Monday, September 30, 2013

Flynn's Moment

Old TV set with wheelchair icon on the screen
Why Flynn is the real hero of “Breaking Bad”
Anna Mae Duane, Salon.com, September 29, 2013

I read this Salon.com piece, which lays out an interesting case that Walter White, the mild-mannered teacher turned murderous meth kingpin in "Breaking Bad", lacked his son's understanding and acceptance of the body's imperfections, and I thought, "Um, okay. I guess." I thought the article was going to be all about Flynn's long … very, very long … delayed moment of empowerment, in the next to last episode of "Breaking Bad". It was certainly a moment I feel like I appreciated in a different way than probably most viewers.

Flynn was the "real hero" of "Breaking Bad" because after sixty-some episodes during which he was literally the last one to know about the crucial thing happening in his family, he took less than a minute after having it all laid bare to choose the right side and physically throw himself between his mother and his knife-wielding father. Sprawled awkwardly over her, his Canadian crutches every which way, but with his powerful eyes never leaving his attacker, Flynn got out his cell phone and, still facing the point of Dad's knife, called the cops.

A couple of times after that, in a less violent but no less powerful way, Flynn similarly cut to the chase with Walt. Flynn was arguably the one who delivered the final blow to Walt's house of cards, thoroughly rejecting his eleventeenth attempt to rationalize his way back into the family's favor, and asking, with rage and strength in his shaky CP voice, "Why are you still alive? Why won't you just die already? Just die!"

Those brief but pivotal scenes had to have been one hell of a payoff for actor R. J. Mitte, who spent pretty much the whole series being clueless, immature, and breakfast-obsessed, while his family went to hell. He had a few moments early on when we saw hints that Flynn might be the voice of reason … when his father Walt considered not treating his cancer, and when Uncle Hank was all pissy about being crippled from his gunshot wounds. But those moments came and went pretty quickly. The rest of the time it was all about what a "bitch" his Mom was being to his poor, misunderstood Dad, which awesome car Walt would buy him, and whether to have eggs or pancakes. He seemed, for much of the series, like a wasted character … a wasted disabled character to boot, played by a disabled actor.

But Vince Gilligan and Mitte made up for it all in the end. I'm biased, of course, and I tend to see disability themes where the probably weren't intended. I don't buy into the author's intent theory though. I didn't have to think and dig and parse and interpret to see a very personal empowerment in Flynn's almost-final scenes. I felt it instantly, like a hit of blue meth.

Flynn rose to the occasion, as just about nobody else on the show ever did, fueled by his sense of right and wrong, and maybe by a bit by rage that for so long, everyone thought he needed to be protected. It felt like there was an almost private, inside theme there, shared with everyone of us who grew up with disabilities, always in the position of being protected and cared for, and often underestimated at the same time. Finally, Flynn got to call bullshit on what was bullshit, and protect his mom and baby sister for a change.

I felt proud of him, and to me, his confrontation, and later his telephone dismissal of Walt, were highlights of the series.

Sunday, September 29, 2013

Photo Of The Day

Young woman sitting in manual wheelchair, legs crossed, taking a selfie with a phone camera, viewed in a mirror
From tumblr blog, The Lame Dame.

Full Review: The Michael J. Fox Show

Episode 1, "Pilot"
Episode 2, "Neighbor"

Spoilers Ahead? … Yes, I reveal a few punchlines, but it's not clear yet whether this show is going to feature long-running story arcs with big secrets to keep from late viewers.

What's It About? …

Mike Henry was a beloved local news anchor in New York City, and some time ago left the job due to Parkinson's Disease. We meet Mike and his family as he decides to go back to his old job behind the anchor desk. His family is happy, because they have become the only outlets for Mike's natural enthusiasm, driving them crazy as he benevolently meddles in their everyday lives. His former producer, Harris, is glad, partly because he can parlay Mike's "inspirational" return into higher ratings. Henry is given a new assistant, a young woman who's admiration for him borders on worship. Meanwhile, his wife and three children … and his permanently irresponsible sister … deal with their own lives and quirks.

