It's Refreshing

Illustration of a white 3-d stick figure sitting in a wheelchair at the bottom of a flight of stairs
Jeffrey Pfeffer, Fortune - July 14, 2015

Here we have a rare and refreshing thing. A business expert writes an article advocating stronger enforcement of disability rights laws, and it is published on a business magazine’s website.

What’s more, the writer, a non-disabled person who gained his initial insight through a temporary impairment, makes a stronger, simpler, more insistent case for disability rights laws than a lot of disability journalists, bloggers, and activists. Well, better than me anyway. I tend to hedge my advocacy posts with all sorts of caveats and acknowledgements of opposing views, something I think a lot of us are conditioned to do.

We have to keep reassuring the “average reader” that we are rational and realistic. We know our issues rarely make it to the front burner. We know “most people” don’t really understand, so they can’t be blamed. We have learned to live with unnecessary injustice. We’re not happy about it, but we’re not surprised.

Maybe that’s why laypeople and newcomers to disability issues can sometimes speak with a clearer, louder voice. What they lack in authority they make up for in fervor and sheer astonishment. They see, more clearly and emotionally that than some veterans of the struggle, that disability discrimination and inaccessibility at this point isn't just wrong, it is surprising, and it's bizarre.

It doesn't happen that often, but when a non-disabled journalist does a disability story and instead of crying tears of pity, instead asks, basically, "Why the hell are things still so shitty for these people?"... well, it's refreshing.

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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.”

Associated Press, New York Times - July 12, 2015

“Disability Pride” parades seem like such a natural that I am surprised that they are only now starting to happen. One of the hardest things about having a disability, for so many of us, is that lingering feeling of not wanting to be seen. Having a parade where we literally put ourselves on display, but together, on our own terms, with pride and joy, not angling for sympathy, has got to be a transformative experience for a lot of disabled people.

Andrew Imparato, Disability Blog - July 2, 2015

Andrew Imparato calls for people who still hide or downplay “non apparent” disabilities to be “out” about them and embrace them. He makes an excellent argument for this approach to disability. It’s good for he individual soul, of course, but being open and clear about our disabilities also helps reduce the stigma of all disabilities, including those that can’t be hidden or easily ignored.

By the way, do read the comments. If you are like me, you’ll be discouraged and baffled at first. The post is so positive and important, and yet so many of the comments are sad, angry, and very personal … deep in the intricate weeds of very individual problems. But it’s important to hear these stories, too, even if they don’t mesh well with our deep thoughts about “what it means” to be disabled.

Tiffiny Carlson, The Mobility Resource - August 2, 2013

Okay, it’s an old article, and and the 10 points are all things we have heard and read before in some fashion. But they are all spot-on, for kids, and I think for non-disabled people of all ages. Some aspects of disability awareness are really pretty simple, no matter how hard we try to overthink them!

Lori Plyler, The Mighty - July 8, 2015

We need more blog posts and articles like this, written by parents who have disabilities themselves. I especially appreciated how an expression of love and acceptance from her son helped her process very old wounds from childhood teasing and bullying. While it’s certainly possible to live too much in our past traumas, in general, I think more of us with disabilities whistle past them without really dealing with them, and I don’t think that’s such a good idea in the long run. Anyway, it’s a lovely article. I must say, too, that although I generally resist any kind of “inspirational” stuff to do with disabilities, The Mighty is one of the few publications that strikes a nice balance and manages to do inspiration without being syrupy.

Arthur Delaney, The Huffington Post - July 10, 2015

There is a lot to unpack in this article on the coming funding shortfall for Social Security Disability. That’s because the issues are legitimately complex and shot through with ideological biases from all sides. Paul Ryan is correct that there are disabled people who want to work, who can be limited by the structural disincentives of Social Security. However, that’s almost completely unrelated to the funding problem. On the other side of the coin, we have an interesting argument that while many disabled people do want to work, the number who might realistically succeed in the workplace, even without disincentives, may be much smaller than we disability activists like to admit. I think the key is to keep the long-term issue of reform separate from the short-term funding problem, but I don’t see it working out that way. I fear we will go through what the UK has gone through over the last several years … “reforms” that look good and optimistic on paper, but are really motivated by a combination of cheapness and an ideological opposition to social spending, period.

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Podcast Update



Disability.TV A podcast about disability on television
No Seinfeld for you! Not today anyway.

I originally planned to post a Disability.TV Podcast episode on Seinfeld today. Instead, I found myself rethinking how to do the podcast going forward. The upshot is that I am making a couple of adjustments based on feedback received so far in the Visitor Survey. If you haven’t yet taken the survey, please do. It will stay open indefinitely.

