Flavors Of Ableism

The "enemy" of people with disabilities isn't hostility so much as disbelief. People don't believe we have disabilities, don't believe we have the disabilities we say we have, don't believe we know what kind of job we should go for, or don't believe we properly understand our own disabilities. There's this sense that, underneath what we say and present on the surface about ourselves, sits a snake's nest of unspoken "truths" that we are deliberately hiding or have hidden from ourselves. Apparently, we float through life, (or crash recklessly through life), in a bubble of unreality that non-disabled people are obligated to pop for our own good.

Another big enemy is complacency. Non-disabled people don't think of themselves as anti-disabled. On the contrary, they tend to think that they have nothing but good will for people with disabilities. When they feel hostile to an individual with a disability, they deal with the contradiction by deciding that in some way that person isn't "really" disabled.

That Guinness Commercial ... Discuss

Other work has drawn me away from blogging the last few days, and I probably won't be back to it until the weekend. In the meantime, watch this Guinness commercial. I've seen both positive and negative reactions to it. I think it's a good entry point for discussing the different layers and levels of "ableism" and "disability awareness".

TV Shows

To elaborate on what I have in mind for this podcast idea, I would start off with episode recaps and discussion of two shows set to debut this Fall:

Ironside (New Edition, premiers October 2, 2013 … Remake of the late '60s, early '70s cop show about a brilliant investigator who uses a wheelchair, and his support team. In addition to figuring out whether the new show is any good, the obvious thing to do will be to compare and contrast the remake with the original starring Raymond Burr. Will the new show try to break new ground on disability issues? Will it strive for greater realism, or just more fireworks?

The Michael J. Fox Show (premiers September 26, 2013 … The actor will play a popular New York City news anchor who has Parkinson's Disease, and decides to try going back to work. Fox has Parkinson's Disease himself. How much of the comedy and momentum will depend on the character's disabilities? Will viewers be able to process a steady diet of disability-based comedy?

And then there are currently airing and past TV shows to discuss, such as:

Game Of Thrones … Two major characters, Tyrion Lannister and Bran Stark, and one minor character, Hodor, make this possibly the most disability-centered show on television, maybe in television history. Yet, disability isn't even close to being the show's main theme. Are these characters just fun, or are they saying something about disability?

House, M.D. … Dr. Gregory House's chronic leg pain and related drug dependency are recurring themes. Does the show suggest that House's chronic pain is responsible for his constantly mean, antisocial behavior? What are we supposed to think about the relationship between his pain and supposed drug addiction?

Life Goes On … The Sherwood family's son has Down Syndrome, as does the actor who plays him on the show. Is this show just too dated to be relevant? Did it succeed in making a disabled character an important, but not dominating part of a show about a full family? Why did the writers have to name the character Corky?

The West Wing … The President's Multiple Sclerosis has recurring political and physical effects. There is also an occasional Deaf character, a political consultant named Joey Lucas, played by Deaf actress Marlee Matlin. My recollection is that they the show handled the disability plots as well as all the others, but in retrospect, are these disability portrayals truly interesting in their own right?

The Big Bang Theory … Is the character Sheldon Cooper supposed to have Asberger's Syndrome? Is it an intentional portrayal? Is it becoming one?

Glee … This show has at least one regular character with a disability, Artie, who is paraplegic and uses a wheelchair, and a recurring character, Becky Jackson who is a student with Down Syndrome and protégé to the cheerleading coach. How do disability portrayals turn out in a show that's all about slapstick, surrealism, and sentimentality?

And then there are the movies ...

Don't forget to vote on whether or not you like this idea, in the poll over to the right.

Pardon Me, But Fuck!

The preceding swear is not for dramatic effect, nor is it link-bait. I really mean it. As soon as I write something I think is clever on this blog, I go and read Smart Ass Cripple, and my illusions are shattered. But, I do it anyway because he's just so great.

