disabilities … like being an amputee or a paraplegic. As I mentioned yesterday, the line is blurry. However roughly speaking, one group copes more often with active pain, illness, and unpredictability. The other group has to focus more on adaptation and social integration. One group may or may not survive. The other probably will, for the long haul, while their disabilities will always be with them. It looks like this show will mainly be about illness, not disability. My interest is partly in seeing how the two kinds of situations can be both different and similar.

I agree with Ms. Lainoff that another big problem is how the hospital will be portrayed. I think they might get away with giving us such a happy, nurturing hospital with so much freedom granted to the patients, if the show made clear that it is some kind of special, innovative institution designed specifically for seriously ill teens. Maybe they talk about that in the Pilot, but Ms. Lainoff didn’t mention it, so I’m doubtful. It’s okay to show an atypical, idealized setting, as long as there is some explanation for that. Otherwise, it’s just rose-colored glasses.

As for how Red Band Society’s characters represent chronic illness or disability, again it makes a difference which thing they want to represent. A cheerful representation of chronic illness will seem more fraudulent than if they really mean to portray disability. Maybe the writers and show runners are confused. Non-disabled people who create movies and TV shows are very easily confused about the ideas and ideals they think they are presenting.

Weekly Wrap-Up

Disability Thinking Weekly Wrap Up in white letters superimposed over sepia-tone photo of handicapped parking spaces
Tips, Freak Shows, and Friday Night Lights.

Sunday, September 7, 2014
Monday, September 8, 2014
Tuesday, September 9, 2014
Wednesday, September 10, 2014
Thursday, September 11, 2014
Friday, September 12, 2014
Saturday, September 13

Saturday, September 13, 2014

Fall TV Alerts

Picture of an old style TV set with the disability symbol on the screen
Two TV shows premiere this week that in different ways deal with the disability experience: Red Band Society, and the new Ken Burns documentary, The Roosevelts: An Intimate History.

I am absolutely locked in for the "The Roosevelts." As a former history major, a political junkie, and a disabled person, it’s a trifecta. Both Theodore and Franklin Roosevelt are iconic historical figures and political pioneers … not to mention Eleanor’s leadership on so many issues. Franklin, of course, spent most of his adult life and all of his Presidency dealing every single day with the paralysis that resulted from Polio. But from what I can recall in my somewhat less intensive reading about Teddy Roosevelt, it seems like he, also, dealt in a way with what today we would call disabilities. He was certainly a “sickly” child. And although I don’t believe his conditions continued into adulthood, most historians believe that his early experience of “weakness” and “frailty” profoundly affected Theodore's personal philosophy, and maybe even his political outlook.

I wonder if Burns will make that connection. In fact, I am a little nervous to see how he handles FDR’s polio, too. I hope he doesn’t confine it to one episode and then leave it behind once Franklin resumes politics. I also hope Burns calls upon more recent historical accounts that undercut the idea that FDR kept his paralysis a total secret. He might even include a few interviews with James Tobin, author of a very recent book on the subject I reviewed back in January.

Here are two relevant scenes from Burns’ film, available on the PBS website:



These key parts of the series seem to be set for Wednesday evening. Unfortunately, so is the premiere of "Red Band Society" on FOX.

I will be reviewing each episode of this new show for the TV website Gotta Watch It!, but I’m going to wait until winter, probably, before doing an extensive discussion of it on my Disability.TV Podcast.

If the show itself is any good, it looks like it will explore many different aspects of the disability experience … institutionalization, the strengths and flaws of the medical model, camaraderie among people with diverse disabilities, disabled people struggling for freedom and agency, and the murky boundaries between disability and life-threatening disease. Of course, if the acting, writing, or filming are sloppy or lazy, then it won’t be worth watching regardless of any positive messages it might try to send. Plus, dealing with these interesting disability issues doesn’t mean the show will deal with them well. I’m a little concerned that they’ll try too hard to portray the hospital as “fun” all the time. On the other hand, I love the idea of these kids bonding, helping each other out, and trying to wriggle out of the medical model control they are under.


I am looking forward to finding out if it all works.

Friday, September 12, 2014

Schedules

illustration of weekly schedule with color coded items
It Keeps Going - August 20, 2014

(Via the Wheelie Wifee Tumblr blog)

This blogger goes on my favorite disability blogger list because she focuses on practical ways to combat depression, aimlessness, and inactivity … risks I think disabled people face more than most. This is especially true for those of us who do not have jobs. There are usually good reasons why we don't, but whether or not you are even in the market for a job, it can get really depressing when it seems like you have nothing to do every day.

I would like to note three more benefits for disabled people of making and using a schedule, beyond the benefits discussed in the article:

1. It keeps you ready for the rhythms of employment, in case the right opportunity comes along to get back to the workplace.

2. It provides you with coherent answers to job interview questions about what you’ve been doing while unemployed.

3. If you need to apply for disability-related benefits, a detailed daily schedule can help document the extent and limits of your activities.

For my schedule, I use Apple Calendar and Todo, applications that work on my Macintosh computer and iPhone.

Disability.TV Podcast - Friday Night Lights

Disability.TV logo next to Friday Night Lights tv show poster
On this episode of Disability.TV, Maddy Ruvolo and I discuss the critically acclaimed series about the high school football town of Dillon Texas, and one of the longest running and nuanced disabled characters on TV, Jason Street. You can find Maddy on Twitter @maddyruvolo, and at the Disabled Girls Talk Podcast, which she hosts along with Emily Ladau.