1. Shorter Episodes

Starting Monday, August 3, podcasts will come out on the first and third Monday of each month. Each episode will be about half an hour long, sometimes a standalone episode, sometimes half a two-part installment on a single TV show or topic. In addition to cutting longer episodes in half and posting them two weeks apart, I will also work on being more concise overall.

2. Transcripts

Every episode will include a complete written transcript. It takes about a week to get transcripts done, so I will record and each month's episodes first, order the transcripts, and post the episodes later when the transcripts are done. Transcripts are essential to make podcasts accessible to deaf and hearing impaired people, and may also be helpful for others as well.

Here is the tentative schedule for the next few months:

August, 2015


Aug 3 - Part One
Aug 17 - Part Two

September, 2015


Sep 7 - Part One
Sep 21 - Part Two

October, 2015


Oct 5 - Part One
Oct 19 - Part Two

November, 2015


Nov 2 - Part One
Nov 16 - Part Two

December, 2015

Dec 7 - Autistic Characters
Dec 21 - Disability Tropes

January, 2016


Jan 4 - Part One
Jan 18 - Part Two

If you would like to be a guest for any of these topics, please let me know. Send me an email at: apulrang@icloud.com. You can also contact me through Twitter: @AndrewPulrang or Facebook. I could also use some help paying for transcripts and other technical improvements. Check out the Support page to see how you can contribute.

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Talk To Your Doctor

cartoon icons of a doctor and a patient talking to one another
Sarah Kliff, Vox.com - July 8, 2015.

I don’t have a problem with Medicare paying doctors to have “end of life" consultations with their patients. All that talk about “death panels” a few years ago was cynical nonsense, meant to stoke peoples’ fears in order to defeat the Affordable Care Act. I don’t believe there’s a plot to hoodwink people into agreeing to euthanasia or anything like it.

That said, Sarah Kliff is onto something when she writes about peoples’ fear of losing control to professionals and bureaucracies. It’s a real fear, exaggerated, but based on real-life experiences people do sometimes have with merciless insurance companies and dismissive or condescending doctors.

Many disabled people have a related, but different concern. It may be hard for non-disabled people to believe, but I think all of us with disabilities wonder from time to time whether some day our disability-related needs will finally be too much for our coworkers and supervisors, our schools, our families and friends. Long term care is widely understood to be a family problem, a stressor that breaks marriages and causes burnout, for the caregivers. Medical technologies like ventilators and wheelchairs are still spoken of as traps and millstones, not life-savers and mobility aids. Again and again we are told, indirectly but loud and clear, that a significant number of our fellow citizens bitterly resent their tax dollars paying for any of our care and maintenance, which is assumed to be some kind of major risk to public solvency. The constituency of people who argue for legalizing suicide huge, based on the assumption that ongoing life with disabilities is intolerable and any sane person would rather be “allowed” to die. It doesn’t help when experts who one minute are all concerned about peoples’ wishes being known and respected, can’t help themselves from noting how much it costs to keep people alive “on machines."

On top of that, I think there is a legitimate concern that medical professionals tend to view life with disabilities quite negatively, in some cases worse than less informed laymen. To many doctors, disability means life with everyday care needs that will never result in a “complete recovery.” A reasonably good outcome for us may, for many doctors, seem like a professional failure.

The crux of the problem is that too many people confuse disability with this vaguely defined period known as “end of life.” They are not always the same thing.

I’m not worried about people who have lived with disabilities for a long time. We know the score, and we can speak for ourselves in no uncertain terms about what “quality of life” means to us, regardless of anyone else’s perceptions. What worries me is people new to disability, and people not disabled yet, trying to think intelligently about what they would want if and when it happens to them. What will they understand about living with disabilities if they only hear about it from a doctor?

All that can be addressed, however, so that “end of life conversations” can be valuable and empowering. Really, disabled people should push harder than anyone for these explicit, very specific conversations. If we want our lives to be valued, if we want to live no matter what the cost or how scary and icky we look to others, then should use these conversations to speak up and say so, very specifically, individually, to our own doctors.

Which reminds me to stop procrastinating and review my Health Care Proxy and Advance Directives … and to have a conversation about these things with my doctor.

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ADA Anniversary Twitter Event

Logo in black, blue, and red reading ADA 25 - Americans with Disabilities Act - 1990-2015
Ellen Blasco, National Museum of American History - July 8, 2015

As I post this, we are only days away from the 25th Anniversary of the Americans with Disabilities Act. If you have disabilities, if you are related to someone with a disability, or if you are just interested in disability issues and culture, I encourage you to join in a day of Twitter discussion about the ADA, hosted by the National Museum of American History, part of the Smithsonian Institution.

