Sunday, July 13, 2014
Monday, July 14, 2014
Tuesday, July 15, 2014
Wednesday, July 16, 2014
Thursday, July 17, 2014
Friday, July 18, 2014
Saturday, June 19, 2014
Sunday, July 20, 2014
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.
"Smart Ass Cripple" & "The Mouth"
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
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?
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Addendum:
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.
=====
Addendum:
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
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.
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, 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
Accessibility Website UK
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
ADA Anniversary
Ability Chicago / Disability.gov - 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.
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.
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