Everything In Moderation

I can't know what it's like to be a non-disabled person, but I'll bet one of the most confusing aspects of disability awareness for non-disabled people is our dislike of being admired.

For one thing, what's wrong with a person who gets angry at being praised? For another, as soon as we get done saying for the umpteenth time that we're not "inspirational", we start complaining about the cruelty and thoughtlessness of strangers. So, what is it, then? Are people supposed to mean to us or nice?

The answer is ridiculously simple … moderation.

Be nice, but not too nice, or for no reason.

Meanness is never okay, but if you're in a bad mood, don't sprain something trying to be nice. Just remember that there's a thin line between disapproval and cruelty. And don't use our disability as a special focus for your anger or resentment issues.

Pretty simple, I'd say.

P.S.: Also, stop saying "retard", to anyone, in any situation. And we get to say "cripple" if we want, you don't.

Again, not too difficult.

Question For Disability Nerds ...

Earlier this summer I posted some thoughts about starting a podcast about disability in movies and television. I haven't gotten very far yet with that idea, except that my list of potential topics has grown exponentially. I keep thinking about films and shows I'd forgotten, and finding out about ones I've never seen.

The idea still seems sound, and as far as I know there's no consistent, ongoing content looking at disability in popular culture from both a disability-aware standpoint and … this would be the key for me … from a TV and movie-friendly perspective. In other words, I'm not interested in a highly politicized or harshly judgmental treatment of the subject. I don't mind criticizing bad depictions, but I love TV and movies, so I don't assume their depictions of disability will all be bad. I also don't think "bad" is a simple concept here. It depends on the context, the intent, and the effect, all in equal parts. Plus entertainment value.

So, would you visit a website and / or listen to a podcast about how disability is depicted in movies and on TV shows? Vote in the poll in the right hand column.

On The Road

I'm in St. Louis for a class on grant writing. There are accessibility and accommodation stories to tell when I have time.

More About Home Care

Rick Perry loves the part of Obamacare Peggy Noonan hates

Ezra Klein, The Washington Post - August 22, 2013

Another followup on the Community First Choice component of the Affordable Care Act, from the "Wonkblog" …

"The program is so irresistible that even Texas Gov. Rick Perry is asking if his state can be part of it."

There's one aspect I'm still not clear about. From what I've read so far, Community First Choice will fund home care that is provided for pay by family members, but will require there to be a third-party involved who isn't a family member in order to guard against conflict of interest. That seems to be the case when the person with a disability is severely cognitively impaired and has a guardian. But what about the majority of home care users who make their own decisions? Will they have to have a third-party manager or watchdog if they want to hire their mother, father, sister, brother or spouse? Personally, I think it's a good idea, but I don't think it should be required. I've known people who are fine with everyday direction of their own care, but frankly could use some help and support to deal with really tricky personnel or administrative problems. I've also known plenty of home care users who are more than capable of running their own show, and dealing with whatever problems arise.

"Wonkblog" Kicks Ass

Peggy Noonan attacks Obamacare for doing what Peggy Noonan wants Obamacare to do

Ezra Klein, The Washington Post - August 20, 2013

This is an outstanding article that almost entirely clears up the apparent issue I wrote about a few days ago, about how Obamacare may or may not affect parents being paid to provide home care to their sons or daughters with disabilities. In short, the problem originally cited turns out not to be a problem at all, and it's possible that anxiety about the confusion was whipped up on purpose to discredit the Affordable Care Act itself.

Obamacare will extend good coverage of home care to many more people, in states where it is now absent or minimally offered. It will allow family to be paid care providers. At the same time it will require a non-family member to oversee design of the care plan, thereby at least partially solving the potential conflict of interest problem, as well as providing possible troubleshooting should family care take a sour turn.

I can't emphasize strongly enough that anyone interested in how the Affordable Care Act develops should read The Washington Post "Wonkblog" daily. They are providing in-depth, dispassionate, and very readable analysis of every aspect of the law, every step of the way. It's an essential resource.

