More About Ethan Saylor

Disabled Americans and the Law

Diane Dimond, Huffington Post - September 12, 2013

I'm not fond of some of the writer's phrasing … a little too much of that "special" tone … but the article does give a very good overview of the Ethan Saylor case. I think Dimond has the scenario pretty close to correct. Ethan's death wasn't intentional, but it was negligent, due, probably, to poor training, ignorance, and maybe above all stubbornness.

I really appreciated reading a bit more than elsewhere about Ethan's "18 year old aide", who could have short-circuited the situation and tried, but wasn't listened to. I think that deserves some looking into as well. What other layers of prejudice were involved? Did the moonlighting police officers disregard the aide because she was female and young? Was she conventionally pretty? Or, was she the kind of young woman that asshole guys don't even notice are there, much less pay any attention to? I feel terrible for Ethan and his family, but I think at the moment I'm more heartbroken for that aide. I hope she's some kind of ok now. Scratch that. I hope that somehow her effort to help was recognized, and that she gets to keep working in the disability field, if she wants to.

I've given presentations on disability awareness to several classes of police cadets in my area, and we always spend a good portion of our time talking about the fact that people with disabilities may respond differently than expected to officer commands. I tell them that I'm not qualified to train them on the specifics of physical restraint for each of the scores of disability types, but that the key anyway is to keep an open mind and always be aware of the possibility that disability might be a factor. If I get another chance to do a police academy class, I'll definitely bring up Ethan Saylor, and his aide.

Catching Up with AmputeeOT

Christina, the AmputeeOT, continues to put out YouTube videos about how she and others function day to day with amputations and prosthetics. She hasn't produced anything quite as cool as her Lego Leg video, with the possible exception of the video about her getting a tattoo on her opposite leg. Still, she's definitely hit on a nice blend of entertaining and informative that makes it worth checking her channel every Wednesday for a new video.

Here are the last three ...

Random Thoughts on Getting Mad

I added some comments yesterday to a Tumblr post by Crazy Crip Girl, who wrote about the frustration of friends who say that she's too angry and confrontational when faced with inaccessible facilities and insensitive behavior. The discussion interested me because:

1. As a person with a disability, I know both firsthand and through others with disabilities that a lot of anger at inaccessible businesses, ham-fisted bureaucracies, and insensitive people is fully justified. Suppressing it all the time just to "get along" isn't healthy. Plus, processing and expressing justified anger is often the indispensable first step towards needed change.

But ...

2. I, personally, really dislike confrontation and anger in other people. Intellectually, I don't think it's very effective, at least on a personal level, and emotionally, it makes me want to hide.

I struggle all the time to reconcile these feelings.

So, here are some semi-random thoughts about the meaning of anger for people with disabilities, and how non-disabled people react to it. (Warning: generalizations ahead):

Non-disabled people tend to exaggerate situations after the fact in a way that casts us as the bad guy. Our anger seems much more hasty and irrational to them in their memory than it was at the time.

Maybe people would prefer us to be sad than angry. If we're sad at being kicked out or excluded, they feel bad for a little while, then forget about it. If we get angry, it ruins their whole day. Anyway, sadness allows them to feel pity for us, which is a sort of pleasurable feeling to have, while anger just makes them feel threatened and defensive.

When things aren't going right ... poor accessibility, botched accommodations ... I try not to get angry at low-level, low-paid workers, who are usually the ones I am dealing with directly. I try, but don't always succeed. If the situation is deteriorating, I try to save my anger for management.

Sometimes when non disabled people get mad at us for getting mad, it's their emotional reaction to a combination of powerlessness (they can't fix the situation), and embarrassment (Oh God, don't call attention to yourself!) They're getting a taste of what it's like to be us, they don't like it, and they get mad at us for it. Or, maybe they mistakenly think we're mad at them.

I think some non-disabled people really do think, deep down, that we aren't very smart or rational. They really do think that maybe we haven't thought of being polite, haven't researched our own problems backwards and forwards, and that their rather pedestrian brainstorms will be shatteringly new to us and somehow change our lives. Not that we all practice it, but I think most people who have had disabilities for longer than a year or two are familiar with the wisdom of education, civility, an negotiation with businesses and facilities that aren't accessible … or with people who are discriminatory. Really, it's not a new idea to us.

A lot of non-disabled people see inaccessible facilities and insensitive people as merely inconveniences, and don't understand how significant they can be for us both practically and emotionally.

I think that some of us who have disabilities really do need to work on being calmer and more strategic in how we advocate for ourselves. By the same token, many of us really need to get angry more often, throw caution to the wind, and stop being doormats. 

On the other hand, there are lots of non-disabled people who are awesome and just instinctively share our anger, support us, stick up for us, and maybe get a bit angry themselves. Or, even when they disagree with our approach, they give us the benefit of the doubt.

Best Nursing Homes vs. Home Care Statement Ever

Guest essay: Curtail the use of nursing homes

Chris Hildebrant, Rochester Democrat and Chronicle - September 7, 2013

Chris Hildebrant's essay here is the best explanation of the nursing homes vs. home care issue I've ever seen.

Numerically, this issue probably affects a fairly small number of the total population of "people with disabilities". It really only directly impacts people who can't physically function day to day without help from another person, people who can make great use of in-home personal care, but too often wind up in nursing homes, simply for want of a properly designed and adequately funded alternative. What makes the issue so important is how much stagnation and suffering it causes to put people with disabilities in nursing homes, and how unnecessary and wasteful it is.

This should be a much bigger deal for everyone with a disability, including those of us who aren't (yet) at risk of being placed in a nursing home.

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.

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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.