Stuff That Worries Me

Photo of a man's head from behind, against a gray background, with a sketched cloud raining over his head
I’ve decided to start a new recurring feature called "Stuff That Worries Me."

Obviously, I wouldn't bother writing about things if I didn't want people to pay attention and maybe see things my way. That said, I hope readers will take these as just things I'm thinking about, not dire warnings or bitter, angry criticisms. You could call it "Concern Trolling," but my understanding is that true Concern Trolls use "self-criticism" dishonestly, to deliberately lead astray.

My worries may well be unwarranted, nitpicky, and annoying, but they'll at least be honest ... what I am actually thinking ... and from a disability rights perspective, not some other ideology in disguise.

Here’s the first one:

Whenever I talk to non-disabled people and try to describe the things that disability bloggers blog about, it all sounds a lot less important coming out of my mouth than when we blog amongst ourselves. This reminds me that most people still don't get why "disability issues" are important. People realize they are important to us, but not IMPORTANT. Most people don’t have any strong opinions about disability issues, and can’t really imagine them being interesting to anyone outside the disability community.

On the other hand, this feeling might also indicate that some of what we blog about is, in some sense, actually trivial. That's fine for some of the things we’re passionate about. But, I worry that if we can't prioritize issues within the disability community, how can we hope to focus everyone else's attention on what's really urgent?

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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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About

Disability Thinking is a Blog and a Podcast about disability issues, experience, and culture. For the most part, it is a personal project, though it also occasionally includes work by guests.

Disability Thinking runs on a loose schedule. Most Sundays, I post a Weekly Wrap-Up of the previous week’s blog posts, a Storify of the best Tweets from that week, and a Weekly Reading List. Mondays through Thursdays I post one or two things every day, unless I take a “day off”, in which case, I usually post something about that. Every Thursday I do a Throwback Thursday post ... an item from one or two years ago that day. Every other Friday, I post a Disability Blogger Link-Up, where anyone who wants to can post a favorite piece of writing about disability for others to read. It’s a way for other disability bloggers to boost readership and for readers to sample the diversity and scope of disability blogging.
Disability.TV is an audio podcast about disability on television. A new episode is posted roughly every other Saturday. Sometimes I have guests, sometimes I’m solo. Each episode focuses on a TV show, an individual episode, a TV genre, or some other specific topic having to do with how disability is depicted on TV, and what it might mean for disabled people in real life. Let me know if there is a particular topic or TV show you would like me to talk about, or if you would like to be a guest on the podcast. Podcast episodes are posted on the Blog and on a separate Podcast Page. You can also subscribe for free and get all episodes automatically, through iTunes or Stitcher.

You can keep up with Disability Thinking through my various social media accounts and pages:


Freelance Writing

I am available to write articles or guest posts on disability-related themes for other publications and blogs. I am also happy to consider guest appearances on related podcasts on disability, media, and popular culture.

If you would like to republish something I have already written, please contact me first, but feel free to link to and comment on any of my posts as you see fit.

If you have questions or comments about my blog, feel free to contact me. Send comments and inquiries to my email address: apulrang@icloud.com, or you can use messaging in Facebook, Twitter, or Linkedin. I look forward to hearing from you.

Biography

My name is Andrew D. Pulrang. I was born in 1967, in Plattsburgh, New York, a small city in Northeastern New York, on Lake Champlain, and an hour’s drive south of Montreal, Quebec.

I lived in Plattsburgh until 1980, when my parents moved us to Tumwater, Washington. I attended Tumwater High School, where I graduated in 1985.

Later that summer I had a health crisis, which led to my starting to use a ventilator to breathe at night, which I have done ever since. A few days after having a tracheostomy tube installed so I could use the ventilator, I started Freshman Year classes at Dartmouth College. I graduated in 1989 with a major in History. Literally not knowing what to do next, I enrolled in a Master’s Degree program in Rhetoric and Communication Studies at the University of Virginia. After always avoiding involvement in disability issues, I ended up doing my Master’s Thesis comparing depictions of disability in television and movies.

During the summer between my two years at UVA, I did an internship at the North Country Center for Independence, a Center for Independent Living in Plattsburgh, which had started about a year before. Finding a disability organization that wasn’t begging for medical research funds with sad pictures of disabled kids was a revelation to me. I stuck with the Center, and the Center eventually stuck with me, as I became the Executive Director in 1998. I continued in that position until I stepped down in 2012. I still do some work with the good people at the North Country Center for Independence, doing some consultant grant-writing. But, I needed a real rest, and I also wanted to explore disability issues in a different way.

The Disability Thinking Blog and Disability.TV Podcast are the results.

Disabilities

I have Arthrogryposis.

This condition can have different causes and an assortment of affects. For me, Arthrogryposis manifests itself in:
  • Muscle weakness and stiff, less flexible joints.
  • Short stature. I am 4’1” tall.
  • Significant spine curvatures, both front to back and side to side.
  • Reduced lung capacity caused by the spine curvatures.
  • My type of Arthrogryposis is genetic, which is one of the rarer kinds.
You can read more details about my disability here.

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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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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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.

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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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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