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.

"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.

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.