Friday, July 31, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
Are you ready for another 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! Please also share this with others. It's a good way to build our community and give exposure to new disability bloggers.

This Link-Up will close at Midnight Eastern on Sunday. Look for the next regular Disability Blogger Link-Up starting Friday, August 14, 2015.

Thursday, July 30, 2015

Throwback Thursday

Illustration of the time machine from the film "Time Machine"
Two years ago in Disability Thinking:

A Worthwhile Compromise? … To be honest, I don’t know what happened to this proposal about sheltered workshops and sub-minimum wage.

Why Have I Never Seen This Before? … I reposted the Capitol Crawl video this weekend, to mark the 25th Anniversary of the ADA.

One year ago in Disability Thinking:

"Exile" of “Wrong” … About adaptive furniture design, and an interesting way to describe the exclusion of inaccessible design.

Welcome Ramps! … About a line of compact portable ramps.


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Wednesday, July 29, 2015

Old Video, Fresh Ideas

22 years in Independent Living and I never saw this video about Ed Roberts until yesterday. There’s nothing in it I didn’t know from other sources, but I really feel like I missed out not seeing this much earlier in my Independent Living career.

The video does have a bit of a corporate instructional film feel, but focus on the words, which are as relevant today as they were in the early ‘90s. In fact, I am amazed at how current the content really is. Just update the technology from a “word board” to an iPad, make the music a little more energetic, (or just get rid of it entirely), shoot it in high-res digital, and this could be made today.
Sadly, we don’t have Ed Roberts anymore. He died in 1995. But, there are other people still living who share Ed Roberts’ philosophy and commitment. You might find them working at your nearest Center for Independent Living. If you want to understand what Centers for Independent Living are and what they are supposed to be, this video is an excellent place to start.


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Shared Abilities Article

Shared Abilities logo. Abstract illustration of a person holding both hands up in the air.
Shared Abilities just posted what I hope will be a series of items where parents of kids with disabilities “Ask Andrew” questions about what it is like to grow up from being a disabled child into a disabled adult. Obviously, I have mainly my own experience to draw from, and it’s not like everything went exactly the way it’s supposed to for me. But I figure the failures and shortcomings taught me just as much as the victories.


Tuesday, July 28, 2015

Keep Your Eyes On The UK

Photo of a 20 dollar bill being cut in half with scissors
There’s probably going to be some kind of engineered showdown over funding Social Security Disability here in the United States. Disability activists are going to be pulled in a few different directions. Should we join the effort to “reform” the program and risk validating benefit cuts and narrowing eligibility? Or, should we line up to defend the program as it is, and miss the opportunity to reduce work disincentives and make other improvements we’d actually like to see?

Before we get too far down the road, we should pay careful attention to what’s been happening with “welfare” cuts in the UK, including cuts specifically affecting disabled people:
"One thing the welfare bill accomplishes is to put people who have failed a fitness to work test on to the same payment as people who have passed it, like some tent-revivalist preacher tipping sinners out of wheelchairs and screaming “Walk!” Who would have thought that electing people who hate the welfare state to run our welfare state could go so badly? In practical terms this change means people with things such as MS and Parkinson’s will lose £30 a week. That extra £30 a week was there because, sometimes, chronically ill people’s bodies don’t work so well and they might have to get a bus or a cab or pay the babysitter to stay for an extra hour so they can get to and from the latest humiliation from the Department for Work and Pensions."
This is from an angry article in The Guardian about the Labour Party, the UK’s main left-of-center party that historically has fought for the welfare state and defended the UK’s poor and working class. It’s roughly … and I mean very roughly … equivalent to the US’s Democratic Party. Yet, apparently they are pretty much going along with the Conservative Government’s austerity policies, which include a two-faced stance on disability policy.

Publicly, they use the language of empowerment and confidence in disabled peoples’ ability to work and be self-sufficient, while policy-wise they cut benefits and make everyone who gets benefits prove to poorly-trained bureaucrats that they really do need their government support. Meanwhile, they nudge and wink and tisk-tisk about “welfare scroungers."

It sounds familiar. The same kind of thing could easily happen here, if we aren’t very careful.

By the way, £30 a week, £120 per month, is equivalent to almost almost $47 per week, $187 per month. That's more than the cost of a few lattes.


Monday, July 27, 2015

I Was So Young ...

