Saturday, July 4, 2015

Awareness Or Activism?

Word cloud around the word "Ideas"
John Pring, Disability News Service - July 3, 2015

You don’t have to understand the intricacies of disability policy in the UK to realize that this article is about the enduring conflict between two approaches to disability advocacy … Activism vs. Awareness.

There are many ways to define these terms. What we see here is two different ways to accomplish roughly the same goal, significantly improving employment prospects for people with disabilities.

The Awareness approach is to persuade employers to hire more disabled people. It’s based on the assumption that the unemployment is high for disabled people mainly because employers don’t understand disability and harbor misconceptions about the capabilities of disabled people. If we can just reach all he employers, sit them down, explain where their thinking is off base, and maybe introduce them to a few highly capable and charismatic disabled people, then things will change for the better. All this requires maintaining more or less friendly, patient relations with employers. Employers don’t have to attend our seminars, and in fact, hiring itself is basically a matter of choice, not obligation, so accusing and alienating employers won’t help.

The Advocacy approach focuses more on structural issues that hold down employment of people with disabilities. This may include work disincentives, (in which you actually lose money due to reduced benefits when you take a job), a mismatch between open jobs and applicants’ qualifications, inaccessible workplaces, and both deliberate and unconscious discrimination. After decades of anti-discrimination laws that often seem toothless, it is easy to conclude that employers will never change their practices unless forced to do so. In this view, disability awareness seminars, corporate-level networking, and aspirational slogans are wastes of time. Worse, they can function as cover for people who don’t want to do anything of substance, but need to appear as if they are.

The Awareness approach is generally optimistic, but runs the risk of being naive, and coopted and hijacked by the people we are trying to persuade. As the article linked above suggests, it is frighteningly easy for bureaucracies to cynically adopt progressive rhetoric that bares no resemblance to their policies and practices.

The Advocacy approach is, at least on the surface, pessimistic, and many people unpleasant, but may be more realistic and effective when carefully targeted. Personally, I prefer Awareness as an activity, but I have more actual faith in Activism to actually accomplish things.

Within the disability community, these two approaches are not just strategies, they are separate subcultures.

Activists and awareness people rarely work together or talk to each other. And people seem to gravitate towards one or the other approach naturally, based as much on temperament as philosophy. Some of us enjoy teaching and shmoozing. Others prefer campaigning and protesting. For some, asking people to change feels like begging. Others don’t like the anger and sometimes irrationality they perceive in activism. It is both a strategic and a personal choice.

I still think there are arguments on both sides when it comes to improving the employment picture for disabled people. I’m skeptical that mere persuasion and “disability awareness” will ever make much of a difference in employment. Yet, I’m equally doubtful about how effective any sort of hiring quota or mandatory system would be in the long run. Both approaches seem rather futile to me.

How do we dramatically improve employment for disabled people? It’s one of the few disability rights questions I really don’t know how to answer.

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Friday, July 3, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
Time for another weekend Disability Blogger Link-Up. As always, you can post anything you like, as long as its related to disability.

Technical note: To make the links easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the address of the item you are posting.

Then click the "Enter" button. That's it!

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next regular Disability Blogger Link-Up Friday, July 17, 2015.

Thursday, July 2, 2015

Revisiting "The Man He Became": Part Three

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 Three:

"I love the fact that while Roosevelt was an extremely private person about his own situation, he actively sought and almost reveled in connections with others who had Polio. He was a natural leader, but he was also a good listener and good learner, whether the teacher was a distinguished doctor or a 15 year old kid who had lived with Polio for longer than he had. Without realizing it, Roosevelt was pioneering “Peer Counseling”, not just as an individual pursuit, but in a more formal way at Warm Springs."

February 16, 2014

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Wednesday, July 1, 2015

Revisiting "The Man He Became": Part Two

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 Two:

"I was struck by Roosevelt’s frequent use of the made-up word, “Infradig” … meaning things not to be talked about. Anything to do with his disability was “Infradig” in normal conversation. There were two exceptions ... he would discuss his condition with medical professionals and with other people who had Polio. Tobin here starts to mention letters Roosevelt exchanged with other people who had Polio … people from all walks of life, who had nothing in common with him except Polio. I was enormously moved to read that this exceptionally private man was so open with details of his life with people he barely knew, because he sought their advice and, eventually, began to offer his advice to them."

February 8, 2015

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Tuesday, June 30, 2015

Revisiting "The Man He Became": Part One


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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Saturday, June 27, 2015

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

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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Friday, June 26, 2015

TED Talk On Autism History



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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Thursday, June 25, 2015

Throwback Thursday

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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Wednesday, June 24, 2015

We Are The Enemy

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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Tuesday, June 23, 2015

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




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

Monday, June 22, 2015

Weekly Reading List

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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