Thursday, July 31, 2014

Video Of The Day: Mannequins 2, JCP Edition

Visit for breaking news, world news, and news about the economy
Jane Weaver, Today, NBC - July 15, 2014

I am glad to see this, but I am surprised they didn’t mention the similar project done in Zurich, Switzerland last Fall. The video for that made me cry for real, not out of pity, but because of a strong feeling of identification with the participants. One thing I like about this project is that they don't focus on disability per se, but on differences ... including weight and height.

"20 States On Wheels" Update

I decided to check in on the 20 States On Wheels project … four college students, one of whom uses a wheelchair, traveling from San Francisco to Boston and blogging about the accessibility they find, or don’t find, along the way. Today they are in Denver!

It looks like they have found a fair amount of full accessibility so far, with the biggest problems being when promised accessibility and accommodations fail to materialize. This seems most notable with car rental and hotel reservations. Restaurants and tourist attractions seem to be mostly accessible and accommodating.

That all sounds familiar to me, and highlights one of the best aspects of architectural accessibility. For the most part, a physically accessible feature can't disappoint. People frequently do, as do their policies and practices.

Browse the blog. The group has posted lots of great photos, along with descriptions of their accessibility experiences.

Wednesday, July 30, 2014

Welcome Ramps!

Doorway ramp styled like a welcome mat

It’s accessibility day, I guess. These ramp / welcome mat things go well with the article on cardboard furniture.

"Exile" of "Wrong"

Jim Dwyer, The New York Times - July 29, 2014

It’s the phrase, “the Exile of Wrong Furniture” that hooked me. I can think of so many variations on it that would describe living with disabilities, in a world of full of barriers. The Exile of Wrong Entrances … The Exile of Wrong Sidewalks. Fantastic.

The subject is terrific, too … using cardboard to make custom furniture for disabled kids. It should work for disabled adults as well. I could sketch out a piece or two that would help me out a lot. Like maybe a computer desk, and a properly proportioned chair.

Tuesday, July 29, 2014

Coming Soon ... "Disability.TV"

Photo of old tv set with four disability symbols on the screen - Disability.TV - disability
I have been toying with the idea of starting a podcast on TV depictions of disability for quite some time, but I think I’ve finally reached the point where a vague idea is ready to turn into reality. If all goes well, I’ll have an introductory episode of “Disability.TV” out on August 1st. I will probably post it initially on, but eventually it should be added to iTunes as well, so people can download episodes to their computers and mobile devices.

Each episode will focus on a single TV show and its disabled characters. My main goal throughout will be to answer the question, “What do we want in TV depictions of disability?” In the process, I hope listers will enjoy a tour of past, present, and even future TV shows featuring disabled characters and themes. To get a good head start, here is a tentative list of episode topics: 

Ironside - Original Series - Chief Robert Ironside

Ironside - New Series - Detective Robert Ironside

The Michael J. Fox Show / Growing Up Fisher - Mike Henry / Mel Fisher

Friday Night Lights - Jason Street

Game Of Thrones - Tyrion Lannister

Game Of Thrones - Jaimie Lannister, Bran Stark, and Hodor

Glee - Artie Abrams, Becky Jackson

Big Bang Theory - Sheldon Cooper

Parenthood - Max Braverman

Red Band Society - (New Fall Show)

Breaking Bad - Walter Jr. “Flynn” White

Star Trek - The Menagerie 1 & 2 - Captain Christopher Pike

Star Trek: The Next Heneration - Ethics - Lt. Worf

Star Trek: Deep Space 9 - Melora - Ensign Melora Pazlar

American Horror Story - “Freak Show”

ER - Dr. Kerry Weaver

ER - Mental Illness

Downton Abbey - Mr. Bates, Thomas Barrow, Matthew Crawley

The West Wing - President Josiah Bartlett

The West Wing - Joey Lucas

Life Goes On - Corky Sherwood

I think I have everything I need to get started … except for one thing. I need ideas, insights, and most of all, some co-hosts! If you are tuned in to disability issues and popular culture, have a look at this list, and if you see something that interests you, let me know. Hopefully, we can work out the technical side of long-distance podcasting and make these episodes real discussions rather than monologues. Two viewpoints are almost always better than one!

Stay tuned for the first, introductory podcast!

What Are We Arguing About?

white 3-d stick figure of a person pondering a thought, leaning against a red question mark
When you start reading around the disability blogs, as I did a year and a half or so ago, you get the impression that there are some pretty big arguments going on just under the surface of things. People with opposed views on disability topics rarely clash with each other directly, but there are obviously some high-stakes disagreements and misunderstandings sparking a lot of passion. The problem is that the terms of debate are almost never spelled out, and a newcomer to disability culture can become easily confused. What’s it all about?

I don’t want to fan the flames, but it might be useful once in awhile to try to articulate just what it is we are fighting about … or being passive-aggressive about as the case may be.