Background Information …

The big news, obviously, is that Mike Henry is played by Michael J. Fox, who actually has Parkinson's Disease. How much of a difference will this make to the insightfulness and authenticity of the show?

Annie Henry, Mike's wife, is played by Betsy Brandt, who has just finished a long and excellent run as Marie Schrader on "Breaking Bad". Here she may be able to let her comic talents shine a bit more.

Harris Green, Mike's producer at the TV station, is played by Wendell Pierce, who was Bunk, McNulty's partner on "The Wire". Will Harris become more than just a TV news version of Bunk?

The Pilot episode used several real-life NBC personalities to establish the kind of world Mike inhabits. How often will the show continue to use Matt Lauer cameos?

In Episode 2, the sexy neighbor is played by Tracy Pollan, who is Fox's wife.

The Good ...

The show kicked off with two episodes broadcast back to back, and gave us two important and relatively sophisticated disability themes right out of the gate. The Pilot episode beautifully introduced us to the concept of "inspiration porn". It didn't use that term, (I would LOVE IT if a future episode used that phrase!), but by showing us how silly it is when people over-praise and sentimentalize disabled people, it got the idea across better than an academic explanation or a direct complaint. There were three main points where the message hit home:

• When Mike predicts how the network will use slo-mo footage and heroic music to promote his return, his producer denies it, while exactly such a promo plays on the newsroom screens behind them.

• When daughter Eve's teacher gives her an F for her documentary film about Mike, because of how sentimental and phony it is.

• A throwaway moment, easy to miss, when Mike's boss unwittingly illustrates the cynicism of "inspiration porn" by suggesting that an equivalent option would be showing footage of pandas. Overcoming disabled people / cute pandas, same emotions, right?

Both "sides" of the issue get fair play. Mike isn't depicted as bitter or ungrateful for his dread of effusive praise, while his wife gets a moment when she maybe speaks for most viewers. When Mike fears that he'll get a standing ovation from his coworkers at the station, she responds, "Standing ovation? Ugh, those sons of bitches!"

My favorite direct Parkinson's Disease joke was at the breakfast table, as Mike sloooowly moves to serve his wife a scoop of scrambled eggs, until she interrupts, grabs the spoon, and says, “Can you not have a personal victory right now? We are starving.”  It is a joke at the expense of his disability, and how it annoys others, but it's gentile and truthful. It also works because by this point the show has well established that Mike is belittled only the way all sitcom (and real life) Dads are in their families. His disability is just one unique quirk that sometimes makes his family roll their eyes. He is emphatically not a dependent or lesser member of his family.

In fact, I think a key to how this show handles disability is that so far, what silliness there is in Mike isn't mainly about his disability. It's more that he's kind of an eager-beaver … an enthusiastic, straightforward optimist in a family … and a profession ... where everyone has a layer of feigned weariness and cynicism. He's a goofy, slightly out of touch Dad. We love him, but he's a little embarrassing. Nobody says it, but it feels like he probably was always that way, well before he got Parkinson's.

The second episode, titled "The Neighbor", should have been titled "Self-Image". That seems to me to have been the episode's main theme … how people see themselves and how twists in their self-image can mess them up.

First, Eve has an image of herself as a progressive person who embraces a carefully assembled group of diverse friends. She seems really excited to have found a lesbian friend, but worries that clumsy comments from her family will ruin things when the friend comes to visit. Clearly, none of them could care less either way. It's Eve who is all wound up about it, to the extent that she even gets it wrong … her new friend isn't a lesbian. She just kind of vaguely looks and dresses like a certain stereotype of lesbians, so Eve just assumed.

Meanwhile ...

Mike meets a sexy new neighbor, and makes a mild fool out of himself in seemingly having a "crush" on her. Later he tells his wife that it's not so much that he had a crush on the neighbor, but that the neighbor kind of had a crush on him. This pleased but also discombobulated him because it ran counter to his feeling that since his Parkinson's, he might not be desirable anymore. Well, the neighbor really was flirting with him a bit, and Mike's wife makes it absolutely clear that she's still attracted to him.

