May 212023

I’ve been thinking a lot about the rise of generative AI and how it might eventually improve the lives of people with disabilities, including my own. In the short term, it has the potential to become a more versatile form of assistive technology that is much more adept at anticipating its user’s needs. Even as I’m writing this post, my Edge browser is offering word suggestions that are on-point more often than not. And Google’s new GameFace software uses machine learning to allow users to control a mouse and play games with facial gestures. I haven’t tried it yet, but here’s a video profiling Lance, a gamer with muscular dystrophy who served as an inspiration for the development of GameFace:

But what else could AI do for people with disabilities as it becomes smarter and more sophisticated? Could it live on a phone belonging to someone with a cognitive disability and guide them through everyday tasks like grocery shopping or using public transportation? Could it act as a portable sign language interpreter for someone who is deaf? When I saw the movie Her years ago, I became enamored with the idea of a digital assistant companion who would be indistinguishable from an actual human. I’m still skeptical that such technology will exist in my lifetime, but I’m a little less certain than I was a few months ago.

I may be naive about the promise of AI considering that so many people who are much smarter than me are warning that it could lead to humanity’s demise. And I need to acknowledge my own biases about technology and its potential to make life better; biases that are nevertheless informed by my lived experience. Had I been born even fifty years earlier, my life would have been shorter and harsher. Technology, in all its forms, has made so much possible for those of us with disabilities and that fact gives me hope that this new, barely comprehensible tech can be wielded not as an instrument of destruction, but rather as a tool for shaping a more equitable and accessible world.

Feb 272023

Over the weekend, I took my first shower since last May.

“Mark, what the hell? You haven’t showered in nine months?”

I’ll try to give the short version of the story.

When I broke my leg last year, I was stuck in bed for a couple of months. When I was finally able to get out of bed, I used my shower for a couple days before discovering that water was leaking through the floor and into the units below. So I had to get estimates from contractors who were already overbooked with other projects. And then when I realized the extent of the work needed to fix the problem, I decided to see if I would qualify for waiver funding to help cover the costs of the modifications. It took a few more months of navigating the bureaucracy before I finally received word that I would qualify for funds. And then the contractor had to order the parts and wait for them to arrive.

The workers still need to put a few finishing touches on the bathroom, but they told me that I could start using it over the weekend. After months of lukewarm bed baths, the sensation of hot water pouring over me…well, it was pretty damn amazing. I’m grateful for the assistance that I received to make my bathroom functional again; I just wish the process could have been faster.

Perhaps I’ll do a separate blog post on how people with disabilities must develop a mastery of bureaucratic arcanery in order to get the supports we need. But first, I’m going to take another shower.

Jan 292023

After nearly ten years of using the same wheelchair, I’m in the process of transitioning to a new chair and the experience has been more difficult than I anticipated. The new chair has a customized seat that is subtly different than my old seat, but the differences are enough to cause me some discomfort. As I’m writing this, I’m sitting in my old chair while the new chair occupies a corner of the living room until I can schedule an appointment for further seating adjustments.

I’m sure that I’ll settle into the new chair eventually, but I’ve been asking myself if I’m becoming a cranky old man who is growing resistant to change. After all, I use the same assistive technology to access my computer as I did when grunge music swept the nation thirty years ago. I refuse to sign up for a TikTok account. And I still write “e-mail” with a hyphen. Taken together, these are strong indicators that I’m approaching the “shakes fist at cloud” stage of my life.

In completely unrelated news, I watched Tár last night and I recommend it. My very brief review is here.

Apr 152020

Ed Yong writes in The Atlantic about what our Pandemic Summer might look like. It has a strong dystopian vibe: frequent testing for the virus, half-empty restaurants and classrooms, and intermittent lockdowns in the event of additional outbreaks. You probably won’t be able to see a ball game or attend a big family reunion anytime soon. This summer and the months beyond are going to be a time of uncertainty as we try to figure out how to live with the coronavirus until a vaccine is available.

