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)



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.