Definitely Not Standing On My Own Two Feet

 Disability, Politics  No Responses »
Sep 022019
 

Andrew Solomon (whose book Far from the Tree is on my ever-growing reading list) has an excellent essay on how those of us with disabilities see ourselves and how others see us. I particularly like this passage.

“Independence is not so brave a value as we often insist, and it is also almost impossible; we live in a collective fabric, all our lives entwined with the lives of others. Human beings are social animals. Disabled people are often dependent on other people, and in our lionization of self-sufficiency, we see that as a weakness. But dependency has its own particular poetry. It is a fundamental aspect of intimacy, a defining quality of love.”

Even after 46 years of living with a disability, I still have moments where I feel self-conscious about my dependence on others to simply live my life. Even though I’m employed and have achieved some degree of economic independence, that does not change the fact that I will always need assistance to scratch my nose or use the bathroom. I appreciate this reminder that dependence is a feature, not a bug, of being human.

Solomon’s message that we all depend on each other is especially vital at a time when the gang of assholes that is our current government is busy punishing immigrants who dare to seek some public assistance to improve their lives. This administration is doing everything in its power to bring eugenics back in style and it disturbs me to no end.

And yes, I’m blogging again. Feel free to take wagers on whether I can keep this up for more than a week or two.

Gaming Is For Everyone

 Disability, Games, Geeking Out, Tech  No Responses »
May 172018
 

For decades, people with disabilities who wanted to play video games (especially on consoles) had to improvise their own accessibility solutions. Perhaps a relative could help you modify a controller or maybe you could find a custom-built device on the Internet that would meet your needs. But these solutions tended to be expensive, finicky, and completely lacking in technical support. Console manufacturers simply didn’t recognize that they had customers with disabilities who wanted to play their games. That may be changing, though. This fall, Microsoft will release the Xbox Adaptive Controller, the first Xbox accessory that is specifically targeted at gamers with mobility impairments. The base unit (which will sell for $100) includes oversized buttons as well as 19 (!) ports for adaptive switches of various types. Here’s a video providing a closer look at the XAC:

While I don’t play on consoles (I’m a PC gamer from way back), it’s so exciting to see a major corporation recognize that people with disabilities can enjoy gaming if they are provided with flexible hardware and software. I hope that other companies take note and make a concerted effort to be more inclusive of gamers with all types of disabilities. Over the years, I’ve noticed that an increasing number of games include options to improve accessibility in the software, but accessible hardware has always been difficult to find. The XAC could represent a genuine shift in how corporations perceive both their relationship with and responsibility to customers with disabilities. A decade ago, a mass-marketed and relatively affordable accessibility device would be unthinkable. A decade from now, I hope devices like the XAC are commonplace.

To Be Young, Disabled, and Institutionalized

 Disability, Fucked Up, Wonkery  No Responses »
May 062018
 

The Star Tribune reports on young people with disabilities who are forced to live in nursing homes because of a dire shortage of home care workers across the state. Medical Assistance (the Medicaid program that funds most long-term care for Minnesotans with disabilities) pays only $12-$13 per hour for personal care assistants, which is simply not enough to attract people to a demanding profession with variable hours. The most obvious solution would be to increase the pay of these workers and disability advocates are working hard to convince the Legislature to do just that. The legislative session ends in a couple weeks, so if you’re in Minnesota, please consider calling your state legislators to ask them to support a pay increase for PCAs so that people with disabilities aren’t forced into lives of isolation.

Plenty of people with disabilities (including me) live with the nagging fear that we could end up in an institution because of a lack of adequate staffing. I’m fortunate to have a devoted team of nurses caring for me, but it would only take the sudden loss of a couple nurses for me to face the imminent possibility of life in a facility. Articles like this remind me both of how lucky I am to live at home and that my independence hangs by a tenuous thread. I’m also regretting that I read some of the nasty, dismissive comments that accompanied the article–Ayn Rand has no shortage of acolytes around here. I remain hopeful that lawmakers will recognize that they must act to preserve Minnesota’s position as a leader in supporting people with disabilities, but we need to make some noise to ensure this happens.

And Not Fade Away

 Disability, Personal, Science  No Responses »
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.

Cruel Intentions

 Current Affairs, Disability, Health Care  5 Responses »
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. 

Wonder Drug

 Disability, Science  No Responses »
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?”

Jerika’s Final Summer

 Disability  1 Response »
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.

Help Not Wanted

 Disability  No Responses »
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.

Yes, Medicaid Policies Are Terrible

 Disability, Health Care  1 Response »
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.

 

Supporting Role

 Disability, Movies  No Responses »
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?

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