Upcoming Podcasts

September 19
Game Of Thrones - Part 1
Guest Co-Host Alice Wong

September 26
Mini-Cast

October 3
Game Of Thrones - Part 2
Guest Co-Host Alice Wong

October 10
Mini-Cast

October 17
Guest Co-Host Cheryl Green

October 31
Guest Co-Host Kamilah Proctor

Click one of the links to subscribe to the podcast at iTunes or Stitcher.

Thursday, September 11, 2014

Pistorius Verdict - Part 1

BBC - September 11, 2014

The BBC quotes from the judge’s initial decision, that Oscar Pistorious is not guilty of premeditated murder, but that she will pass a sentence on him tomorrow for “culpable homicide”:
"The accused had reasonable time to reflect, to think and conduct himself reasonably.
"The accused knew that there was a person behind the door, he chose to use a firearm which was a lethal weapon, was competent in the use of firearms as he had received training," she said.
The judge also took time to reject the defence arguments that Mr Pistorius is more likely to confront danger because of his disability - both his legs have been amputated.
"Vulnerability is not unique - There are many people in this country without any form of security at all," she said. [Emphasis mine]
Whatever else comes out of this case in the end, this rather oddly worded statement nevertheless addresses the disability issue pretty effectively. Disability can certainly be a vulnerability when it comes to the threat of physical violence. However, it would be too much to give everyone with a verifiable vulnerability extra leeway to shoot people. Each case should be judged on its individual merits, and there are many situations where disabilities aren’t vulnerabilities at all.

That, coupled with the fact that the judge says Pistorius did not act reasonably, actually says quite a lot.

Wednesday, September 10, 2014

4 More Tips For Parents

Mary Evelyn, What Do You Do Dear? - September 5, 2014

This is a terrific article with great advice for parents of disabled kids, and kids with disabilities themselves. Slack-jawed stares and uncomfortable questions are often the first and most frequent encounter disabled people have with the social stigma of disability. So, I would like to add four more suggestions for parents on how to help their children handle disability-related pointing, staring, and asking.

1. Age makes a difference ... the age of your child, and of the person doing the pointing, staring, or asking. If you child is older than the person asking the questions … if your child is a teen and the other kid is 5 years old … it's a good opportunity to help your disabled child take on age-appropriate responsibilities. Teach them that as the older child, they should be a little kinder and more forgiving to the younger child than they might want to be. Help them recognize situations where they can help make someone more comfortable with and respectful about disability.

2. Help your child recognize situations where frank disability questions are okay. For example: doctor’s appointments, certain educational settings (though not necessarily all of them), and dealing with police, firefighters, and EMTs.

3. Empower your child to establish appropriate personal boundaries. Teach them effective, constructive ways to respond when people cross those boundaries. Let your disabled child know they have a right to be treated respectfully, and that they don't have to put up with everything from everybody, even from adults, just because they have disabilities and need help and supports that most other people don’t. It’s good to be appropriately grateful. It’s dangerous to feel beholden.

4. Help your disabled child develop effective and efficient ways to explain their disabilities to others. Having a brief, straightforward answer to the most “frequently asked questions” can be practically helpful, and give one added confidence.

Tuesday, September 9, 2014

AHS: Freak Show Trailer


Another trailer for American Horror Story: Freak Show.

A few thoughts on this particular brand of “problematic” disability depiction:

I have seen depictions of disability on TV that disturbed me, but didn’t piss me off. I generally don’t mind disability depictions that are upsetting. It’s disability depictions that feel wrong and harmful that bother me.

On paper it is a simple matter to distinguish between what’s in the actual “text” and what is “meta”. For instance, if a AHS “Freak Show” includes scenes where audiences gasp and swoon on viewing physically deformed people on display, the text itself is offensive, but the show may or may not be criticizing the behavior of the freakshow audiences, portraying them as ignorant or nasty. It's possible to have a progressive depiction of regressive behavior. But what if we, the audience at home, not only tut-tut about those old-timey rubes and their insensitive attitudes, while at the same time we also kind of join in their morbid curiosity about lookin’ at freaks? The lines blur, and writers can get away with a lot by insisting that they are just commenting on things as they are, or were.

I hope freak shows don’t become the next hipster affectation or Steampunk theme. People should know about the times, not so very long ago, when people both cynically and sincerely believed that gaping at deformed people was enlightening, like participating in science, appreciating the wonders of nature. But I don’t want people to start thinking it’s okay again, even nostalgically.

Monday, September 8, 2014

What's To Be Done?

CBS Philadelphia - September 7, 2014

I never know how to approach these kinds of incidents.

I am usually a “systems" kind of person. I’m generally more interested in the beliefs, practices, and social structures that lead to stuff like this than I am in the moral depravity of the perpetrators. However, sometimes it’s hard to avoid the conclusion that they’re just evil … or that they have momentarily given in to evil, whatever that might mean. Or, maybe this is one of those unspeakably sad instances where one group of people used to being abused and reviled by a hostile society gets a momentary jolt of rough power out of abusing and reviling another person who is powerless in society for other reasons.

Also, I can’t help thinking that neither the man’s physical and emotional pain, nor the kids' disgusting glee at beating him, is the worst thing about this. The worst thing may be how it reinforces the belief by some people … especially families of disabled people … that inclusion and community integration are dangerous, idealistic dreams, and that the best thing for intellectually disabled people is to be sheltered, protected, and supervised at all times.

It gets harder to argue “the dignity of risk” when this kind of thing continues to happen. Sheltering isn’t the answer, but the path to greater freedom and inclusion is not smooth.

Meanwhile, what's to be done with the teens who did this? What's to be done with anyone who does anything like this to an intellectually disabled person? In situations like this, finding the right balance between punishment and education is much harder than usual. I want desperately to do both to the full.