Nov 302012
 

Ken Blackwell joins other conservatives opposing ratification of the U.N. Convention on the Rights of Persons with Disabilities. Because freedom! Or something. Blackwell doesn’t give any substantive explanation for opposing the treaty. Instead, he just natters on about sovereignty and abortion. The only thing missing from his diatribe is mention of black helicopters. Meanwhile, former presidential candidate Rick Santorum calls the Convention an assault on families of children with disabilities.

I get that this opposition has little to do with people with disabilities and everything to do with right-wing paranoia, but it’s still disappointing. The Convention won’t end discrimination against people with disabilities anytime soon, but it’s the most significant declaration of disability rights to come from the international community. For the United States to refuse to ratify the treaty is an insult to every American who has advocated for those rights both here at home and around the world.

I’m hopeful that a more progressive Senate will ratify the treaty next year. Santorum and Blackwell are welcome to retreat to their underground bunkers for as long as they like.

Nov 282012
 

Over at ThinkProgress, Alyssa Rosenberg takes issue with a reviewer of the movie The Sessions, a sex comedy based on the life of Mark O’Brien. O’Brien spent most of his life in an iron lung as a result of polio; the movie depicts O’Brien’s efforts to lose his virginity with the assistance of a sex surrogate. The reviewer in question wishes that the movie would have focused more on the fragility and despair that must be inherent in O’Brien’s life. Rosenberg disagrees:

But I don’t think The Sessions is a movie about a man learning to cope with a disability—in fact, it’s a movie about a man who’s coped very well with the limitations in his mobility for years. The film explains those arrangements because it assumes that an able-bodied audience will be interested in how Mark gets around and makes a living. But it’s emphatically not about him coming to terms with the fact that he has to use an iron lung, or hire an aide, or even that in a power outage, Mark could be in considerable danger. Instead, The Sessions is a sex comedy with Mark’s experience with polio as the reason he never lost his virginity.

I haven’t seen the film yet, but Rosenberg makes a key point. Not every movie featuring a person with a disability has to be a story about struggling against the odds. Those of us who have lived with disabilities for years don’t typically perceive our own lives in such terms. We’re too busy with the prosaic details of our own lives, whether it’s going to school or hanging out with friends or trying to get laid. Our disabilities are sometimes the furthest things from our minds, particularly when we enter the realm of sex. When I’m having sex, I’m not thinking about my tenuous grip on this mortal coil. I’m thinking, “Hey, I’m having sex! This is awesome!” And when my partner has to reconnect my vent tube after accidentally disconnecting it with her foot (I’ll let your imaginations run wild here), I don’t curl up into a fetal ball and bemoan my fate. I simply thank my partner and get back to whatever we were doing. Because that’s how real life works.

Most people without disabilities (including those who work in Hollywood) have difficulty grasping how a disability can be anything other than an epic struggle that is by turns both tragic and inspirational. But there’s no reason why people with disabilities can’t be featured in sex comedies or science fiction thrillers or crime capers. We can be just another feature of the pop culture landscape rather than the go-to source for feel-good tearjerkers. Perhaps The Sessions is a signpost on the road to the movies I’m imagining.

 

Nov 272012
 

News stories about advances in prosthetics have become commonplace in the last several years as soldiers with amputated limbs returned from Iraq and Afghanistan. But those stories often ignore the challenges associated with using those devices. The Times profiles Sebastian Gallegos, a Marine struggling to learn how to use a sophisticated prosthetic arm. Despite having surgery to amplify nerve signals in his arm that control the device, he still experiences plenty of frustration as he tries to control the prosthetic.

Gallegos’ trials are familiar to anyone with a disability who has learned to use a piece of assistive technology. While some AT is more user-friendly than others, they usually require patience to master. Whenever I finally get my implanted brain-computer interface, I expect that some practice will be necessary to make the device do my bidding.

 

Nov 142012
 

I’m in the process of getting a new wheelchair approved because my current chair is eight years old and its age is beginning to show. The vendor that I’m working with told me to first get an assessment from the University of Minnesota, which required a doctor’s order. When I went to the assessment yesterday, I was told I would need to get another assessment from a separate clinic because I use a customized seating system. When I called the other clinic to set up that appointment, I was told I would need to get another doctor’s order.