For example:

- Is disability a complex web of medical, social, and political factors that all affect how people with specific impairments live? Or, is all the social and political stuff a sort of mirage, distracting us from the pain and hardship of unpleasant medical conditions we should be trying to solve? This argument is at its most concentrated when there is a clash between efforts to eliminate certain disabilities entirely, and a view that doing this would be tantamount to genocide. However, a more moderate but similar argument goes on over where people prefer to direct their attention and money … to making life better for disabled people, or to ridding people, and society, of disabilities?

- What is autism? Is it a baffling and often debilitating brain dysfunction that kids and families suffer greatly from? Or, is it a very particular kind of brain and perception difference where autistic people are essentially ok if they’re allowed to be themselves and use their coping mechanisms, but parents and other “neurotypicals” make them miserable by trying to force them to “act normal”? It’s hard to stake out a middle ground here. It feels like one or the other side is not only wrong, but tragically, horrifically wrong. People disagree over the true nature of a few other specific disabilities, but autism seems to be the most divisive.

- Are most intellectually disabled people quite capable and fully self-aware, and just in need of some extra help and guidance to live satisfying lives? Or, are most of them severely impaired and in need of constant, life-long care and supervision? Most people would say some of both, and lots of in-between. But, one side tends to stress a more minimalist, positive view, while the other side focuses more strongly on needs and what they see as serious, insolvable deficits. The two sides seem to be looking at two different groups of people, while speaking as if to encompass them all.

- Are people with substantial care and assistance needs better served in their own homes with visiting nurses and paid personal assistants? Or, do they get better, safer care in specialized care centers like nursing homes and “assisted living facilities”? This argument is inseparable from the question of which model is more financially sustainable. Not to mention … whose needs are paramount, the person with a disability, family, or care providers?

- Which is more crucial to successful life with a disability … positive thinking and good behavior of the disabled person, or accessibility, accommodation, and respect from society, towards the disabled person? How we answer this question seems to depend a lot on which we believe is easier to change … ourselves or society. The answer to that is not obvious, either way.

- Is disability prejudice the result of ignorance or evil, confusion or hostility? Does it make a difference?

If you have read even just a little bit of this blog, and of other blogs by people with disabilities, you should be able to guess how most of us would answer these questions. Yet, they are questions, and the opposite answers are not so easily dismissed, once they are fairly laid out.

I have no grand point here. I just think it’s important that we remind ourselves of what we believe, and of what others believe who disagree with us.

Monday, July 28, 2014

Recommended: Excellent CRPD Information

Andrea Shettle MSW, Rambling Justice - Updated July 22, 2014

This is by far the best thing I have seen so far explaining the UN Convention on the Rights of Persons with Disabilities (CRPD), and providing everything an advocate would need to help push for ratification.

I would also like to give a qualified, cautious endorsement of @FightingCRPD, a Twitter feed satirizing the beliefs that have prevented the CRPD from being ratified. It is satire, right? RIGHT?

The Guaranteed Income Idea

Picture of a hand held palm up with a green dollar sign above it.
Dylan Matthews, - July 23, 2014

I wonder how many disability policy problems would be solved or simplified if every American 18 or over could start each year with, say, $20,000 of guaranteed income? As Dylan Matthews points out, the idea is probably politically infeasible, and for a lot of people morally upsetting, but it’s not economically impossible.

From a disability perspective it would not only give all of us a firm … but not lavish … base to work with. It would also eliminate a lot of the anguish over eligibility we go through to get support. If everyone got a guaranteed income, it wouldn’t matter whether or not we have someone else’s conception of a “qualifying” disability. We might need to prove greater, more specialized need if we needed services in addition to income, but for many of us, that wouldn’t be necessary.


Sunday, July 27, 2014

T-Shirt Of The Day

Top 10 things NEVER to say to a Disability Rights Activist. 1. What’s wrong with you. 2. It’s so great to see you out in public. 3. People like you are such an inspiration … if I were in your situation I’d probably kill myself. 4. Yeah we’re accessible … we only have two steps. 5. I was just parking there for a minute. 6. Wheelchair access is around the back … through the alley … behind the dumpster … just knock and someone will take you through the kitchen. 7. We’re covered by the Grandfather clause (NOT). 8. You can’t bring that dog in here! 9. Can’t he just read lips? 10. Can you drive? Who do you live with?

Recommended: Hashtag & Podcast

Maddie Ruvolo and Emily Ladau, who started a new podcast yesterday, Disabled Girls Talk, also started a great Twitter hashtag: #BecauseOfTheADA. This morning they posted a Storify page showing some of the resulting Tweets.

If you are the Twittering kind, why not keep the hashtag going? Also, be sure to listen to Disabled Girls Talk. In Episode 1, "Generation ADA", Maddie and Emily discuss what it has been like for them to grow up with disabilities in a post-Americans with Disabilities Act world.

Weekly Wrap-Up

Saturday, July 26, 2014

Guest Post at the Disability Visibility Project: The ADA - Three Disappointments, Three Victories

Disability Visibility Project, A community Partnership with StoryCorps @DisVisibility
I am very excited to have a guest blog post on the Americans with Disabilities Act, at the Disability Visibility Project website.

by Andrew Pulrang

Big thanks to Alice Wong, of the Disability Visibility Project for inviting me! I highly recommend following her on Twitter: @SFdirewolf.