So far, "The Michael J. Fox Show" not only gets the disability stuff right, it digs surprisingly deep, past bland, entry-level disability awareness platitudes.

The Bad ...

I can't believe I'm saying this, but everyone talks too fast. Mike, especially, and that may be an effect of his Parkinson's Disease. I hope I'm just imagining this, or that either I get used to it or they actually manage to slow down a little. 

So far, the older son is kind of a confusing mess, the younger son is a blank slate, and Mike's older sister is shaping up to be really annoying … to us, the viewers, not just to the Henry family.

I don't really like having the morals spelled out for us by characters addressing us through the camera. Maybe it's necessary, to help reinforce the fairly ambitious disability themes the show seems to be laying out. If every episode has what my favorite Star Trek podcast calls a "You see Timmy …" moment, it will take the show down a notch.

As some critics have said, the show isn't very funny. I'm not saying they need "More Jokes!"; there have been several comedies in recent years that were hilarious without being dueling standup routines. I just hope as the rest of the characters fill out they'll each pack in more laughs by being themselves.

Conclusion …

If the show itself can improve enough to survive, then "The Michael J. Fox Show" could actually do what we always hope disability stories and characters will do, change how real people understand disability.

Further reading …

Saturday, September 28, 2013

Up Next: "Ironside"



The pilot episode is already on Hulu Plus, but I’m waiting to see it on NBC this Wednesday, October 2, at 10 PM. Also on Hulu Plus is the original “Ironside”, worth a look to compare!

Friday, September 27, 2013

The Michael J. Fox Show - First Impressions

Old TV set with wheelchair symbol on the screen
I'm still working on starting a podcast about disability in TV and movies, but until I get my act together, I'll be writing reviews. I'll typically start with day-after "First Impressions", followed a day or two later with more in-depth reviews of each episode.

The first two episodes of "The Michael J. Fox Show" were in some ways better than I thought, and at the same time a bit disappointing. And the two qualities are reversed from what I anticipated. I thought the most likely outcome would be that the show itself would be funny and energetic … promising for it's overall future and survivability … but problematic in regard to how it handled disability, despite the fact that Alex P. Keaton (sorry) Michael J. Fox knows whereof he speaks in regard to his main character's Parkinson's Disease. As it turned out, I found the show overall kind of lackluster and … frankly … poorly executed. Yet, the disability themes were much more sophisticated and pertinent than I had hoped. If this show lasts long enough, it might actually move viewers to a more nuanced understanding of disability.

More details to come in a few days ...

Petition: Disabled Veterans and Transportation

A local disability activist and the Independent Living Center where I used to work are collaborating on what at first seemed like a local problem, but now appears to have national scope. Like many communities, ours has a disabled veterans group providing van rides to medical appointments at facilities that are rather far away … for us it's often hospitals in Burligton, Vermont and Albany, New York. The problem is that none of their vans are wheelchair accessible, despite the fact that the organization is specifically for Disabled American Veterans. Not only that, but it seems to be a nation-wide pattern. Either they don't want to spend the money to buy vans with lifts or ramps, or their volunteers don't want the responsibility or perceived liability of transporting "non-ambulatory" veterans. So, if you can walk … with a cane, walker, whatever … you can get a ride. If you use a wheelchair, you're on your own.

At the ILC where I worked, we had a van for some years that we used to transport people with disabilities to doctor's appointments. It had a ramp though, and because of that we would only transport wheelchair users. We only had the one van, and we figured that if you could ride in any other kind of vehicle, you had more options. We reserved our service with people who had no other options. At the time I actually rather hated this policy, too, since we had to turn away people who didn't have their own cars, didn't have friends or family to drive them, or couldn't afford cabs. But at least the policy made some sort of sense for a disability organization.

There's a "Change.org" petition to sign:
"Currently, the jointly operated DAV-VA National Transportation Program offers free rides to Veterans needing transportation to Veterans Administration Medical facilities. Most of the vans are not wheelchair accessible leaving out the most (physically) disabled Veterans who use wheelchairs for mobility. In addition, there are written policies in place stating: "ambulatory only/no wheelchairs". This policy is discriminatory and must be changed."