I understand the need to demonstrate medical necessity for major equipment purchases like this, but the fragmented medical bureaucracy isn’t making things any easier. Can I please just have a new chair without the hoop-jumping?

Oct 312012
 

The fallout from Hurricane Sandy is making life difficult for people with disabilities in the New York City. I’ve been following the Facebook postings of Nick Dupree (I’ve written previously about Nick here), who has muscular dystrophy and lives in a lower Manhattan apartment with his partner. They’ve been without power and regular nursing care since Monday and have had to scrounge up car batteries to keep Nick’s ventilator running. They seem to be receiving help with nursing coverage and supplies from friends and neighbors, but I’m sure this disaster has been stressful on them both.

I’m not sure how I would get by in a similar situation. I have some extra vent batteries and other supplies, but living on the 19th floor wouldn’t be terribly convenient in a blackout. And I have no idea what I would do if my nurses couldn’t be here. Probably beg for help via Facebook.

Oct 252012
 

Here’s a cute video from Sesame Street featuring a new character named Brandeis, who wants nothing more than to be a service dog.

I’m betting kids will love Brandeis. And if they learn a little bit about disability in the process, even better. Let’s hope Brandeis has the chance to interact with kids with disabilities in future episodes.

Oct 232012
 

Here’s another example of eye-gaze technology being used to operate a television and an iPad. Why don’t I have this yet? Why am I still using assistive technology that has been around since Eighties? I understand that it takes a while for a concept to move from the garage to the commercial market, but…hurry up! I’d like to start using some of this stuff before I’m too senile to tell the difference between a website and a cereal box. The 1995 version of me would be very disappointed to know that his 21st century self is surrounded by all this shiny portable tech, but he’s still tethered to his desk because the Apples and Googles of the world are too busy litigating the patent rights on a rectangle to do any proper innovation.

Oct 192012
 

This weekend, I hope to watch the latest installment of How’s Your News? and its coverage of the recent national political conventions. How’s Your News? sends reporters with developmental disabilities to interview politicians, celebrities, and other newsworthy figures. The results can be sweet or funny, but they also serve as microcosm of society’s reactions to disability. Some interviewees are clearly uncomfortable and can’t wait for the encounter to end, while others are much more engaging. How’s Your News receives significant support from Trey Parker and Matt Stone, the creators of South Park, so the show’s tone is suitably irreverent and never mawkish.

The Election 2012 episode of How’s Your News? can be streamed or downloaded for $5. BoingBoing has more in-depth coverage.

Oct 112012
 

Kudos to Netflix for agreeing to caption all of its streaming content by 2014. Perhaps this will prompt all of the major streaming video players to ensure that their content is accessible. And a big “fuck you” to the Ars Technica commenters who suggested that deaf customers can take their money elsewhere if they aren’t happy with Netflix’s accessibility. As if Hulu and Amazon are doing all they can to capture the lucrative deaf demographic. The whole point of laws like the Americans with Disabilities Act is to compel businesses, within reasonable limits, to make its goods and services accessible to the public when free market principles might otherwise dictate inaction. As a nation, we’ve decided that it’s important for people with disabilities to be included in all aspects of everyday life, including consumerism. But because of recalcitrant corporations and our unceasing hero worship of unbridled capitalism, people with disabilities are forced to constantly re-litigate the question of whether we deserve to be fully participating members of society.

Oct 022012
 

Ars Technica has a nice in-depth piece on Includification, a set of best practices for making games more accessible to people with disabilities. The AbleGamers Foundation is working to persuade developers to adopt these best practices with varying levels of success. Some developers are hesitant to implement accessibility options because of concerns regarding cost or “dumbing down” the final product, while others simply haven’t given the matter much thought.

The “Includification” moniker is a little clumsy, but I’m glad to see someone taking the time to remind these companies that people with disabilities are consumers, too. Perhaps they can have a chat with BioWare, whose recent update to Star Wars: The Old Republic made the game completely unplayable for those of us who use on-screen keyboards.