ADA 24th Anniversary

24 years ago today, President George H. W. Bush signed the Americans with Disabilities Act into law. Here are some videos to help you celebrate!

Friday, July 25, 2014

"Criptiques" & "Criptionary"

Caitlin Wood, Criptiques - July 23, 2014

There's another great "Criptiques" interview out! Follow the link above to hear Caitlin Wood interview poet, performer, and disability activist Maria Palacios. Someone should really collect writings from all of these amazing people Caitlin is interviewing, into some sort of book. Oh, wait ...

During the interview, Catilin and Maria refer to Maria's book, "Criptionary". I haven't read it yet, but I have read a few sample definitions from the book, and they're hilarious.

If you want to know a little more about the book before you buy, visit the "Criptionary" Facebook Page.

Two Bills To Fight For

picture of a green highlighter pen highlighting the word Advocacy on a page of textThe UN Convention on the Rights of Persons with Disabilities (CRPD):

I regret sounding overly pessimistic about the CRPD the other day. Andrea Shettle, who has been keeping the Internet up to date on the CRPD left a comment that basically encourages everyone to keep the pressure up, and remember all the legislative barriers the disability community has faced and overcome in the past.

Objections to the CRPD are, in fact, ridiculous. It’s mainly a tiny sub-group of voters who hold these beliefs about how it would affect U.S. sovereignty or home schooling. One reason they stick, though, is that the vast majority of Americans aren’t even aware that the CRPD exists. If more people knew what it was, and heard exactly what has kept it from being ratified, they would be disgusted. So, tell your friends! Bloggers, tell your readers!

Meanwhile, you can click here to contact your Senators … especially the ones who are “on the fence” at the moment, or who voted "no" in the past.

The ABLE Act:

I wrote about the ABLE Act for Shared Abilities a few months ago. The bill has been active again this week, so Shared Abilities’ CEO, Julie Steckel, reposted my piece on her Facebook page.

I also recommend reading this more recent article on the ABLE Act,l on the MSNBC website. 

The bill still seems to be promoted mostly as a solution for parents of disabled children, which it is … but that’s not all it is. It is worth remembering some key aspects of the ABLE Act:

- In addition to being tax-free, ABLE Act savings accounts would allow people with disabilities to set aside savings above $2,000, up to $100,000, without losing eligibility for benefits like SSI and Medicaid.

- Savings could only be used for disability-related goals, not everyday living expenses. However, these funds would be more flexible and less restricted than Special Needs Trusts or PASS Plans.

- The law would also allow self-directing adults with disabilities to set up and manage their own accounts, without needing a third-party trustee or manager. They could accept gifts from others to build their accounts, but also deposit some of the money they earn in jobs, which would then not be counted as monthly income, helping preserve benefits eligibility. This would help reduce work “disincentives” … the common situation where people with disabilities hold back on work and promotions because they can’t afford to lose key benefits.

The ABLE Act has broad, bipartisan support in Congress. It looks like it is on a path to being passed in the House and Senate in September. In a situation like that, the most valuable thing for advocates to do is to contact their Senators and Representatives and urge them to keep up the pace. The bill seems unlikely to face opposition, but even a popular bill can fade from apathy.

Call your members of Congress. Don’t let them forget about the ABLE Act!

Thursday, July 24, 2014

Open Thread

I am going to be very busy today with life stuff, so I thought I’d try an Open Thread. This is where a blogger publishes a post without actual content, purely so people can discuss whatever they want in the Comments section of the post. I’d like to keep it disability-related, but obviously that covers a lot of ground, so … what’s on your mind? Add your comments below!

Wednesday, July 23, 2014

More On The CRPD

Anne Laurie, Balloon Juice - July 23, 2014

Here is a mainstream take on the UN Convention on the Rights of Persons with Disabilities. By mainstream I mean not from a disability advocacy group. It is, obviously, from a fairly liberal, Democratic blog. Still, liberal blogs don’t always quite get the point on disability issues, even when they're on the right side. This post doesn’t say much about the disability aspect, but it does, correctly I believe, identify the real problem, which has nothing whatever to do with disability, and everything to do with right-wing, “black helicopter” paranoia. I hate to be pessimistic, but how do you fight that?