I am still working on a complete ADA Anniversary post, with useful information about the law, memories of when it first passed, and an assessment of how effective, or not, it has been. For now, I will just say that I feel like the Americans with Disabilities Act has had more impact as a moral, almost spiritual victory for the disability community, than as an actual civil rights law.

What do you think? What does the ADA mean to you? What are its strengths and weaknesses? How much of a difference has it made in the lives of Americans with Disabilities?

It looks like the Twitter chats happening all day on July 15th will be a great place to talk about it and find out what others think.

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Digging Into The Employment Gap

Picture of a 3-d bar graph, being viewed through a magnifying glass
How much worse is unemployment for people with disabilities, compared with non-disabled people? While working on the Disability.TV Podcast episode on disability in Seinfeld, I came across a couple of bits where the comedy depends on the idea that disabled people have all sorts of perks and advantages in the workplace.

I get what that’s referring to. People with disabilities do have some specified legal rights in employment that non-disabled people don’t have, and "hiring the disabled" is widely understood to be a good thing to do. I also know that these advantages don’t amount to much, and that disabled people are in fact massively disadvantaged in the job market, at least if employment rates are any indication.

The U.S. Bureau of Labor Statistics now reports monthly on employment of people with disabilities nation-wide. Here is the June, 2015 report:
Reduced-size picture of US Bureau of Labor Statistics June 2015 report, accessible in full through link above
I circled eight items, each of them a percentage, because I think they are the easiest to understand and most meaningful measurements and comparisons. For one thing, they include only "working-age people" … age 16-64. They also take in two other relevant comparisons: Disable vs. Non-Disabled and Male vs. Female.

Finally, the report highlights two main ways of measuring employment itself: Participation Rate and Unemployment Rate.

The Participation Rate is the percentage of the given population that is either working or looking for work. It doesn’t count retired people or people who are unemployed not actively looking for a job.

The Unemployment Rate is the percent of people in the Participation Rate measure who are not employed. That is, it’s the percentage of people actively looking for work who haven’t found it. Put another way it’s the gap between how many people want and intend to work, and the number who are actually working.

With all of that said, here are some tentative, non-expert conclusions:

- The Participation Rates for disabled men and women are a lot lower than for men and women without disabilities. A far higher percentage of disabled people are neither working nor looking for work than the percent of non-disabled people. 28-34 percent of disabled are working or looking for jobs, while 70-83 percent of non-disabled people are working or looking for jobs. There are probably many reasons for this difference, including self-perception, societal expectations, work disincentives, and the immediate barriers imposed by peoples’ actual disabilities.

- The Unemployment Rate for disabled people is also quite a bit higher than for non-disabled people ... 11 to almost 9 percent for disabled, and only a little over 5 percent for non-disabled people.

- This means that, controlling for people not participating at all in the job market … leaving out people who consider themselves “too disabled” to work … we are still left with a large employment gap. If we go further, and note that there would probably be a lot more disabled people looking for jobs if they felt any hope of finding one that would hire them, then the gap would be much, much higher.

- It is worth noting that the Participation Rate has been growing and the Unemployment Rate dropping for disabled people over the last several months. But we’re talking about improvements in tenths of a percent, nothing to indicate a revolution or some massively successful new policy or approach, at least not yet.

Overall it’s hard to find bright spots or some hidden advantage of being disabled, when only about a quarter of working age disabled people are working, while over three quarters of working age non-disabled people are employed. The numbers certainly suggest that George Constanza faking a disability to get a job is not just funny, it’s nonsense.

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Podcast Preview: Seinfeld

This week I am working on the next Disability.TV Podcast, which will be about disability on the best sitcom in television history, Seinfeld. I thought this would be a quick, breezy, impressionistic episode. After all, none of Seinfeld’s regular characters have disabilities, and the show itself isn’t about disability. As it turns out, there’s actually a lot of disability stuff to re-watch and talk about.

I have picked out eight storylines that focus on disabled characters or disability themes. None of them are what I would call “positive” depictions of disability. Yet, they are all interesting and worth watching, because in most of them there are interesting ideas to chew over about how non-disabled people view disabled people and disability issues.

The videos below are from three of the disability stories that I will explore in the podcast. Look for the episode here on Saturday.







Er, yeah, there's sexism, too.

Every episode of Seinfeld is now available on Hulu.com. I also want to thank Vinnie and Matt, the hosts of Seincast: A Seinfeld Podcast for their thoughts and advice.

You can also subscribe to the Disability.TV Podcast, and leave ratings and comments, at iTunes or Stitcher. Please consider supporting the podcast and this blog by becoming a Patreon sponsor. Any way you can help, I appreciate your support.

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