Yong also points out that we will all need resilience to cope with what lies ahead; something that people with disabilities have been practicing for most of our lives:

The disability community has also noted that, at a time when their health is in jeopardy and their value is in question, abled people are struggling with a new normal that is their old normal—spatial confinement, unpredictable futures, social distance. “We know how to do community from afar, and how to organize from bed,” said Ashley Shew of Virginia Tech, who studies the intersection between technology and disability. “Instead of feeling this great vacuum, our social life hasn’t radically changed.” 

When people ask me how I’ve been doing during the quarantine, I shrug and say, “Fine.” It’s not that I don’t miss my friends and co-workers or going to the movies. I do, but it’s not like I had a packed social calendar before the pandemic arrived. Given the specifics of my disability, the lack of accessibility in much of our built environment, and my own introversion, I’m already accustomed to some degree of isolation. As long as I have a working Internet connection, I can find plenty of things to keep me occupied at home. And I have a nice view of downtown, which helps to keep the walls from closing in.

Right now, I’m not planning on visiting a restaurant or movie theater until this fall at the earliest. If I turn out to be wrong, great. A strategy of hoping for the best but expecting the worst might be the best approach for the next few months. For many of us with disabilities, such thinking is already our default.

Oct 312019

I had my fifth Spinraza injection today and the process is becoming fairly routine. My nurses and the radiology staff are proficient at positioning me on the table attached to the CT machine and the whole procedure takes less than an hour. The radiologist wanted to experiment with using ultrasound to guide the needle into my spine (in order to minimize my exposure to radiation) and I agreed to let him try. It meant that the needle was in my back a little longer than I would have liked, but I’m happy to help further the cause of science.

I’m supposed to lie down for a few hours when I get home to minimize chances of getting a headache, but I didn’t even bother this time. It’s reassuring to know that middle age hasn’t entirely obliterated my rebellious streak.

I’m still not noticing significant improvements as a result of the injections, but I didn’t really expect to see any. I do experience bursts of energy after the injections, which is both nice and kind of weird. I’ve joked that I just want the drug to buy me enough time to see the inevitable Star Wars/Avengers blockbuster in theaters. My eventual decline is inevitable (as it is for everyone), but I’ll gladly pursue any treatment that might give me a few more years of stable health. My brother and his partner adopted an impossibly adorable little girl last year and I’d like to stick around long enough for her to get to know me. And I should probably try writing something again. I might even summon the courage to try dating.

At some point, it won’t make sense to continue these treatments, but hopefully that day is still well beyond the horizon.

Oct 052019

The Star Tribune has a great profile of Shane Bercaw and Hannah Aylward (or Squirmy and Grubs to their fans), a young Minnesota couple who have earned a considerable following on YouTube by vlogging about their unique relationship. Shane has spinal muscular atrophy and Hannah is able-bodied. Their videos offer glimpses into various aspects of their relationship and some of the challenges that they encounter as they go about their lives. Here’s a cute video showing how Shane and Hannah cuddle:

And here’s another one recounting the hassles they faced while planning a trip to Poland (at least Shane didn’t have to deal with the airline losing his wheelchair in Amsterdam, which happened during my European trip years ago):

The Strib article also describes some of the cruel and thoughtless comments that their videos have received. Unfortunately, this doesn’t surprise me; misconceptions about disability, dating, and sexuality are stubbornly persistent. But I’m glad to see Shane and Hannah make the effort to document their relationship in both its ordinary and distinctive facets. I’m not sure that I would be willing to be as open about my personal life (although that may be because I am old and increasingly crotchety). Videos like these could go a long way towards normalizing how people see relationships like theirs, even if it means putting up with all the assholes online.

Perhaps I can persuade Shane and Hannah to do a brief interview for my dusty corner of the Internet. Feel free to suggest questions.

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.

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.

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.

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.