Digging Up Disability History

Elizabeth Picciuto, The Daily Beast - July 22, 2014
"The moral arc of the universe may indeed bend toward justice, in disability as in race, gender, and class—but that arc doesn’t flow smoothly: It contains many hills and valleys.”
I have seen several versions of this story about the skeleton of a person with Down Syndrome, dated to the 5th or 6th century A.D. Most of the references present as established fact the idea that because the child was buried the same way, with the same burial rites as others in her clan, it shows that people with Down Syndrome were fully integrated, valued members of their communities, even in the “Dark Ages”. Even though this article acknowledges how little we really know about ancient attitudes towards disabilities from such sparse evidence, I still find this new evidence tantalizing.

book cover of History Of The World, Updated, by J. M. Roberts
A few years ago, one of the first audiobooks I listened to was History Of The World, Updated, by J. M. Roberts. In one of the early chapters, Roberts mentions that archeologists had found the prehistoric remains of a man who appeared to have had a physical impairment. Yet, he also appeared to have died fairly old. Roberts speculates that the man probably had to be sustained by his clan, and indeed, this man, too, seemed to have been buried surrounded by gathered flowers and nick-nacks … indicating that the people of that age were more than just beasts that looked human. They were, just maybe, compassionate and sophisticated in their understanding of human value.

photo of a marble bust of Roman Emperor ClaudiusAt the other end of the historical scale, the article refers to the fact that in the 1800s, people with disabilities were quite often integrated into their communities, and only separated and institutionalized later, during the “Progressive Era”. In fact, how the well-meaning “progressives" of the early 20th century dealt with disability is an important reminder of how good people throughout history often get things wrong … sometimes terribly wrong … and confuse altruism and charity, with prejudice and condescension.

Were institutions and "state schools" for disabled people created to protect us from society's harshness and cruelty? Or, were they really meant to get us out of the way, out from under foot, so to speak. Probably both.

Finally, I think again of my favorite disabled person from history, the Roman Emperor Claudius, who historians believe had cerebral palsy and epilepsy. We will probably never know exactly how extensive his disabilities were, or the degree to which he was stigmatized. Yet, once again the shreds of evidence are tantalizing.

I would like to know more about disability in ancient and prehistoric times. Does anyone know of any other studies, articles, or books on the subject?

Tuesday, July 22, 2014

Video Of The Day

Via the CP and Me - A Tale Of A Trex Tumblr blog.

“Inspirational”? Technically, yes … although that word is so cliché and inadequate that when applied to a disabled person, it’s borderline insulting. It reminds me of when a certain era of “liberal” white people would compliment a prominent African-American, like, say, actor Sidney Poitier, by calling him, “a credit to his race”.

Sorry, just a grumpy aside.

This is amazing and it about blew my damned mind. I especially liked seeing how she handled needing some help, and how that was depicted.

Oh, Weird Al ...

Inquisitr - July 20, 2014

I have never been a “fan” of Weird Al Yankovic, but I've always liked him and his style of song parody. He seems like a “good guy” who’s schtick is to poke fun at popular music and pop culture trends that most everyone can agree on. His satire is usually easy to take because although he sort of takes stands on things, he rarely chooses anything that’s very controversial. He would probably never make an anti-Obama video, but during just about any Presidency, he might well make a video saying, essentially, “Wow, Presidents and their silly politics. Amirite?” Truly offending people isn't part of Weird Al's formula.

That’s why it did bug me that his “Word Crimes” video includes several insults that rely on equating stupidity with actual disabled people. He doesn’t use the R-word, because as I say, Weird Al is basically a decent and slightly more progressive sort of guy than most “insult comics”. But in the video, he talks about people being “spastic” and “drooling” as if it signifies ignorance and lack of intelligence. 

I think this is further proof that people who in general don’t engage in cruel or bullying humor (the advantaged “hitting down” to make fun of the less-advanteged), still think it’s okay to make fun of mental impairment, lower intelligence, and visible disability. More precisely, they don’t think about it at all. When they do finally think about it … as Weird Al seems to have, prompted by criticism … they tend to realize that it’s no more acceptable or tasteful than racial, ethnic, or gender slurs they would never consider using. I think it says more about the status of disabled people in society today than it does about Weird Al.

What distinguishes Weird Al at the moment is how quickly he apologized, and without weasel words. Maybe it’s because he really does care about language that he is willing to acknowledge his mistake, and own up to it without hemming and hawing. Also, because his humor has always had a Middle School flavor to it … on purpose … I believe Weird Al when he says he didn’t know “spastic” would be insulting to disabled people. Most of all, I am massively grateful that he didn’t go on a tiresome rant about “political correctness” and “freedom of speech”, as so many comedians do nowadays, even some that I enjoy.

The thing is, it’s not just offense that is at issue with this kind of thing.

Comedy doesn’t have to be tasteful or respectful to be funny, but lazy comedy is pretty deadly. And calling less informed people “stupid”, “spastic”, and “drooling” is lazy. “Old school” comedians should be on alert for this, if they don’t want to date themselves. Trouble with the progressive Twitterverse might be the least of their problems. Irrelevancy is much, much worse for business. Weird Al is mainly another generation’s comic. Maybe that’s another reason he was so quick to apologize and without undue angst. Maybe he realizes that he risks dropping off the cultural map altogether if he doesn’t make an effort to keep up with the times.

Monday, July 21, 2014

Buy It: The Revolution Was Televised

If you are interested in what makes a great TV show different from bad or mediocre TV, The Revolution Was Televised: The Cops, Crooks, Slingers, and Slayers Who Changed TV Drama Forever, by TV critic Alan Sepinwall, is a good book to start. It’s also just plain fun to review some of the best TV shows you may have watched over the last 20 or so years. It also is the book that finally convinced me to watch Friday Night Lights, one of the best disability TV shows that wasn’t a disability TV show.