Thursday, September 26, 2013

On Tonight!

The Michael J. Fox Show
9:00 PM Eastern, on NBC

I'll be watching, and here are some things I'll be watching for:

If the Parkinson's jokes are funny tonight, will they still be funny if they continue the same way week after week?\

Is the show strong enough to work if they tone down the Parkinson's stuff now and then?

Do the workplace problems and their solutions seem realistic?

Does it feel like the show is trying to teach us things about Parkinson's Disease or other disabilities?

Does the show explore different ways non-disabled people react to people with disabilities?

Does the show poke fun at non-disabled peoples' reaction to people with disabilities, as well as the disabled people themselves?

How strong and interesting are the other characters?

Am I going to watch it next week out of disability loyalty, or because I liked it?

How awesome are Betsy Brandt (from Breaking Bad) and Wendell Pierce (from The Wire)?

Wednesday, September 25, 2013

Recommended: Letters To Our Younger Selves

Letters To Thrive

There was a stretch of years in the early 2000s when one of the hottest topics in Special Education was "Transition". That's the name given to the topic of youth with disabilities in their final years of high school and what schools should be doing to help them make the best possible "transition" to adult life. Everyone wanted to figure out what combination of services and experiences would produce the best results in terms of general independence, students being more or less happy after graduation, and of course, gainful employment.

Most people interested in the topic seemed to settle on one or two general ideas. First, that schools should do more one-on-one counseling and planning with disabled students and their families, and start doing it further in advance of graduation day. Second, that schools should create more opportunities for disabled students to visit colleges and / or get work experience out in the community.

I have always been disappointed that peer mentoring didn't gain much traction. It didn't even get much in the way of proper testing and experimentation. Most funding went to training for teachers and counselors, and to work experience programs. It seemed to me that what students with disabilities needed most was real conversation, guidance, and support from adults with disabilities ... people who can speak with some authenticity about what the future can hold for kids with disabilities.

All of which I say just to explain why I'm so excited by the "Letters To Thrive" blog, where women with disabilities write letters to their younger selves. I hope either it expands to include men, or that someone else starts a similar blog for both men and women. Either way, it's a great format for the kind of wisdom it's hard to form into a curriculum or explain in a set of PowerPoints. I'm amazed something like this never came up that I heard in discussions about Transition.

I might try and write my own letter to my high-school-aged self.

Tuesday, September 24, 2013

Recommended: "Listen"

The Tumblr blog too brain fogged for this offers up what I think is a nearly perfect answer to an anonymously submitted question. The questioner seems to be reacting to the blogger's frequent posting about ways people with disabilities are treated poorly … and wants to know how people with disabilities should be treated.

The answer, in a word, is "Listen", but please do read the whole piece, it explains so much so well, so honestly, and so efficiently.

Friday, September 20, 2013

NYT Editorial on Ethan Saylor

Editorial: A Chance to Learn From a Senseless Death
The Editorial Board, New York Times - September 18, 2013

This is a good editorial about an encouraging development in the Ethan Saylor case. I have two things to add:

1. The Editorial Board says that the problem was the security guards' failure "to distinguish between mental illness and mental disability" … as if it would be okay to act as they did if Ethan had Schizophrenia instead of Down Syndrome. The problem was their failure to distinguish between disability and willful criminality. As I've said before, I also suspect it was a failure to listen to people on the scene with relevant information, but we may not know enough yet to claim this as fact.

2. The other thing is that I'd like to know whether the Governor's commission will have substantial … hopefully majority … representation of people with various disabilities. At minimum, there should be people on the commission with physical, cognitive, mental, and sensory disabilities. And they should be people who know how to serve effectively on a commission, not just people chosen to occupy a chair and make the commission look diverse.

Friday Afternoon Music



This new Superchunk album has sustained my good mood for days. Have fun spotting the album covers!

Working On A Longish Piece

I'm working on what's turning out to be a fairly long blog post that I hope will make some sense out of conficting thoughts I've had recently about disability, ableism, and what "we" want from non-disabled people and culture.

