Dec 282016
 

The FDA recently approved Spinraza, the first drug designed to treat spinal muscular atrophy. According to a press release from the manufacturer, infants with SMA who received the drug during clinical trials were much more likely to show improvements in motor function than those left untreated. Spinraza is approved to treat both children and adults with SMA.

It’s a bit surreal to live in a time where a specific treatment exists for my disability. I have no idea whether the drug would personally benefit me and I’m not in any hurry to find out. After living with this disability for four decades, my body’s remaining muscle tissue probably resembles the gristle of a cheap steak and I’m not sure any of it can be salvaged. This is probably thrilling news for parents with young children with SMA. It’s entirely possible that those kids will live to see a day when genetic therapies can effectively manage or even cure their condition. In another forty years, people like me could be a historical curiosity, invoking the same reactions that I had when I first saw pictures of kids living in iron lungs in the 1950s:

“People really lived like that?”

Jul 142016
 

Jerika Bolen is 14 and, like me, has a fairly severe form of spinal muscular atrophy. She lives in Appleton, Wisconsin, not far from where I grew up. And later this summer, she will voluntarily have her ventilator removed because she wants to die. Jerika cites her intractable pain as her primary motivation for ending her life and the linked article describes the numerous surgeries that she’s endured in hopes that they would bring her some relief. Unfortunately, nothing seems to have worked.

If you’re expecting me to condemn or express outrage at Jerika’s decision, I’m going to disappoint you. I’ve long believed that teenagers have the right to make medical decisions for themselves, including the decision to withdraw treatment. She seems like a bright young woman who has spent a lot of time weighing her choice before concluding it was the necessary thing to do. But I’m saddened that pain is the prime factor behind her decision. This disability we share affects everyone differently and I know that many people struggle with chronic pain related to SMA. I’m fortunate to not be living in pain and I have a difficult time even imagining what that must be like. Medical science still seems to be groping in the dark when it comes to pain management.

Jerika is planning a prom to celebrate her life. I hope it’s a memorable party.

Nov 022015
 

The Times reports on a new study that finds evidence that employers continue to discriminate against otherwise well-qualified job candidates who have a disability. Researchers sent resumes and cover letters for fictional job candidates to thousands of employers. Employers were 26% less likely to respond to the applications from candidates who indicated in their cover letters that they had a disability, even though they had the exact same qualifications as their fictional, able-bodied peers.

The fact that such discrimination persists isn’t exactly surprising to those of us who have experienced it firsthand, but it’s disappointing nonetheless. Twenty-five years after the passage of the Americans with Disabilities Act, the employment rate for people with disabilities is still abysmal and nobody seems to have any good ideas on how to improve it. We’ve had countless public awareness campaigns, demonstration projects, internship programs, and the like that are designed to encourage people to employ us, but nothing seems to stick. Of course, funding for other services like transportation and attendant care hasn’t improved much over the years, which may partially explain these stubborn statistics.

But even if funding for those services dramatically improved, I’m not so sure that employer attitudes would do the same. This study found that discrimination is most prevalent among small employers, which are the main engines of job growth in this country. Somehow, we need to convince those small employers that they are ignoring a valuable pool of potential employees.

Dec 102014
 

MIT professor Andrea Louise Campbell writes an essay for Vox describing how Medicaid forces people with disabilities to live in poverty in order to receive health coverage. She focuses on California’s Medicaid system (Medi-Cal), which she was forced to examine after her sister-in-law became a quadriplegic in an automobile accident. Many of her criticisms of the program, such as the harshness of the income and asset limits, won’t come as a surprise to those familiar with Medicaid policy.

In fact, Campbell’s outrage strikes me as naïve for a professor who teaches social welfare policy and her critique carries a worrisome undertone of middle-class entitlement. Disability advocates have long made the argument that Medicaid eligibility criteria traps people with disabilities in poverty, but Campbell only acknowledges this in passing. At one point in her essay, Campbell describes how a relative bought formula for the couple’s newborn baby and she writes, “I wondered what people who don’t have middle-class relatives do in a situation like this.” It’s really not that difficult to imagine the deprivations that people with disabilities without middle-class family members must endure, but Campbell seems shocked that this kind of thing goes on in America.

I get that most Vox readers don’t give much thought to disability policy and the article is meant to illustrate how such policy affects real families. But if Vox plans on exploring this topic further, it might be a good idea to get insights from the actual people with disabilities who live with the consequences of these policies on a daily basis.