A New Disability Show, Maybe?

Last week, I wanted to know, “Where are the disability shows?” I assumed that there weren’t any disability-themed TV shows, or shows with disabled characters in the works for the coming year. Then yesterday, I noticed some Tweets from the Television Critics Association summer tour, discussing an upcoming new TV show called Red Band Society.

Red Band Society TV show poster
Although it doesn’t really seem to be intended as a show about disability, it looks about as close as I have ever seen to my dream disability show, about people with various disabilities living together in some kind of care institution. The kids in "Red Band Society" show seem to be more “sick” than “disabled”, but I have a feeling the two kinds of experiences on may overlap on this show.

It's interesting that none of the TV critics I follow seem to have recognized it as a disability show, as they did right away with some of last year's new shows. It seems more like they are expecting the show to deal with health care issues. Or, maybe they're not sure what the show is really going to be about.

Polseres Vermelles
I hope Todd VanDerWerff's prediction that the show might fall back on tired illness / disability tropes doesn't come true. The premise of this show is so promising ...

It's also worth noting that the Fox show is a remake of a Spanish / Catalan TV show called Polseres Vermelles, or "The Red Band Society". I'm hoping to find a way to check out that series, too.

Sunday, July 20, 2014

Maria Bamford

Sara Corbett, New York Times Magazine - July 17, 2014

I don’t think everyone is fully on board with the idea that people with “mental illness” are also disabled people, subject to similar experiences and treated in some of the same ways as wheelchair users, deaf and blind people, and people with cognitive impairments. Without meaning to, I think comedian Maria Bamford proves that the connection is valid. Read the New York Times Magazine profile, watch some of her webisodes, and if you have disabilities, you’ll recognize a lot, especially her imitations of the weird and amusing ways family and friends sometimes treat us.

Weekly Wrap-Up

Saturday, July 19, 2014

Music For A Saturday Evening: "The Thunder God"

I write a lot on this blog about life-long disabilities, mostly because that’s my personal experience. Of course, millions of disabled people experience disability as a sudden intrusion that can derail the lives they thought were ahead of them. Then there are the relatively few who have the perseverance, creativity, and support they need to take a brief detour, but ultimately get back on their original track.

I wasn’t a huge heavy metal fan in the summer of 1987 when I listened to a special radio introduction of Def Leppard’s long-awaited album Hysteria, while unpacking for my "Sophomore Summer" semester in college. So, I was only vaguely aware of what the band’s real fans knew was special about the album. Not only was it way overdue, it was overdue in large part because the band’s drummer, Rick Allen, had lost his left arm in a car accident, and the band had, basically, waited while Allen re-learned drumming on an adapted kit. Even after I heard the story, I just sort of noted it. I wasn’t really tuned in to disability as an “issue” then.

It wasn’t until just after the Americans with Disabilities Act passed that I realized that Def Leppard had, essentially, provided Allen with a pretty massive “reasonable accommodation” to an sudden disability. They could easily have parted ways with him … offering prayers of support and sad farewells, and debuting a new drummer. They weren’t stuck with Rick. They chose to stick with him, and he to the band. And a key to that was ingenuity, adaptability, and an understanding of teamwork that doesn’t see people as simply interchangeable cogs.

Def Leppard is decidedly classic “Dad Rock” at this point. I don’t think they were ever the best band in the world, or inherently better than “the bands kids listen to today”. But they were very good, and very successful, and certainly never paid a discernible price for not leaving Rick behind, in an incredibly competitive and fast-moving industry. Heavy Metal and Pop Metal are very emotional, almost sentimental genres, and a story like Rick Allen’s still to this day provokes what one YouTube commenter calls “man tears” … a.k.a. “Inspiration Porn”. It’s hard to sustain the sentimentality, though, when the product is this particular music.

I still love it, once in awhile.

Photo Of The Day

Vintage black and white photo of young man double leg amputee, seated, with his prosthetic legs off and displayed on either side of him
Onoffman: Abled-Bodies, via Ramp Your Voice.

"Smart Ass Cripple" & "The Mouth"

Recommended Links
Smart Ass Cripple - July 9, 2014

Harriet McBryde Johnson, Mouth Magazine

I hesitate to write about the negative side of disability. People are already predisposed to think that disability is more horrible than it usually is. They don’t need to hear more depressing, horrific stories. However, I think it is important to note that in both of these articles, powerlessness and fear stem as much, if not more, from how people and “systems” deal with disability, than from disability itself.

To get the help they need to live independently and productively, people with significant physical disabilities have to run their lives by committee, and prove their worthiness in ways few non-disabled adults are required to do. And, in moments of crisis and our greatest need, our wishes and knowledge are often overlooked or ignored. One can argue that we wouldn’t be in these positions if not for our disabilities. On the other hand, there is no valid reason why our disabilities should require us to surrender our autonomy or safety. To the extent we do, it is because of how other people, and society at large, choose to deal with disability.

