Mar 142018

Long-time readers of this blog may remember my imaginary rivalry with Stephen Hawking. We never did get that opportunity to face each other in a cage match aboard the International Space Station (even though my victory was always a foregone conclusion). But I digress. I was truly sorry to learn of his passing yesterday. Not only did he make scientific contributions that will be remembered for decades, but he demonstrated to the world that it’s possible to live a rich, full life with a significant disability. Not all of us will get to be world-class physicists or appear on an episode of Star Trek, but perhaps some kid with a disability will learn about Hawking and realize that her dreams of being a writer or programmer or whatever aren’t so far-fetched after all. Even better, perhaps future kids with disabilities will wonder why their grandparents made such a big deal over Hawking’s wheelchair and speech synthesizer when his mind and sense of humor were his most defining characteristics.

Godspeed, Professor. Eternity beckons.

Mar 132017

I drafted the op-ed piece below in an effort to explain why the proposed cuts to Medicaid in the American Health Care Act would be so detrimental to me and millions of others. Alas, the Times was not interested, but perhaps this is a more fitting place for it.

Soon after I turned thirteen, I was hospitalized with pneumonia and my parents confronted an agonizing choice: should they surrender their parental rights to ensure that I received the health care needed to ensure my survival? I was born with spinal muscular atrophy, a rare neuromuscular disability that severely weakens muscles and compromises breathing. I had several bouts of pneumonia as a child and had always managed to recover, but this time was different. My lungs had weakened to the point where I would need a ventilator to help me breathe. Doctors advised my parents to place me in a facility that could care for children with intensive medical needs.

Fortunately for me, my parents refused this option and eventually I returned home with a boxy yet portable ventilator on the back of my wheelchair (this was 1987, when most technology was still in its boxy phase). Caring for me wasn’t always easy for my parents. I’m essentially a quadriplegic and I need help with everything from bathing and dressing to scratching my nose when I have an itch. But thanks to Medicaid, they didn’t have to care for me around the clock. Medicaid provided nurses to take me to school, which allowed my parents to keep working. It paid for modifications to my wheelchair so that I could leave the house more easily. Without the supports provided under Medicaid, I would not have been able to finish college and move to Minnesota for law school.

Today, I’m 43; I live independently and work as an attorney for the State of Minnesota. My life is ordinary in the best sense of the word. When I’m not at work, I go to the movies (Logan was great!), check out the occasional concert (you really must see CHVRCHES live), and generally indulge my pop culture obsessions (that new Star Trek series had better be worth the wait). None of this would be possible without the excellent, round-the-clock care that I receive under Medicaid.

Medicaid has made my life immeasurably better, along with the lives of countless others. However, that isn’t stopping congressional Republicans from embarking on an ideological mission to starve Medicaid of funds. Last week, House Republicans unveiled a bill to repeal and replace the Affordable Care Act. The entire bill is a travesty, but its proposed changes to Medicaid are particularly troubling. First, the bill would gradually repeal the expansion of Medicaid for low-income adults without children. This provision would rob eleven million people of the health coverage that they gained just a few years ago. Many of the people who benefited from the expansion have chronic conditions such as diabetes or mental illness that previously went untreated. Medicaid. Second, the bill makes radical changes to the funding of Medicaid. It would establish caps on the amount of federal funding for each Medicaid enrollee. While this may seem like a technical change, it would dramatically reduce Medicaid funding over time. Under such a scheme, states like Minnesota would soon face budget shortfalls totaling billions of dollars and they would be forced to find savings by cutting services, reducing payments to providers, or both.

For people with disabilities like me, such cuts could be catastrophic. States could eliminate services that we depend on in our daily lives, such as personal care attendants or specialized equipment like communication devices. Those of us who are employed could lose the option to buy into Medicaid, forcing us to quit our jobs in order to preserve our health coverage. In some cases, we may face the dreaded possibility of institutionalization and isolation from our communities.

Republicans claim that these changes are necessary to “save” Medicaid and protect it “for the most vulnerable.” These claims are absurd and deserve no credence. Like any program devised by humans, Medicaid has its flaws, but the Republican bill would do nothing to address those flaws. The true rationale for these cuts to Medicaid is to pay for the repeal of the taxes on businesses and the wealthy that fund the ACA. The vulnerable people whom Republicans claim to champion are those who will suffer the most if this bill becomes law.

Medicaid has been instrumental in helping people with disabilities achieve lives of independence and dignity. Advocates have worked tirelessly to improve the program and its focus on providing services in the community. The Republican bill puts those hard-fought accomplishments in jeopardy and threatens real harm to those of us who depend on the program for our very survival. The only thing that Medicaid needs saving from is this vicious and mean-spirited legislation. 

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?