Tuesday, November 19, 2013

Here's The Thing ...

There's not much point in making something "almost" accessible.

My Obamacare Experience, Part II

I said back in early October that I would document my Obamacare experience, so here's the next installment.

A few days ago, I went back to New York State's Insurance Exchange website, nystateofhealth.ny.gov. I found that the account I wasn't sure I'd properly set up in early October, was set up properly. I then started a full trip through the website to find out what I might qualify for, given my slightly unusual situation. So far, everything has worked out fine, and I have a pretty good idea of what's going to happen with my health insurance.

First, I'll continue with a slightly different plan that my former employer has chosen, which I'll pay for through the COBRA provisions. Sometime in January or February, if the information I have is correct, I'll move over to Medicaid, which I will stay with unless and until I find a job that ups my income sufficiently and / or provides better coverage. Given the breadth of Medicaid coverage in New York, it may be hard to find a better policy for any price, but you never know.

My conclusions? Speaking only for myself ...

1. New York’s Exchange website worked fine, supported by a helpful and fairly quick phone call when I had trouble understanding one of the questions put to me.

2. It looks like I have marginally more choices in health insurance now than I've ever had before, more possible contingency plans should my employment or money situation change, and a confidence I never had before that my health insurance ... which is absolutely essential to my survival ... will no longer depend on my employment status.

By the way, I once again recommend following Sarah Kliff’s daily updates on the Affordable Care Act, at Washington Post’s Wonkblog. Her reports are easy to understand, sober, and in-depth.

"Should I Stay Or Should I Go?"

advocacy topic icon
That Crazy Cripple Chick - November 12, 2013

Bad Cripple - November 17, 2013

Megan Rogers, Inside Higher Ed - November 19, 2013

Ellen Seidman, Love That Max: Special Needs Blog - November 19, 2013

I’ve read four pieces on accessibility failures in just the last week. That may not sound like many, but it is unusual. Most disability-related stories and blog posts aren’t specifically about accessibility, so this many in such a short time looks like a mini-trend. At any rate, reading them one after the other, I think you’ll find the same themes cropping up.

Of course, the most obvious is that businesses and other public spaces are still not as wheelchair accessible as they should be. The only thing that amazes me more than this is the number of people who are amazed by this. I can’t tell you how many non-disabled people have told me about trying to have dinner at a restaurant with a disabled relative, and asking me, without irony, “Didn’t the ADA require all places to be accessible long ago?” Welcome to our world!

What's really got me thinking though is the variety of ways people respond to accessibility barriers. The person in the first article wrote a letter to convention organizers. The second left the conference to which he’d been personally invited. In a followup, we see that this person did follow up and got some response from the organizers, though their stated action plan seems to me to leave plenty of room for further procrastination and excuse-making. Then we have a mother who comes at the issue from a different angle. As a parent, she’s in some ways more distant from the issue, and at the same time potentially more fierce in her response.

album cover of The Clash - Combat Rock
When I think about what’s the “right” response to lack of accessibility, I’m reminded of that line from that song by The Clash:

"Should I stay or should I go now?
If I go there will be trouble,
If I stay it will be double."

Is it better to leave the place and follow up later, or stay and make your point on the scene, publicly? I think a lot depends on the person, which methods work best for them and fit their personalities. It would have been interesting if William Peace (a.k.a. “Bad Cripple”) had stayed at the conference and called the organizers out for their … no other word for it … stupidity. But I trust he knew himself, and perhaps knew his audience too, and did the best, most effective thing for the occasion. Becki, Izabella’s mother, had other concerns and arguably more at stake. If she’d basically boycotted her child’s pageant, her child would have suffered even more, and at four years old is probably too young to understand the trade-offs and sacrifices involved in self-advocacy.

Every situation and every person is different, but we all have to grapple with the same questions. Am I being unreasonable? Is the access that’s there “good enough”, even if it isn’t perfect? Am I good with confrontation? Can I keep my cool while making a strong impression? Can I even afford to leave and try somewhere else right now? Am I advocating for myself, for now, or for the next visitor with a disability … for posterity? Is the problem a truly "innocent" mistake, or should this person or organization really know better? Does it matter?

And of course, will I live to see a day when this kind of situation is truly rare?