==========

P.S.: If you want to know how some piece of health care policy will affect people with disabilities, check to see what ADAPT thinks. They know their stuff, and when it comes to partisan politics, they are entirely agnostic ... or to put it more crudely, they don't give two shits about Democrats or Republicans.

That Nasty Letter ...

As suggested by one of my Facebook friends, I'm not going to post a picture of the nasty letter from "one pissed off mother", aimed at parents of a child with autism who lives in her neighborhood. I will link to it, however, so you can read it if you want. Be warned: the letter isn't just insensitive, it is filled with hate and rage, and includes eliminationist language.

Ordinarily, I don't get into news stories and social media memes in which everyone piles tons of fairly obvious scorn upon specific individuals who are especially ignorant or depraved. I'm more of a systems advocacy kind of person, and hating on even very hateful individuals, I think, tends to divert energy away from dealing with institutional problems.

That said, I do think that this is an exceptional case. The letter clearly and specifically progresses from the writer's personal annoyance, directly to some very disturbing life and death ideologies. It's considered bad form to invoke Hitler in a debate, but in this case, the Nazi comparison is quite apt.

I'm not genuinely afraid that this signals some fundamental societal shift in that direction. But it does put the lie to a pretty common fallacy among some of us in the disability community, myself included … that ableism is mostly benign ignorance, and that people don't really "hate" us. "Pissed off mother's" letter is a useful reminder that not too far underneath our veneer of enlightened progressivism, there's still a lizard brain that is disgusted by and afraid of "others". And people who look funny, move funny, act funny, and sound funny are definitely "others."

Don't get me wrong, I'm grateful for the veneer, and I think lots of people don't react negatively at all to people with disabilities, even down in their lizard brains. But we'd be fools to think that a mere 50 or so years of relatively enlightened behavior and policy have entirely undone the impulses that led to forced sterilization, warehousing, freak shows, and the Nazi T4 program.

Midweek Musical Interlude

I'm listening to the new Superchunk album, "I Hate Music", so I figured it would be a good time to post their fantastic cover of The Cure's "In Between Days".

The Pros and Cons of Sexy Photos

This blog is pretty weak on photographs. That's partly because I'm a terrible photographer, and partly because I haven't completely figured out the legal and ethical issues involved in reposting interesting photos I see on other disability-related websites. Do I need permission to post them on my blog or website? Permission from whom? What if I provide a link back to the source, is that enough?

Still, just seeing the amazing photos other peoples' blogs and websites is part of what got me excited about disability art and expression again, after a long period of feeling stagnant about them.

For example, there's the Tumblr blog, Disabled People Are Sexy. It's worth a look.

What I like about these photos is that they call up lots of strong emotions in me … a wide variety of feelings, but none of them anything close to pity, revulsion, or depression.

Of course, sexy pictures of people with disabilities may simply objectify and marginalize in their own way, just as pictures of pitiful children in braces did back in the days of Polio, and toddlers with leukemia do today on Facebook. The difference, I think is that it seems at least like the people in the "Disabled People Are Sexy" photos want to be photographed, want to be seen. Being in these photo shoots seems to be liberating for them, not humiliating. Hard to say though. It's probably a good idea to keep an open mind in every way with these pictures.

To that end, I also recommend reading a reply by the blogger to a negative comment:

"To The Anon Who Had A Problem With Me Reblogging Posts".

How Do You Fire Your Family?

Federal officials reverse course on disability provision of Affordable Care Act

Yuxing Zheng, The Oregonian - August 16, 2013

I think people who use in-home long term care should be allowed to hire family to provide care if that's what they want. My only questions for those who do would be:

Could you fire your Mother, Father, Sister, Brother or Spouse if they were doing a crappy job?

and

How will you feel about living with your family, depending mainly on them for your day to day needs, when you are 25, 30, 40 years old?