This article actually has helped me organize my thoughts somewhat, so I'll post it now and refer to it later:

Tiffiny Carlson, The Mobility Resource / Huffington Post - September 18, 2013

Thursday, September 19, 2013

What could possibly be wrong with this?

Deal would offer casino jobs for the disabled
Alana Melanson, Sentinel & Enterprise - September 19, 2013

So a casino company agrees with a developmental disability service provider to "open up employment opportunities" for the developmentally disabled people they serve, in a proposed "slots parlor". Isn't that nice? 

That's some hard-hittin', question-askin' journalism right there!

The only hint that anyone might question the wonderfulness of this "deal" is an almost joking comment that the Arc of Opportunity people aren't worried their clients will become addicted to gambling. First of all, isn't that at least a somewhat reasonable concern? But second, isn't it the least of the possible concerns here?

Are these job slots going to be pre-designated for developmentally disabled applicants referred through the Arc? Or, are they just agreeing to consider the Arc's people? What about people with disabilities not affiliated with Arc? If I lived in Leominster, Mass. would I have the inside track on one of those jobs?

How much will these workers be paid? Are they going to get at least minimum wage or more? Will there be clear opportunities for individuals to advance to better, and better-paying positions if they do a good job? Will any of the Arc workers get benefits, like health insurance?

Will the casino company pay the workers directly? Or, will they pay Arc of Opportunity a fee to staff all these positions with whoever, with Arc in turn paying the workers?

Will the other, non-disabled casino staff work alongside the Arc workers? Or, will there be walls … literal and figurative … between the Arc crews and the "regular" workers?

If an Arc worker has a concern or complaint, who will they take it to? Will they talk to the Arc, or the casino company?

If the casino company doesn't like the arrangement down the line, can they just end the agreement and all the Arc workers lose their jobs?

Why involve the Arc at all? If the positions are open anyway, why doesn't the casino just market the jobs to Arc and other disability agencies, indicating their openness to hiring, but leaving individuals to decide whether or not to apply on their own? Why the package deal? Or, would individual disabled applicants not be welcomed, if not herded and wrangled en mass by the professionals at Arc?

Is it possible that the casino company hopes the positive PR they get from this "memorandum of understanding" will help them win approval for the slots parlor, which local residents will vote on in a referendum?

It's funny how this article was clearly written as a "good news" piece, but I don't feel good about it at all.

============

Addendum:

Most of my questions assume that there really is more to this than an empty agreement ... that the Arc is basically going to supply the slots parlor with labor to fill certain jobs, similar to how a temp agency works. But if this isn't the case, if it's literally just an agreement to "open" jobs to people with disabilities, then essentially the company would be saying, "We agree to abide by non-discrimination laws ... aren't we awesome? Please vote to approve our slots parlor!"

Wednesday, September 18, 2013

Should we give "Ironside" a chance?

Does it matter that the new "Ironside", Blair Underwood, doesn't have a disability?

I'm going to take a clear, firm stand and say "Yes and No".

The first thing I want to know is whether the performance is good. If it's good … by which I mean some strong combination of authentic, realistic, nuanced, complex, and free of disability clich├ęs … then I probably won't let the lack of a first-hand disability perspective ruin my enjoyment.

If, on the other hand, the remade Ironside looks and feels like a non-disabled person's idealized or ugly conception of what it's like to be disabled, then I'll have to wonder if a real disabled actor might have done a better job.

Going back to the "if it's good" possibility, that would still lead me to ask why a disabled actor couldn't have done even better. The reason being given by the show's creators is that they want to use lots of flashbacks to incidents in Ironside's life before his injury, so they need an actor who can play both in and out of the wheelchair. But, as astute disability blogger Wheelchair Dancer points out, lots of people use wheelchairs part time, and can both walk and wheel. If they couldn't find anyone who could do both and was a great actor, then fine. Did they seriously try to find one? Or did they automatically view wheelchair use as an either / or thing? She also notes that as it is, Blair Underwood has a stunt double, who could have worked with a disabled actor to do the walking and running flashback bits.