Anyway, these articles moved me in different, though equally powerful ways.

(Thanks to Emily Ladau at Words I Wheel By for recommending the "Mouth" article).

Friday, July 18, 2014

Buy It: Children Of A Lesser God

I’m not sure how well Children of a Lesser God stands up today, but I still associate it in my mind with that late ‘80s / early ‘90s period when I was introduced to disability issues and culture. At any rate, the film is a great introduction to Marlee Matlin, who won the Best Actress Oscar for the role in 1987.

Chart Of The Day

Chart contents: Difficulty walking / climbing stairs 30.6 million, Require assistance of others for everyday tasks 12.0 million, Vision difficulty (partial or total) 8.1 million, Hearing difficulty 7.6 million, using a wheelchair 3.6 million, Alzheimers, senility or dementia 2.4 million.
Nice Census Bureau chart art on specific disability numbers. We need more visualizations like this related to disability.

One question though … Shouldn't there be another category for “Intellectual Disabilities”? “Alzheimers, senility or dementia” isn’t the same thing. Or, should it be?

Via the Access Advocates Twitter feed @AccessAdvocates.

Parents & Kids

I had some interesting Twitter conversations Wednesday afternoon, and more last night, in connection with a recent NPR story about a family raising a son with severe disabilities. Emily Ladau of Words I Wheel By had written a terrific blog post about it. Earlier the same day, I had also read a post about the same story, from a different perspective and drawing somewhat different conclusions, by Ellen Seidman of Love That Max. Emily is a young woman who has lifelong physical disabilities. Ellen has a young son with cerebral palsy. I read both of their blogs regularly.

Both bloggers are compassionate, thoughtful, insightful, and fair-minded. Both have always demonstrated passion for their point of view, but also a willingness and ability to see things from other angles.

The main issue about the radio story, which pretty much everyone seems to have liked in general, was that the parents in the story allowed photos to be taken of their teenaged son, naked except for a "diaper", and that NPR posted them with the website transcript of the story. Several commenters to the online version of the piece were upset, feeling that the young disabled man's privacy and dignity had been compromised, without his consent, by his parents allowing him to be photographed, and by NPR for posting them.

Emily agrees in her blog post that this was problematic, and described how kids, in particular, who grow up with disabilities often have their privacy violated, usually without thinking, by well-meaning clinicians and even parents. She feels that parents have a responsibility to protect their kids' dignity, especially in news and social media, no matter what higher mission might be in play.

Ellen's piece discusses the importance of showing people what caring for a disabled child means, in very concrete terms. She cites some of the other commenters, parents of disabled kids, who lament the fact that people just don't understand what it's like for them. Although she doesn't draw a hard and fast conclusion, Ellen seems to imply that the value of public exposure may, at times, outweigh the potential negatives.

I generally agree more with Emily's take, though I don't think Ellen is entirely wrong, either. I also sense that there is some misunderstanding of what some folks objected to. It isn't about body shame or wanting to hide difficult realities, it's about privacy, consent, and the duty of others to protect people who may not be able to give meaningful consent.

This brought up another thought that I have had before, but found it hard to describe. I think that there are some very significant ... and very natural ... differences, divides, and even conflicts between how parents of kids with disabilities think about disability, and how kids and former kids with disabilities think about it.

For instance, parents seem to feel that people don’t understand what they are going through raising disabled children. They seem to be hungry … not so much for sympathy, but for acknowledgement. There is a feeling that everyone's attention is focused on disabled children, and that their parents are too often forgotten and discounted.

On the other hand, disabled kids, and especially adults who had disabilities as children, look at the same situation and feel that parents get all the focus, have the biggest voices, and define the image and meaning of disabled children to the public. Since I am one of them, I’ll go ahead and say that “we” often feel like we are the forgotten ones, that our perspective is left out of our own stories about childhood disability. It’s not just that people choose the parents’ perspective over ours. It’s that they sometimes forget that we even have a perspective.

In a sense, parents of kids with disabilities, and kids with disabilities themselves, are competing for attention and a voice. Only it’s more complicated even than that. Often, it’s adults with disabilities who compete to be proxy voices for disabled kids who haven’t developed voices of their own. We bring our own experiences with us to these discussions, and often view parents of disabled kids with empathy, but also caution. Our experience lends us some credibility, but our “baggage” sometimes causes us to grind personal axes instead of looking clearly at how things really are.

I’m not sure what parents of disabled kids think, broadly, about disabled adults. Occasionally I have read hints that they feel we are claiming a role that isn't properly ours. Also, that the more articulate and organized among us don't understand how our ideas of freedom and agency miss the mark with children who have very significant physical and cognitive disabilities. That seems like fruitful ground for honest debate.

A couple of months ago a parent blogger and I did a joint blog post in which she asked me questions and I provided my answers about growing up with disabilities. I would love to see that kind of exchange happen more often, where parents of kids with disabilities, youth with disabilities, and adults who grew up with disabilities could discuss and debate our different perspectives on things like education, inclusion, therapies, caregiving, future planning, and scores of other issues we all face, together.

