Revisiting "The Man He Became": Part One

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Cover of the book "The Man He Became" by James Tobin with photo of Franklin Roosevelt
This Tuesday, Wednesday, and Thursday, I’m taking a break from regular blogging, and instead re-run my three-part review of James Tobin’s book, “The Man He Became,” about Franklin D. Roosevelt’s bout with Polio, his rehabilitation, and his return to politics as a disabled man.

Here is a sample, then a link to Part One:

"'The Man He Became' is fascinating and emotionally engaging. I thought I would learn things I didn’t know before. I sensed that I would agree with some of Tobin’s new conclusions. What I didn’t expect was to feel so personally close to Franklin Roosevelt as he went through his bout with Polio. And I didn’t expect to recognize so many of the social habits, irritations, and forces that FDR had to contend with. The way the story is shaping up, it really does seem like FDR was a forerunner of today’s “social model” of disability, whether or not he knew it or Intended to be."

January 25, 2014

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What’s The Next Big Victory for the Disability Community?

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Victory! in capital letters, row of raised fists of different colors below

The Supreme Court’s decision affirming gay marriage nationwide has me wondering whether there are remaining unresolved issues that are as significant for disabled people as gay marriage is for the LGBTQ community.

The Americans with Disabilities Act of 1990 qualifies. So does the Olmstead Supreme Court decision that came out of the law later. Although full implementation is very slow and ongoing, those are milestones of our past. What big items are on the disability community's "To Do List?"

Some of my Twitter friends and fellow disability bloggers are noting that many disabled people still can't marry, for legal and bureaucratic reasons. For example:


 @POTUS next step is to remove the penalty so people with disabilities can keep needed services and still get marry http://t.co/TKYXHdSYAb

This tweet referrs to “marriage penalties” built into Social Security and other income support programs that make it practically impossible for many of us to marry. Then there are the developmental disability support programs and "group homes" that discourage or outright prohibit marriage and cohabitation.

In both cases, it's not that marriage is illegal for disabled people, it's more like an official disincentive, sometimes an extremely powerful one, that makes marriage a practical impossibility. IF you choose to get married or live together as a couple, THEN we will reduce or stop your support services.

In both cases, it’s also entirely possible to fix the situation by passing laws to address the problem directly. A law could make it illegal for developmental disability programs to refuse service to clients/consumers who decide to marry or live together. A law could specifically affirm cohabitation rights in any sort of long term care facility, including “group homes.” A change in law or regulations could make it so individual Social Security benefit amounts and eligibility for other programs wouldn’t change when recipients marry.

As potential victories go, these are bit wonkish and hard to explain. They aren't as emotionally resonant as yesterday's marriage equality victory, but they probably should be.

A few other longstanding disability issues come to mind.

Ending developmental disability exceptions to minimum wage would be another major victory for the disability community, and possibly more feasible than closing all sheltered workshops. Decisively undoing work disincentives would be fantastic, too, but probably complicated and hard to achieve in a political environment where lawmakers think we are paying out too much in disability benefits. Progress there may have to come piece by piece, one careful legislation at a time.

“Entitlement” is a dirty word these days, both politically an socially. But we might want to rethink that, an explore whether disabled people should have an absolute entitlement to certain key assets … health care, higher education, a drivable car. Solidifying a right to any one these would be a major victory and game-changer for disabled people.

Most of the rest of our problems are either social, and not responsive to legislation … like everyday ableism and workaday bureaucracy, or related to existing laws that suffer from partial enforcement … like the accessibility provisions of the Americans with Disabilities Act and the Olmstead Supreme Court decision.

Aside from dealing with marriage penalties and barriers, and aside from better ADA and Olmstead enforcement, what new disability rights milestones are on the horizon? What major, specific changes do we want to celebrate in the next few years?

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TED Talk On Autism History

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I haven’t seen this TED Talk posted very much on Facebook or referred to on other social media. I’m surprised. Autism is a pretty intense topic, with fully-formed ideas and ideologies from at least two or three different perspectives. The speaker seems to come from a neurodiversity point of view, though he only hints at how deep the divide can be between, for instance, Autism Speaks supporters and autistic bloggers. The value here is the history, which helps explain how all the different paradigms of autism got to be the way they are. If nothing else, it’s helpful to know that autism has always been controversial, and our understanding of it has always been at least as ideological as scientific.

I also think there are insights here that can help increase understanding in both of the main camps. People with the more medical-model view that autism is a public health disaster get more evidence that it is so much more and different than a disease in the typical sense of the word. Plus, neurodiversity advocates might gain some understanding of why so many parents are resistant to different concepts of autism, which are often expressed as passionate criticism of what parents do with autism ... since parents, and particularly women, were previously all-out blamed for autism. I can even understand a little more why some parents don't care what science tells them about, say, vaccines, since they can point to how wrong about autism experts have been over the years.

If I'm missing important points about this video, I would love to hear about it.

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Throwback Thursday

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Illustration of the time machine from the film "Time Machine"
Two years ago in Disability Thinking: NBC Looks At “Sheltered Workshops”.

I’m not sure, but it feels like we are a lot closer to the end of Sheltered Workshops than we were two years ago. Maybe not the end, but a situation where they are quite rare seen as weird, not the standard employment program for developmentally disabled people. For more on this: “Serfdom” and Ending Sheltered Workshops: It Can Work.