There's also this … Who says they need a "great actor" anyway? Right now, they have a known actor, Blair Underwood, who is known because really, he is very good. On the other hand, anyone who loves TV and movies will tell you that a "name" actor isn't a guarantee of quality, and that sometimes the deepest, grittiest performances come from actors you've never heard of before. Besides, I'm not sure the new "Ironside" is really aiming to be a "prestige drama" anyway. I'd be surprised if it turns out to be, say, similar to the "Battlestar Galactica" remake … though very pleasantly surprised if it is.

I love good TV, and I have a longstanding affection for the original "Ironside", so yes, I'm going to give it a chance and I do hope above all that the new show is good, solidly entertaining, and fresh, if not profound and deep.

One thing I'll need to do is listen carefully to how wheelchair users respond to the show. I have disabilities, but I don't use a wheelchair and I don't have a spinal cord injury, so I could miss some technical inaccuracies if there are any.

A small point, perhaps ...

Okay, here's a video ...



Funny, right? Now here's one of the comments …
"I admire you very much. To start with, you're very pretty. You have fun and know how to enjoy yourself. You're also in no way limited by your amputation. Instead, you chose to share it with the world and educate us in the process. I've learned a lot from you and am grateful. You're also smart and creative. And you're funny. Thanks for being amazing."
My first reaction on reading it was that here is a perfect example of why so many people with disabilities are uncomfortable being cast as "inspirational" … and why it's so hard sometimes to explain why in a way doesn't seem sour. I agree with everything this person says, but it's like he missed the point of the video, which is that it's funny, and that she and her friend are creative, smart, and a bit goofy.

There are other videos in Christina's series where it's totally appropriate to praise her attitude and generosity in sharing her experience, but I think once in awhile she just wants to be silly, and have us join in, and not always be so serious.

Nightmare Scenario

It looks like we have just seen the end of the first round of what may be a long-term struggle between people with disabilities who use home care and the workers who support them and their labor organizations. For people with disabilities who also care about fair pay and respect for low-paid workers, it's a nightmare scenario that's been brewing for a long time.

As I understand it, this is the issue. Home care workers have previously been exempt from some (or all?) minimum wage and overtime rules. On the face of it, that seems unfair, and especially unjust treatment for people who provide such an essential and liberating service. Plus, if we want home care to grow, so more people with disabilities can live independently, outside of institutions and mommy and daddy's homes, then in the long run, better pay ought to make it easier to expand that labor pool, and get better workers into it.

On Tuesday, September 17, 2013, the Obama Administration's Department of Labor announced adoption of new rules that will make minimum wage and overtime laws apply to home care workers. The new rules are set to go into effect January 1, 2015. I'm a progressive, and this seems to me like a very good thing.

There are two problems with this for people with disabilities.

First, all indications are that the knock-on effect of higher pay will be that state governments … which overwhelmingly are the funders of home care … will cope with the increased cost by cutting hours of service, and / or tinkering around with their own rules so that workers simply won't earn overtime, and people with disabilities (and home care agencies) will have to hire more people for limited hours. This, in a marketplace where most agencies and individuals find it extremely hard to hire, train, and retain enough workers to do the job. In theory, and in the long run, perhaps it will all even out, as home care becomes a less strenuous and more fairly paid line of work. But in the meantime, how many people with disabilities are going to wind up back in nursing homes because "oops", they or the agency just can't find enough staff to provide their care?

The other problem is more of a political one. It seems like the Obama DOL went out of its way to avoid dealing meaningfully with the disability community's concerns. They even did the most insulting thing of all … holding a "listening session" timed so that it would be functionally meaningless, just so they could say they consulted us. I know we're not supposed to hold political grudges when the real problem is human suffering, but why did they have to be insulting? I get that there's a possibly insoluble conflict between too goods here, but why not just acknowledge it, tell us we're going to lose this one, and pledge to help make the states whole, so nobody loses their independence? What about paring the DOL announcement with something we've been looking for on the subject of home care, like solidifying and expanding consumer direction models of home care?

