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.

Mar 312023

Like just about everyone else on the Internet, I don’t have any keen insights regarding Trump’s indictment. I do find it amusing that this relatively small-potatoes case involving his efforts to cover up a sexual encounter is the first to expose him to criminal charges. With any luck, more serious charges will soon follow related to his attempt to overturn the 2020 election and his incitement of the January 6 riot. In a sane world, any criminal indictment would functionally disqualify Trump as a presidential candidate, but we do not live in such a world.

I have no idea how this indictment will play out politically. The charges don’t seem substantive enough to spark street riots. Then again, trying to predict how the MAGA crowd will respond to any provocation is a fool’s game. If Ron DeSantis or Nikki Haley were cleverer and more creative, they might be able to exploit the indictment to their advantage, but neither one seems to have the political chops. If anything, the person most likely to benefit is Trump, at least in the short run.

My favorite comment from someone on MetaFilter: “Hey, he finally won a popular vote!”

Mar 042023

After months of ignoring warnings from my WordPress dashboard that I needed to upgrade something called “PHP” or my blog might suffer some unspecified yet disastrous fate, I spent the last couple of hours figuring out how to do that. I soon realized that I would also have to find an updated version of my WordPress theme and install that as well. The fact that I didn’t completely vaporize my blog as I bumbled through this process has left me feeling a bit self-satisfied. I might be an old man, but I can still manage to do simple website maintenance. I’d like a cookie, please.

I also wanted to call attention to this piece in the Washington Post about North Carolina legislators finally agreeing to expand Medicaid after years of resistance from state Republicans. The article points out that political opposition to Medicaid expansion is becoming increasingly untenable for lawmakers, especially in purple states like North Carolina. And even that statement is giving Republicans too much slack. Opposition to expansion has never been tenable, at least not from a moral standpoint.

State leaders who continue to refuse expansion are denying health coverage to their neediest citizens because of an ideology that is openly hostile to any kind of assistance to the poor and marginalized. They may try to camouflage that ideology with platitudes about freedom and personal responsibility, but voters are no longer buying that bullshit. Ever since Republicans tried to repeal the Affordable Care Act in 2017, Medicaid has grown more popular as people understand its role in helping the single parent with two kids who lives down the street or the colleague at work who depends on personal care assistants to live independently. House Republicans are still flirting with deep cuts to Medicaid, but such legislation seems unlikely to pass even if a Republican president wins office next year.

Millions of people still have no health coverage because they live in red states where policymakers are more interested in making political statements than serving their people. Perhaps advocates can use North Carolina as a case study in how to persuade recalcitrant legislators to say yes to expansion.

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.

Jan 172023

I’ve been watching the second season of The White Lotus (no spoilers, please; I still have a few episodes to go) and I’m pretty enamored with the scenery of the Sicilian beaches and countryside. I’m guessing that Sicily (and Italy in general) isn’t terribly accessible, but I think that I would be content to sit on the balcony of some villa and just hang out under the Mediterranean sun. Then again, most Italian villas probably don’t have an elevator to the second floor. Fine, I’ll sit on the veranda (which sounds much fancier than “front porch) and shout hello to passersby in my horrendously accented Italian.

All of this is another way of saying that the weather in Minneapolis is cold and gray and I could use a vacation. Maybe I should add a new requirement to my job postings for nurses: “Must be willing to accompany me to exotic locales on short notice.”

Jan 022023

Happy (slightly belated) New Year! I don’t make resolutions because I’m terrible at keeping them, but here are a few things that I would like to accomplish in 2023:

  • post on this blog at least a few times each month;
  • reach my Goodreads goal of finishing 20 books this year (I’ve already logged one book for the year, but I kind of cheated by finishing it on January 1);
  • throw a memorable party for my (this can’t be right) 50th birthday;
  • start planning a trip to…somewhere (my ability to travel is going to depend on my staffing, but I’d love to visit Paris again);
  • see a live music performance (the last show that I saw was Massive Attack in October 2019); and
  • start some sort of creative writing project.

What are your hopes for the new year? Feel free to post them in the comments.

Dec 242022

I’m taking some time off during the holidays to catch up on my various pop culture obsessions, including books and games. My backlog of unplayed games is already embarrassingly long, but I couldn’t resist the impulse to buy a few more titles yesterday during the current Steam sale. I clearly have a problem. And if this whole attorney thing doesn’t work out, perhaps I can start a second career as a professional Twitch streamer. The disability community already has a presence on the site, so maybe my idea of streaming myself playing games while commenting on the latest Supreme Court decisions isn’t so far-fetched.

Speaking of virtual communities, the downward spiral of Twitter is a fascinating trainwreck. I was never a Musk fanboy, but I respected what he had accomplished with Tesla and SpaceX. But after watching him run Twitter into the ground, I wonder if Musk’s accomplishments should be attributed to employees who are much smarter than him. He seems more interested in shitposting and banning journalists rather than effectively running Twitter. And now Neuralink, Musk’s venture into brain-computer interfaces, is under investigation for animal cruelty. It looks I won’t be writing blog entries with my mind anytime soon.

Dec 112022

So, how are things? I recently joined a creative accountability group in an effort to get back into a regular writing habit and my first goal is to post a new blog entry. We’ll see what happens, but I’m feeling at least somewhat optimistic that this group can motivate me to keep blogging with some regularity.

The past year or so has been a bit rocky for me. Some of you might remember that I depend on 24-hour nursing care to live independently and that care became somewhat shaky as various nurses departed and I struggled to find people to replace them. Those of you who rely on direct care workers probably have your own stories about how the pandemic and its aftermath has made it incredibly difficult to find caregivers. For a while, it felt like I was scraping the bottom of the nursing barrel as I simply couldn’t compete with the hourly wages that hospitals and travel nurse agencies were offering. And then one of those marginal nurses managed to break my left femur on his second day with me, leaving me stuck in bed for over two months earlier this year.

Anyway, things are better now. My staffing has stabilized (at least for now) and my leg is mostly healed. My health is otherwise pretty good and work is keeping me busy, so things are certainly not terrible. But perhaps writing here more often will help me get out of my head, a place where I tend to linger more than I should. And I’m looking forward to once again sharing my thoughts on politics, pop culture, and all of the other topics typically covered in my ramblings. Stay tuned for my 3,000-word treatise on why Andor was the best thing on television this year.

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.