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)?

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.

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.

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:

10 Things Every Person With A Disability Should Hear (All The Time!)

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

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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!"

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 clichés … 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:

Minimum Wage and Overtime Pay for Direct Care Workers

U.S. Department of Labor

Cost of caring for elderly, disabled Californians to rise

Chris Megerian, Los Angeles Times - September 17, 2013

ADAPT tells President Obama and Labor Secretary Perez "Stop making decisions about us without us!"

ADAPT, (American Disabled for Attendant Programs Today)

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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.

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.

Podcast Partner Wanted!

(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?

I 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.

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:

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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.

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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:

apulrang@icloud.com

I look forward to hearing from you!

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.