I can't help thinking that once again, part of them problem is that home care … especially home care directed by individuals rather than agencies … is still considered a weird anomaly in mainstream politics and policy. Politicians and policymakers are used to refereeing clashes of Titans … like Health Care Unions! vs. Nursing Home Corporations! They probably saw "the other side" in this matter as the bigger home care agencies, not 35 year olds in wheelchairs or grandmas with bad hips or Alzheimers.

Whatever the explanation, I would think that the next steps should be:

1. Document every single case where someone loses meaningful independence due solely to the changes, and lay them on the feet of the Administration, and,

2. Try to come up with a creative way to preserve the best changes for the workers while making up for the increased cost and undoing the administrative disruption as quickly as possible.

We can't just become the Chamber of Commerce and oppose every proposed improvement in the pay and working conditions of home care workers. In the context of modern capitalism, we are natural enemies, but as people actually live their lives, people with disabilities and home care workers are natural friends and allies.

People with disabilities need smart, ethical, contentious people to get us out of bed, dress, and wipe our butts. We want home care workers to be our "Pit Crews", as Smart Ass Cripple calls them ... not our serfs.

But, a little meaningful consultation would have been nice.

A little background:

U.S. Department of Labor

Chris Megerian, Los Angeles Times - September 17, 2013

ADAPT, (American Disabled for Attendant Programs Today)

============

Addendum:

Here's a good overview of the issue from Disability Scoop. Among other things, it shows that two very strong and reputable disability organizations have different opinions on this.

Monday, September 16, 2013

Walt, Jr., Hank, and Tio Salamanca

I've been burning through episodes of "Breaking Bad" on Netflix. I'm almost done with Season 4, and there are more interesting disability themes than I thought. There's Walter, Jr. of course. His CP lays nicely in the background, only very rarely playing a crucial part in a side story or two. But a couple of those times have been really interesting interactions between Walter, Jr. and Hank, who is slowly, painfully recovering from terrible injuries that have him still in a wheelchair what seems like months after being attacked.

At first, I didn't buy Hank's infantile pouting, self-pity, and meanness to everyone around him. I get that Hank has always been a physical man, who might be expected to take possibly permanent disability pretty hard. On the other hand, he's also supposed to be be about perseverance, outside the box thinking, and swagger, which could lead a man like him to tough out rehab. and even disability with more aplomb that he has.

Now Hank is back on the case, so to speak, his attitude does seem to have changed. In the meantime, we got a couple of strong but subtle scenes where Walter, Jr. and Hank almost seem to bond with each other over the common experience of disability. I might be reading too much into these little scenes, but I felt like I saw it, and I liked it.

Plus, there's Tio Salamanca, the old Mexican Cartel dude who's been around on the show, off and on since the Second Season … the guy in the wheelchair, with the oxygen cannula and the "Ding! Ding! Ding!" bell he uses to communicate … along with his intense facial contortions … presumably because of a stroke some years before. Gus Fring, in particular, uses Salamanca's "helpless" situation to sweeten his revenge. Salamanca has no choice but to sit there in his wheelchair, in the nursing home, and listen to Gus describe the latest details of his revenge against various members of his family. He can't say anything, or do anything about it except tremble with rage. It's a potent way to underscore what a badass Gus is, and don't get me wrong, the old man is a horrible human being, we know this. But, what should we feel about how the old man's disability is used here, by the characters, but also by the writers? Earlier in the series, it helped emphasize his power. The sheer intensity of his will and the loyalty of his family made Salamanca powerful, almost in reverse proportion to his physical abilities. That little bell spoke loud. Now, it seems the opposite is true. All he can do is sit there. He doesn't even seem to have his bell anymore. Is that what happens when you go into a nursing home, you loose whatever bit of power and autonomy you had left, even if you are a feared drug lord?

It seems like disability stuff can show up anywhere in pop culture these days, and the parts it plays can be complex and multilayered as some of the shows in which it appears.

Sunday, September 15, 2013

Podcast Partner Wanted!

stick figure standing next to old-style radio microphone
(Tap, tap, tap) Are we on? Is this on? Can you hear me?