This morning, a disability activist here in Plattsburgh emailed a bunch of people this Op Ed piece I wrote for the Plattsburgh Press-Republican newspaper about the Americans with Disabilities Act, just before it was signed into law on July 26, 1990.

When I saw what it was, I had a moment of dread. I couldn’t remember writing it, and I wondered if it would be embarrassing. In fact, it’s not bad.

On thing I noticed is that there are actually very few people making the libertarian argument against the ADA anymore. Apart from a few think-tank theorists, hardly anyone uses the ADA as an example of government overreach anymore. That’s a good thing, but also a bad thing. It’s good that we mostly don’t have to deal with ideological opposition anymore. But it’s also disturbing because it is further evidence that most people don’t see the government as an active participant … a cheerleader maybe, but nothing anyone feels afraid of anymore.

Any residual venom seems to be reserved for a few lawyers, and for disability activists.

Anyway, enjoy this pre-ADA, pre-Web, pre-Blog, pre-Disability Thinking snapshot from the archives.


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Sunday, July 26, 2015

Weekly Reading List - Happy Birthday ADA Edition

This week I am posting links to articles I have collected the 25th Anniversary of the Americans with Disabilities Act. The “mainstream” press rarely covers disability issues in any sort of depth. That’s why I decided to stick with the more journalistic pieces, even though most of what I have read about the ADA this week was on personal disability blogs and social media sites.

Joseph P. Shapiro, Washington Post - March 29, 1988

This is a good place to start … an article on the ADA from 1988, just before the first bill was introduced for the first time.

Samantha Michaels, Mother Jones - July 25, 2015

It’s all about the video above, which I have posted before on this blog. As the man in the video says, there’s a fine line between empowerment and pity. I think there are two key factors. First, it seems like the capitol crawlers wanted to do it, and came up with the idea themselves. Second, they did it for their community, not for themselves.

Robert L. Burgdorf Jr., Washington Post - July 24, 2015

This is the kind of history I love, and I’m amazed at how little I knew about the origins of the ADA. But to me, this is the most important sentence:
“After conducting consumer forums around the country, NCD concluded that discrimination was the biggest problem facing those with disabilities."
It’s easy to forget what a radical conclusion that was at the time. For many today, it’s still a surprise and a revelation that disability discrimination is, in fact, worse than disability itself.
Joseph Shapiro, - July 24, 2015

News stories about ADA lawsuits usually make them sound either vaguely sleazy or unrealistic and selfish. This article shows how lawsuits are sometimes necessary to move progress along, and ensure justice for individuals who need it.

David Crary, Fox Business / Associated Press - July 25, 2015

This is a very good overview of the ADA’s history and effect, taking into account both praise and criticism.

Lorraine Mirabella, Baltimore Sun - July 25, 2015

The Title I employment provisions may be the least successful part of the ADA, if success means a major shift towards employment for all people with disabilities. But I don’t think the ADA was really designed to deal with macro-level employment gaps. It’s better suited to dealing with very specific individual employment matters. And as a civil rights law, the ADA has nothing at all to do with preparing people for jobs. It removed some barriers to entry, but it was never meant to push people through.

Ananya Bhattacharya and Heather Long, CNN Money - July 26, 2015

Reading about the blind man at the start of this article, I wonder for the millionth time why there aren’t more disabled people who file complaints and sue under the ADA when faced with such straightforward discrimination and lack of accessibility. But it takes resources to pursue complaints and lawsuits, neither of which are likely to make the plaintiff more employable. Especially with employment discrimination, there’s something missing in the ADA, but I don’t know how it could be fixed.

Pam Fessler, - July 23, 2015

Did the ADA make it harder for disabled people get jobs? It’s an interesting thought that makes some kind of sense, but I’m not convinced the law has been a net negative. After reading this article, I have the feeling that for many of us, the problem is that we are distracted by so many little inaccessibilities, discriminations, and disincentives before we even get to the workplace, and I think employers sense that. They might not think, “I don’t want to hire a disabled person,” but they will think, “This person’s life is too complicated, how would she stay focused on the job?” If the rest of our lives were smoother and more secure, I think we’d be more convincing in the job market.

