Monday, July 6, 2015

Ideas, Not Mandates

Two white 3-d stick figures shaking hands, each out of a laptop screen
So, first I read this blog post by Rob J. Quinn:

Rob J. Quinn, I’m Not Here To Inspire You - June 29, 2015

"But as I peruse Twitter and the blogs of people who specifically don the cap of advocate, I recently came across the term ableism. It’s apparently our version of racism, and to my surprise the term has been around for a while. And I wonder, as we tweet and write at the top of our lungs about the injustice that people with disabilities often face—the latest issue seemingly piggybacking off he Supreme Court ruling giving homosexuals the right to marry to discuss the “marriage penalty” some people with disabilities face in losing benefits due to a spouse’s income—how this post will be viewed."

"Am I being ableist against my own community for pining to be able-bodied? Am I rejecting my own identity?"

I started thinking about responding to this piece, mostly to reassure Rob and other fellow disabled people that we all have moments and days when we are sick of being disabled. And I’m not talking just about being sick of the inaccessibility and ableism that make us more disabled … though there is that … but also being sick of our own, actual physical or mental conditions.

Then, just a day later, I ran across a post on Tumblr, a reblog by Wheelchair Problems of a post by Fuckyoumyalgia:

"all of these are perfectly valid relationships to have w/ your disability. none of them are wrong or right or inherently healthy or unhealthy. they just are what they are. if you wanna improve your relationship w/ your disability that’s fine. if you don’t that’s fine too."

"the only thing that’s not fine is telling someone that their relationship w/ their own disability is wrong"

Bingo.

The thing is, it’s possible take some of the most commonly talked about tenets of “disability culture” as mandated beliefs or litmus tests. But really they are just ideas meant to break people out of far more common and truly self-destructive ideas people have about disability.

Too many disabled people think as Rob did about his disability, but all the time, not just for a moment or a day. Too many disabled people view accessibility as a special benefit and accommodation as some kind of favor. Too many disabled people internalize low expectations for themselves and spend their whole lives wishing they were normal.

That’s partly why disabled activists and Twitterers hammer on self-acceptance, double down on not wanting to be “cured”, and “call out” ableist language and “inspiration porn.” There are directions in disability thought that seem to be more productive and helpful for disabled people in the long run, and they mostly revolve around self-acceptance and asserting our rights. That doesn’t mean we are all obligated to feel proud, empowered, and bad-ass 24/7.

Because as the Tumblr post suggests, two other pillars of disability culture are personal choice and no longer allowing ourselves to be shamed. It is important to promote emerging progressive ideas about disability, if for no other reason than to make sure disabled people know there are many ways to think about their disabilities. But it will never do for us to tell each other that any of us are doing disability wrong.

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Sunday, July 5, 2015

Weekly Reading List

Illustration of a stack of books of different colors.
A selection 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.”

Dominick Evans - June 29, 2015

Trigger warning, I guess, for an emotionally hard-hitting account of abuse and neglect of a disabled person. I read this several times, so I could appreciate it on a few different levels. Two things in particular stay with me:
1. Dominick provides a very clear and full explanation of what Personal Care Attendant services are for and how they work. It’s a surpassingly hard thing to explain to people who have no exposure to it, yet it is absolutely central to the lives of so many “severely” disabled people.

2. The article also shows how “emotional” abuse can be as harmful as physical abuse. For those who don’t experience it, emotional abuse can seem like a slippery idea, something bad but not in the same league as being beaten up. But so often it is just as damaging, or more.

The article is worth reading, even if it’s painful.

Suzanne Barlyn and Elizabeth Dilts, Reuters - July 1, 2015

This news article relates in a way to Dominick’s article above. I say that because both articles either explicitly or implicitly suggest the need for some outside, third-party authorities to protect “vulnerable” people. The need is there for something, but protective measures always run the risk of robbing the beneficiaries of choice, control, and agency. Fighting abuse and exploitation isn’t simple.

Mike Ervin, Smart Ass Cripple - June 23, 2015

Another terrific piece by Smart Ass Cripple. We talk a lot about better accessibility being good for businesses, but how do businesses decide which markets matter and which don’t? Why do disabled customers always seem to be at the bottom of their priority lists?

Meriah Nichols, A Little Moxie - June 26, 2015

This may be the best article on disability terminology I have ever seen. Mariah captures both the information and the tone of debate over what we call ourselves and what we want others to call us.

Maria Town, CP Shoes - July 4, 2015

It’s kind of ridiculous how happy it made me on the 4th to learn that one of the signers of the Declaration of Independence had a disability. And the man’s quote is a real winner. It should be one of the disability community’s iconic statements.

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Weekly Wrap-Up

Illustration of a calendar with a red pin in it
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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.

The two approaches each claim in various ways to be the “best," most “practical” way to go for making life better in a systemic way for all disabled people. It’s probably closer to the truth to say that we need both of these approaches, each applied as needed to respond to specific situations.

Yet, within the disability community, these two approaches are not just strategies, they are almost separate subcultures.

Activists and trainers 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 people 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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