Maybe a Blog Hop or Link-Up? What do you think?



For what it's worth, I have had phases in my life when I was looked at from top to bottom by all sorts of medical professionals. It did bother me a bit. Not because of any shame or embarrassment about my body, but because I would occasionally feel like I was being treated as a curiosity or, quite literally, as a learning tool for interns and student nurses. There's a use for that, but it always felt much better when the people looking would ask, nicely and respectfully, if I minded.

In this case of the Lees and this article, I am willing to concede that Justin Lee probably isn't aware of his photo being publicized. However, if that's so, then I think it only makes it more important for people who know him to be extra cautious about exposing him to the public. And I think that the descriptions in the story were more than enough to make people understand the situation, without the need for photos.

Thursday, July 17, 2014

Another Chance for the CRPD

Advocacy logo for the CRPD - reading inclusion, dignity, equality ratify CRPD yes!
Ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD) will be taken up for consideration again in the U. S. Senate this Tuesday, July 22, 2014. Now would be a good time for United States residents to contact their Senators and urge them to support ratification of the treaty. It has taken too long for the Senate to ratify this uncontroversial treaty, held up only by fringe, ideological fantasies and paranoia unrelated to disability issues themselves.

Call your Senators ... especially if they voted against ratification before.

Where Are The Disability Shows?

Has anyone heard anything about new disability-themed, disabled charactered TV shows this year? Last year at this time, critics at the Television Critics Association press tour were giving us their first hopeful, though lukewarm takes on three high-profile disability shows:

Ironside tv show poster The Michael J. Fox Show TV show posterGrowing Up Fisher TV show poster
Ironside, a remake of the classic Raymond Burr series of the 60s and 70s, with the new show anchored by Blair Underwood as Robert Ironside, an NYC policeman returned to duty as a special investigator after being paralyzed by a gunshot wound.

- A Michael J. Fox sitcom, cleverly titled The Michael J. Fox Show, about a TV news anchor with Parkinson’s Disease.

Growing Up Fisher, a sit-com about a blind dad, to be played by the excellent character actor J. K. Simmons.

All three shows, at that early stage, contained the ingredients of success and possibly even significance. Ironside was a "reimagining" of an old series that viewers of a certain age remembered fondly. Michael J. Fox is a bona-fide movie and TV star, universally loved, and a well-known spokesperson for Parkinson's awareness. J. K. Simmons is less well-known outside of movie-geek circles, but came with strong comedic chops and face recognition ... he's a "that guy" you instantly recognize though you may not have ever known his name.

All three shows failed, both in ratings and, I think, ambition. Each show had it’s own problems, but I think one mistake they all made is that they relied too much on disability to carry the show. Actually "The Michael J. Fox Show" wisely let the main character’s disability to fade into the background, but then the rest of the stories and characters turned out to be too weak and conventional to make hold viewer interest. “Ironside" was basically a generic police procedural with disability tacked on. "Growing Up Fisher" seemed to be trying for a quirky, heightened tone that would sidestep realism, but did it halfheartedly, so it was weird, but not weird enough, and kind of insulting. J. K. Simmons is a great comedic actor, but he seemed limited by the need to keep doing obvious jokes about his blindness.

Meanwhile, I haven’t heard anything about any new shows with prominent disabled characters or themes. Has the industry soured on disability shows? Or, have writers, producers, and show-runners figured out that the best depictions of disability on TV have arrived unannounced?

For example, “Game Of Thrones”, which isn’t about disability at all, has three main characters with disabilities that affect their personalities and decisions significantly, but are well integrated into the larger plot of the show. “Parenthood” deals with Asberger Syndrome more directly, but only occasionally because Max is just one of an ensemble of characters in the Braverman family. Then there are the one-off and occasional appearances that make an impact … like the police chief’s daughter on “Sleepy Hollow” and the “scared straight” wheelchair banger girl on “Orange Is The New Black”.

In all of these cases, the viewers’ connections with disability work because shows and characters they like introduce them to it. Disability doesn't make a character or storyline interesting, but an interesting character or story can make disability more interesting.

I still think there’s room for a high-quality TV show focused on disability themes. However, I don’t think anyone should be trying too hard to make it happen. I would rather wait for the right story idea, and the right people to write and produce it. Until then, I think we do pretty well with the less heralded disabled characters, incorporated into shows we like already.

Wednesday, July 16, 2014

Video Of The Day

Fun with Amputee OT and her friends …

Accessibility Website UK

Computer keyboard key colored light blue with white wheelchair symbol on top
Emma Tracey, BBC - July 7, 2014

Euan’s Guide - Disabled Access Reviews is a new accessibility review website and app combination similar to AXSMap and AbleRoad. It is based in the United Kingdom, but includes site accessibility reviews in Australia, Denmark, France, Iceland, Ireland, Philippines, Poland, Switzerland, and the United States. The site announced today that it had reached 1,000 site reviews.