 

Dec 022014
 

Stephen Hawking wants to play a villain in a future Bond movie. Of course, you know what this means. This means that I’m kicking off my Official Campaign to Be Stephen Hawking’s Henchman in As-Yet Undetermined James Bond Movie. I would be perfect as the guy who sits behind Hawking and glares menacingly at a bound and gagged Bond while Hawking provides a detailed explanation of his plans to destroy the Earth in a re-creation of the Big Bang. I would be willing to work for scale and call Hawking “Boss” if the script calls for it. I could even provide comic relief after Bond inevitably escapes and a furious Hawking instructs his pet cybernetically-enhanced gorilla to dispatch me.

It’s unlikely that anyone will make a (pretty good) movie about my life, so this may be my best shot at getting my name in IMDB. Anybody know a good agent?

Oct 222014
 

Ars Technica profiles the Uni, a tablet that is designed to translate American Sign Language into spoken English and vice versa. The startup company behind the Uni hopes that the device will help the deaf and hearing impaired communicate in a variety of everyday situations without relying on a human interpreter. For the Uni to achieve widespread adoption among the deaf community, it will need to overcome a high sticker price and a limited vocabulary. The vocabulary can be expanded through software updates, but price might be a more difficult issue to address (something that is true for a lot of assistive technology).

The Uni seems to rely on a combination of hardware and software to achieve its goals. As the technology on consumer tablets and phones improves, perhaps an app (or even the operating system) will be able to perform these functions. It might be a more cost-effective solution. In the meantime, let’s hope the Uni can get enough traction to continue development.

Sep 152014
 

Kanye West really doesn’t like it when people remain seated during his concerts. He is of the opinion that one must be standing to experience the full effect of the magic he is weaving onstage. If you don’t heed Kanye’s bidding to stand, you will suffer the consequences. Those consequences may include rendering Kanye unable to perform because he’s too busy cajoling you to stand up. Whether you have a legitimate reason for not standing is something that only Kanye is qualified to judge. Be prepared to present your “handicap pass” to Kanye for a thorough inspection. A follow-up interview with one of Kanye’s security personnel may be required to fully resolve the matter to his satisfaction.

Kanye only wants to lay down some truly mind-fucking beats for you. But he can’t do that if you’re just going to sit there like a jerk.

Sep 102014
 

The National Federation for the Blind is suing ride-sharing service Uber for discriminating against customers with disabilities. Several individuals allege that Uber drivers have refused to serve customers with service animals or have forced service animals to ride in the trunk. This seems like a pretty clear violation of the Americans with Disabilities, although Uber is trying to claim that it isn’t responsible for the actions of independent contractors. This lawsuit also raises some interesting questions about the “sharing economy” and its capacity to accommodate customers with disabilities. People with disabilities should be able to fully participate in this economy, but how do we ensure that private citizens–who are not employees-understand their obligations to provide reasonable accommodations?

Aug 072014
 

Governor Dayton is pushing state agencies to hire more people with disabilities through a recently signed executive order. It establishes a goal of having people with disabilities represent 7% of the state workforce by 2018 (up from the current figure of 3.2%). The Strib article notes that Minnesota has fallen behind neighboring states and the federal government in the hiring of people with disabilities.

This executive order signals good intentions from the Dayton administration, although I’m hesitant to predict what its real impact will be. People with disabilities continue to face myriad obstacles to employment including difficulties accessing transportation, job training, and health care. Any initiative to increase employment of people with disabilities must at least recognize these challenges and offer strategies for shaping appropriate accommodations.

The state has been a good employer to me. It has provided me the flexibility I need while giving me the opportunity to have a career and enjoy financial independence. I’m hopeful that this executive order will give other people with disabilities similar opportunities to realize their potential.

Aug 012014
 

Fellow gimp Ben Mattlin wrote a thoughtful Times op-ed piece about Justin Bieber, perceptions of disability, and playing the disability card. He notes that Bieber was recently photographed using a wheelchair at Disney World and suggests that this may be a sign that visible disabilities are losing some of their stigma. He then reminisces about the special treatment he received as a child because of his disability, like getting into movies for free. It’s a common life experience for those of us who grew up with a disability and like Mattlin, I now look back on those experiences with a degree of ambivalence. I definitely exploited my disability for my own ends as I was growing up, but I probably reinforced stereotypes about disability in the process.

I like to think that I’m a more enlightened person now; one who demands equal treatment and steadfastly refuses any preferential treatment rooted in pity or condescension. But if I’m honest with myself, I know that I might slip on occasion. I might accept a seat upgrade at a concert or the opportunity to avoid a line at an amusement park. Because sometimes a crip just wants a better sightline that isn’t full of legs and asses. Or because I just won’t feel like being SuperCrip, Defender of Virtuous Principles, at that particular moment.