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We Are The Enemy

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Caduceus
Tom Jackman, Washington Post - June 23, 2015

(Via Eschaton)

I feel like this is another example of something disabled people encounter a lot from the medical profession … an underlying, mostly unstated belief that patients are the enemy.

We are stupid. We delude ourselves. We just want drugs. We crave attention. We whine and whimper and we should learn to suck it up. There’s always a “real story” we’re not telling. We lie.

I think this is part of medical culture, and it affects everyone. But disabled people experience it more often, because by definition we are harder to treat and figure out. It takes more effort to treat us, and almost nobody really likes having to work harder on the job. Plus, if our symptoms and complaints don’t match up with familiar patterns, it must be because we’re not telling things right, or maybe it’s all in our heads.
"The doctors then discussed “misleading and avoiding” the man after he awoke, and Shah reportedly told an assistant to convince the man that he had spoken with Shah and “you just don’t remember it.” Ingham suggested Shah receive an urgent “fake page” and said, “I’ve done the fake page before,” the complaint states. “Round and round we go. Wheel of annoying patients we go. Where it’ll land, nobody knows,” Ingham reportedly said."
I’m not saying that everyone in the medical profession thinks or acts the way the people in the article did. Most doctors and nurses are better than this, most of the time. But I think everyone in the profession recognizes the attitude. Other than outright greed, it is the medical profession’s principal dark side … seeing patients as obstacles or enemies to be overcome or outwitted.

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Disability.TV - Ep. 25 - Girls: Jessa & Beedie

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In this episode, we focus not on a whole TV series, but a short storyline within a series … the Jessa and Beedie story on HBO’s “Girls.” It starts off as an assisted suicide story, but doesn’t quite end that way.

“Girls" … IMDB.
Editorial on Assisted Suicide … By Marilyn Golden of the Disability Rights Education and Defense Fund.
Season 3, Episode 12 Two Plane Rides and Season 4, Episode 1 Iowa … “Girls” HBO Episode Summaries.
Disability.TV Star Ratings Google Doc … Star ratings for every show reviewed on the Disability.TV Podcast.

Jessa

Beedie

Weekly Reading List

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Illustration of a stack of books of different colors.
A collection of disability-related articles and blog posts I read last week, but didn’t have a chance to link to or discuss. It’s an opportunity to catch up with some of the good stuff that’s out there, but doesn’t fit neatly into the week's “big stories.”

Dr. Peter Rosenbaum, Bloom - June 18, 2015

Cheryl M. Jorgensen, Swiftalk - November 10, 2014

Rachel Kassenbrock, The Mighty - May 16, 2015

Three straight-up advice lists, all from writers who I am pretty sure don’t have disabilities. Ordinarily I would be skeptical, and I was at first, but these articles all include good ideas worth reading.

Beth Parker, KTTV Los Angeles - June 18, 2015

Stuff like this will continue to happen much more frequently than can be explained by pure happenstance. These are unfortunate omissions, not deliberate exclusions. But they happen more often because people continue to treat disability concerns as “special” issues and afterthoughts. My guess is that someone thought of accessibility the night before, called the company, and the company said “no” because nobody had asked them about it earlier. Or, someone at the company originally said, “of course we’ll accommodate a wheelchair user,” but kinda forgot to write it into the contract or work order or whatever. Plan it all out, then, if you remember, ask about accessibility. That’s the way things happen, and it does say loud and clear where disabled people come on most peoples’ and organizations’ priority lists.

Ari Ne’eman, Autistic Self Advocacy Network - June 18, 2015

No offense to our many great leaders, but I wish the disability rights movement as a whole had a few more leaders as eloquent as Ari Ne’eman is for the autistic community. It’s a real bonus that he often includes the broader disability community in his statements of principle.

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What Does The President Think?

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Old-fashioned microphone with American flag behind
This morning I listened to the interview with President Barack Obama on Marc Maron’s WTF Podcast. I enjoyed it. I didn’t hear any potential headlines, (Ooops, forgot about this), but it was interesting to hear President Obama discuss how he manages to remain calm in the face of constant annoyances and disappointments. He certainly convinced me that his supposed “aloofness” isn't because he’s never annoyed and disappointed.

The most interesting moment was probably unplanned. Marc asked the President what about him irritates the  First Lady, Michelle. He cited the habit of being late. And then he explained that Michelle is a stickler for being on time or early for things because her father had Multiple Sclerosis, and always had to get ready for things well in advance. He had to get up hours before most people, just to get dressed on time, and he always arrived at big events, like a basketball game, long before start time because of how long it would take him to get to his seat. President Obama name checked the Americans with Disabilities Act, too, suggesting that this kind of advanced prep was even more necessary before the ADA improved accessibility.

It was a nice moment, where disability was mentioned as both a personal and a systemic issue, but casually, without making a big deal out of it, and seemingly off the cuff.

I would still love to hear President Obama talk at length and in detail about how he views the broad scope and direction of disability issues. I don’t even know if he has personal views on disability policy, beyond the  positions and endorsements we expect from a moderate Democrat in high public office. Maybe it should be a goal for our community … for President Obama to make a major disability policy and vision address before he leaves office.

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