I think Euan’s Guide looks absolutely terrific. I love the graphics, and even though the title font looks a bit juvenile, somehow it works to make the site look fun, but not unserious. The rating system is more complicated and harder to get used to if you want to contribute your own reviews. However, the results are more detailed, easier to understand reviews for users who want to check reviews of places they would like to visit. I hope the site can draw enough reviewers to fill out the database, at least for the UK. The real challenge of these sites is to get enough accessibility reviews added in every community to make the reference meaningful. It seems like that would be easy to do, but I don’t sense a groundswell of interest among disabled people and their families in participating with these kinds of sites. I have been negligent myself.

So, once again … for all of you who care about accessibility, wherever you are … three sites you can join and post accessibility reviews of the places you visit:

Tuesday, July 15, 2014

Photo Of The Day

Vintage black and white photo of a young girl in a complex wheeled standing frame
From the Onoffman: Abled-Bodies Tumblr blog, via Ramp Your Voice.

ADA Anniversary

Logo with a grid of four icons, wheelchair symbol, blind person with cane, sign language hands, and hearing impairment
Ability Chicago / - July 11, 2014

We are coming up on the 24th anniversary of the Americans with Disabilities Act. This Ability Chicago article includes a good summary of the ADA itself, as well as some related information on more recent disability developments and trends.

Meanwhile, I am working on a blog post on the ADA, to contribute to the Disability Visibility Project, a year-long initiative by StoryCorps, culminating next year with the 25th anniversary of the ADA. I think I'll cave to the listing trend, and try something like, "5 Best Things About the ADA", or "5 Ways the ADA Helped People with Disabilities." Maybe instead I'll go negative, and list some of the disappointments of the ADA.

I am interested to read what others think about the Americans with Disabilities Act. Do you think it has "worked"? How has it helped you? Do you think things would be a lot different if it had never passed? Share your thoughts in the comments.

Monday, July 14, 2014

Fundraising Announcement

Photo of a hand held palm up, with a cartoon green dollar sign above it
After much thought, I have decided to join the Amazon Affiliate program, in order to help me support and expand Disability Thinking. If you buy any products from, using links from this blog, I will get a small percentage of the proceeds. To kick things off, I have added a menu of “Recommended” items to the right-hand sidebar … including ten of my favorite books and DVDs related to disability. From time to time, I will also post product reviews that I hope will be interesting to read, and will also include links to purchase through Disability Thinking.

Blogging isn’t expensive, but it has a cost, and some day soon I hope to add some features that definitely carry a higher price tag. I would greatly appreciate any purchases you make through Disability Thinking!

"Shared Abilities" Blog Post

Shared Abilities logo
I have a new blog post up at Shared Abilities"Could You Design a Better System?” Do check it out, and leave your ideas!

"Freakshow" Trailer

I'm looking forward to the next American Horror Story … Freakshow, because I am anxious to find out whether Ryan Murphy and his excellent troupe of actors manage to mix some humanity in with what I am sure will be plenty of gaping at freaks. I’m not optimistic, but you never know ...

Sunday, July 13, 2014

Photo Of The Day

Vintage black and white photo of a young man in a dark business suit sitting posed in a old-fashioned wheelchair

The Thing About Social Security Disability ...

Advocacy topic icon
Take another look at those charts I posted about yesterday.

I wrote about this last fall when both 60 Minutes and NPR did stories about how Social Security’s Disability rolls are, supposedly, out of control, stuffed with hard-luck cases turning to Disability for want of anything else to do. Aside from the fact that there are a dozen complex reasons why more people are on Disability than there were a few years ago … still only a fraction of Americans who have disabilities … these stories and the more recent “concerns” assume things about employment and Social Security Disability that don’t stand up to deeper thought:

- The idea that there is a job out there for everyone, and that if you don’t have a job, it’s because you aren’t trying hard enough.

- That if we could somehow drastically narrow the entry gate for Social Security Disability so that only the “really" disabled could get it, all the people cut out would just get jobs or, somehow, find other benefits.

- The notion that there is some common sense, obvious difference between “truly” disabled people … who are sympathetic, honest, and deserving of help, and the sad-sack, inadequate, possibly lazy, and not really disabled losers who use Disability, cynically, because the system allows them to.

There are other issues involved, some of them legitimate and worth careful, thoughtful study. For instance, there are still disincentives to working for people with disabilities on benefits who want to work and have the potential, and not enough people know about the work incentives that are already available.

I’m afraid that instead we will get hysteria and shaming, plus a noxious dose of “divide and conquer”, as “real” disabled people are encouraged to resent the “fake” disabled … people with chronic pain and fatigue, learning disabilities, psychiatric conditions, workplace injuries that won’t heal but aren’t immediately visible, and of course older people with any number of chronic conditions who also happen to have lost their jobs and can’t find new ones.

Meanwhile, only a very few brave advocates and politicians are willing to propose the novel idea that maybe the rise in need means we should be spending more on Disability. Maybe … just a thought.