I am looking for someone to partner with me in a podcast about disability on television and in the movies.

I hope to find someone with a disability, who is also as steeped in great television, film and pop culture as I am. Someone with broadcast or podcast experience would be great, but not essential. What is essential is a passion for watching, thinking about, discussing, and even dissecting how disability is depicted and used in popular culture … for good and for ill.

We'll do more than just catalog all the cliches and offensive language. We can do that, too, but what I really want to do is explore the question of what makes a "good" TV show or movie, and what makes a "bad" one. Can disabled characters make us laugh without being insulting? Do positive disabled characters always have to be "inspirational?" Do actors and actresses still dive into disabled characters hoping to win an easy Oscar? Do disability stories in popular culture help defuse stereotypes, or support them?

stylized plaque reading "PODCAST" in capital lettersI plan on using Skype to record my partner's portion of weekly reviews and discussions, beginning with two of this season's new TV shows, the new "Ironside" and "The Michael J. Fox Show". If all goes well and we get into a nice rhythm, we might add discussions of the disabled characters in "Game Of Thrones", which could bring us some crossover listeners, and would in any case be really fun. Where we go from there is our choice … into the great disability-themed movies, older disability-themed TV shows, examinations of memorable disabled characters, etc.

old TV set with wheelchair symbol on the screen
I can't offer any pay. This would be entirely a volunteer gig. But I'll pay for all the startup costs … including any accessories you might need to buy on your end. All I ask is that you supply your own computer and Internet connection.

Are you interested? Are you wondering who the heck would listen? Are you interested whether anyone listens or not? If you're seriously considering joining me in this project, send me an email with answers to the following questions:

============

Your name where you live … (I don't need your postal address right now, just your city, state, and / or country)

A brief description of your disability. If you don't have a disability, explain your background and interest in disability issues.

What kind of computer equipment, software, and Internet service you have.

Describe any experience you have, if any, in radio, podcasting, and / or sound editing and production.

Your 5 favorite TV shows of all time.

Your 5 favorite films of all time.

============

You can answer all this in an email, or, how about recording your answers and sending them to me as a sound file? That way, I'd get an idea of how you sound!

Send me an email with your answer … or your questions … at:


I look forward to hearing from you!

Friday, September 13, 2013

Recommended: Speech Apps

In May 2012, I had surgery. It went well and I'm fine now. It was significant enough, though, that I spent 3 or 4 days mostly unable to speak. I knew this would happen going in, so I was almost looking forward to making real, practical use of some speech output apps I'd long had on my iPhone.

They worked, sort of, though it was just as easy to type what I wanted to say and hand the phone to people to read themselves. It wasn't very fun or liberating, either, because typing on that itty bitty on-screen keyboard takes too long. I gave up on the cool technology pretty quickly in favor of nodding and grunting, and by the time that started being really annoying, I could speak again.

I hadn't thought about this until just now when I found Low Cost AAC Apps for Speech, via Livingwithdisability. I hope I don't need to have surgery again any time soon, but if I do, some of these apps look like they'd serve the purpose better.

"Failure Of Manners"

I was reading an Atlantic.com blog post by Ta-Nehisi Coates and this sentence stopped me ...
"The myth of racism as a failure of manners is convenient because it conceals what lies at the heart of any system of exploitation--power."
It caught my attention because I liked the phrase, "failure of manners", and I think the point works as well for disability and ableism as it does for race and racism. Maybe better.

It seems like the dominant view of ableism is that it's mainly about people saying clumsy, inadvertently insulting things … a "failure of manners". However, the relatively small number of people who have thought more than superficially about disability prejudice and discrimination tend to think instead that they are tips of the iceberg. Underneath lies much more profound … profoundly wrong … assumptions and injustices.

Ableism surely is a failure of manners, but it is also much more. What more it is, is why we talk about it.

P.S.: The Coates article is worth reading for its own sake. His stuff usually is.

Thursday, September 12, 2013

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.

Wednesday, September 11, 2013

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.

Tuesday, September 10, 2013

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.

Friday, September 6, 2013

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.

Thursday, September 5, 2013

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".