Petula Dvorak, Washington Post - July 20, 2015

I agree with Dot Nary’s strategy of letting smaller businesses go with some education, while saving really aggressive advocacy for the big companies that “should know better.” In rural towns like mine, though, that might not be enough. The bigger companies are all on the outskirts of town, and are mostly accessible by now. It’s just that a lot of disabled people can’t get there. The businesses they can reach tend to be smaller, in those old downtown buildings that ALL have steps up and narrow doorways. Eventually, something has to be done about them, too. And after 25 years, “eventually” is, arguably, now.


I have to say I’m disappointed that neither of my two favorite news websites, and have posted anything about the ADA anniversary. I wonder if these were conscious editorial decisions, or just carelessness.


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Friday, July 24, 2015


I’m going to take a couple of days off from blogging. I’ll be back Sunday, July 26, 2015 with a collection of my favorite articles about the 25th Anniversary of the Americans with Disabilities Act.


Thursday, July 23, 2015

Throwback Thursday

Illustration of the time machine from the film "Time Machine"
One year ago in Disability Thinking: Digging Up Disability History. Skeletal evidence of prehistoric compassion, and possibly equality of disabled people.


Wednesday, July 22, 2015

9 Ways America Would Be Different Without The ADA

#AmericaWithoutADA - How would America be different if the Americans with Disabilities Act had never passed?
It is hard to get a handle on what the Americans with Disabilities Act has accomplished and meant to disabled Americans for the last 25 years. As a disabled person myself, I have been trying to think of a way to sum up the ADA’s importance.

Pretty much everyone in the disability community celebrates the ADA, but it’s a very glass half full / glass half empty thing for us. How each of us evaluates the ADA says as much about our own personalities and individual experiences than about the law itself. Unfortunately there aren’t many objective measures of the ADA's success or failure. How do we assess the value of the ADA? Has it really made much of a difference?

Maybe we should ask, “What would America be like today, if the ADA had not become law in 1990?"

Set aside the very strong possibility that an ADA of some kind would have passed eventually, in 1995 or maybe 2000. Let’s suppose instead that after failing to pass in 1990, the whole idea of a civil rights law to cover disabled Americans falls out of favor entirely.

Here are 9 ways America would be different today, without the ADA:

1. Most buildings of all kinds built after 1992 would have unnecessary barriers like narrow doorways and steps at entrances. Facilities and features for disabled people would be rare, separate, hidden from view, and hard to find.

2. Disabled people would only venture out into the community or travel for bare essentials. Most recreational places like restaurants, theaters, stadiums, hotels and motels would lack accessibility restrooms, restricting disabled people to only the briefest visits.

3. Sidewalk curb ramps would be rare, and wheelchair users riding in the street would be a major local irritant issue, similar to cars vs. bikes.

4. A handful of colleges and universities would be known for their accessibility and accommodation practices, and disabled people would have to go to them or not go to college at all. A few very expensive private colleges would probably be founded just for students with specific kinds of disabilities.

5. Virtually all disability activism would consist of groups representing specific disabilities lobbying for very targeted benefits and privileges, plus individuals raising money to pay for personal needs. The concept of “disability rights” would be viewed abstractly, discussed mainly by theorists and academics but unfamiliar to most disabled people.

6. There would be huge opportunity and participation gaps between disabled people with some wealth, who could pay for their own accommodations in workplaces and other areas, and those too poor to do so.

7. Far fewer disabled people would even attempt to get jobs, since they would be told quite plainly that they are not being hired because of their disabilities. Mentally ill people would find it almost impossible to get jobs of any kind, as employers would regularly and legally probe into whether applicants had any mental health histories.

8. Elderly people would move into nursing homes and similar facilities sooner and in much higher numbers, due in part to less accessible communities, and also because of the lack of any meaningful commitment to the principals of “most integrated setting."

9. Very few buses trains, or subways would be wheelchair accessible, mostly in the biggest cities and on a handful of the busiest routes. Accessible, affordable public transportation in rural areas would not exist, apart from a few vans operated irregularly by disability non-profits, nursing homes, and churches.

What do you think would be different today without the ADA? Join a Twitter hashtag … #AmericaWithoutADA


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.


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, - 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.


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.


Wednesday, July 15, 2015


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.


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.


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.


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: 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.


Saturday, July 11, 2015

Talk To Your Doctor

cartoon icons of a doctor and a patient talking to one another
Sarah Kliff, - 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.