Tuesday, July 21, 2015

The President Gets It



First of all, make sure to move the slider over to just before the 1 hour mark, because up until then it’s all title screen. Also, don’t skip the introduction, because it’s amazing. It’s inspiring without being saccharine.

President Obama does seem to understand the fundamental concept of the ADA and of the disability rights movement. The story about his father-in-law is on point, admiring his perseverance, but pivoting to how much easier life would have been for him if the ADA had been law back then. As the young woman introducing the President noted, it’s not magic. It’s not even really about character. It’s about accessibility, accommodation, and equal opportunity.

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Monday, July 20, 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.”

Emily Ladau, The Disability Dialog - July 16, 2015

Activists are admired in the abstract, but the truth is that very few manage to be consistently liked. It’s one of the few real downsides to being an activist … on any topic, but maybe especially on disability issues. By definition, activists find fault with others. In the disability sphere, they typically find fault with people and institutions that mean well, or at least think they mean well. Plus, we have to find rather obscure, nit-picky faults that few others even see, but which are in fact hugely important. This is one of the reasons why I’m a much better thinker than I am an activist, and I definitely get where Emily is coming from here.

Alice Wong, Disability Visibility Project - July 15, 2015

There is so much more to do to make life better for Americans with disabilities, and Alice Wong gives a nice, brief, frustrated rundown of just three.

Stephen Hobbs, The Gazette - July 20, 2015

This is a stunningly good, in-depth, intelligent investigation into how the ADA’s local government and accessibility provisions get ignored in some communities. It digs into multiple failures … governments that never did a decent Self-Evaluation or Transition Plan, local code officials who claim they can’t enforce accessibility standards because of legal technicalities, and businesses that fall back on the assumption that if there aren’t any complaints, it must be OK. The only thing missing from where is sit is to ask what, if anything, people with disabilities and disability rights organizations in this area of Colorado tried to do over the last 25 years to deal with these issues, most of which could have been easily solved long ago. I think it’s one of the least discussed weaknesses in ADA implementation … the lack of a coherent, agreed upon and effective strategy by the disability rights movement.

It kind puts the Alice Wong and Emily Ladau’s discussions of disability activism into perspective. The mix of anger and ambivalence may be both a cause, and eventually another effect of situations like this one in Colorado. More about this later, maybe ...

Sally Gainsbury, Financial Times - July 19, 2015

I have been trying to follow and understand what has been happening to disability benefits in the United Kingdom. It’s confusing. On the one hand, the UK seems to have a somewhat simpler system of support benefits than we have in the U.S. However, it’s hard to tell from the names of programs just what they do and what each of them is for. This article finally explains the Independent Living Fund in a way that I understand. It seems like it was an experiment in giving people direct cash payments instead of regulated, designed programs, something I would like to see more of here in the U.S. Cash allows disabled people to buy whatever they need, instead of having to conform themselves to whatever some program directors want them to do. The problem is that cash benefits are also simpler and maybe easier to cut. It’s just a number, that’s all. And if “everyone” is tightening their belts, why should disabled people be exempt? I suspect that one problem is that most UK voters have no real idea what those benefits mean to disabled people, in practical, day to day terms. Anyway, I feel like watching what happens in the UK might serve as some valuable warnings for us here in the U.S.

Dylan Matthews, Vox.com - July 18. 2015

I’m not sure why I am including this article on my Weekly Reading List. I like Tig Notaro as a comedian, and the story of her multiple life crises, culminating with breast cancer, and the incredible standup routine she did about, is compelling. But it’s not really about disability. I watched the Netflix documentary, though, and came away with two thoughts that are related to disability. First, I wasn’t as emotionally engaged or impressed as I think I was supposed to be. Second, I still don’t know how Notaro actually feels about being considered not just entertaining and funny … which is what  comedians want to be … but “inspiring.” The film seems to take for granted that her story is especially inspiring, and in some way unprecedented. Maybe that’s the problem. As a disabled person, I know that it isn’t. Not to take anything away from her, but what Tig Notaro went through is rare, but not unheard of. I recommend you listen to the pivotal standup show, and watch the film. They are both fun and interesting, but I bet that if you are disabled, you will also find yourself feeling a little ambivalent at times.

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Saturday, July 18, 2015

Time For A New Addition To The ADA

Take Action written in red, informal capital letters
American Disabled for Attendant Programs Today, (ADAPT)

The Community Integration Act looks like a good candidate to be the next big legislative goal for the disability rights movement. It might even be the biggest deal since the Americans with Disabilities Act, which is appropriate since it’s being presented as a 6th section of the ADA itself. It would add much bigger teeth and operational specifics to the Supreme Court’s 1999 Olmsted decision, which was an interpretation of the ADA.

The Community Integration Act would make every state:
"... provide community-based services first, and offer home and community based services to people currently in institutions as a civil right. CIA requires states and insurance providers that pay for long-term services and supports to make real and meaningful changes that support the right of people with disabilities to live in freedom."
You can read all about it at the link above, but the premise is fairly simple. The Community Integration Act would strengthen the principle that people with disabilities who need “nursing home level” of support services have the right to get those at home. They wouldn't have to move into a nursing home or other “care facility” simply because they can’t get enough hours of home care … or because they don’t want their family to spend hours every day supplementing their care ... or because their state has decided not to fund more than X number of hours per day of home care ... or because a doctor or nurse decides they aren’t safe where they are for some reason. It would be as close as we are ever likely to get to an absolute right for every disabled person, no matter how severe their disability, to live in their own place, if that’s what they want. Disabled people would no longer live in institutions "because that’s all there is."

A new version of the bill hasn’t been introduced in Congress yet. The disability advocacy group ADAPT says that Sen. Chuck Schumer is interested in supporting the bill, but “needs a little push."

Click here to Take Action ... Urge Sen. Schumer to introduce the Community Integration Act before July 23, 2015.
I am sure there are a thousand details and questions to flesh out. How will the Community Integration Act apply to people with developmental disabilities? Would any additional funding be provided? How, exactly, would the affordable housing part of the bill work?

Whatever the answers to these and scores of other questions, I really think this is a great start at finally slaying dragon … putting and end all unwanted institutionalization. Let’s get started.

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Friday, July 17, 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 31, 2015.

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Thursday, July 16, 2015

Throwback Thursday

Two years ago in Disability Thinking: Remembering The Pakleds.

I recently re-watched "Samaritan Snare.”

Ooof, it’s pretty awful. I think the writers meant well. I think they were trying to make some kind of bland point about underestimating people you assume are weak or incapable. But the portrayal is so insulting that any good is undone. Ultimately, you have a fictional alien species transparently crafted to display stereotypes of cognitive impairment. You have lines clearly intended to be mildly comical. You have our good Starfleet officers responding with a veneer of patience, just barely hiding irritation at having to deal with these obviously stupid humanoids. Hardee har, har! You have to work awfully hard to pull a positive message out of all that. Just check out the comments to the video below.

The episode is worth watching though, if only to be reminded that good intentions don’t guarantee good disability depictions.



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Wednesday, July 15, 2015

#DisabilityStories

Erin Blasco - July 14, 2015

Blue box that says “#DisabilityStories July 15, 20150” with a pointing hand symbol.

I will be spending most of the day dipping in and out of this huge Twitter event, marking the 25th Anniversary of the Americans with Disabilities Act. It’s organized by the National Museum of American History. Click the link above for a good summary of what it’s all about and how to participate. Click here to see a schedule for the day.

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Tuesday, July 14, 2015

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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Monday, July 13, 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.”

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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