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Sounds Familiar

 Disability, Pop Culture, Tech  No Responses »
Jul 022025
 

Today I learned that there is a Chinese TV series called 19th Floor. It’s about a group of students who are trapped in a VR game. I guess that means that I can’t sue for copyright infringement. But if a character with a disability and great hair shows up in the second season, I’m going to be very suspicious.

Now that I’ve been using my eye-gaze system for a few weeks, I’m kind of kicking myself for not switching sooner. It’s so much easier to move a cursor across a screen with a glance rather than my head. While I’m still hoping that neural implants become widely available in my lifetime, this is probably the next best thing. I’m even considering getting a bigger monitor now that I won’t have to worry about conserving my energy.

I’m also posting more frequently on message boards, which is probably not a great selling point for this technology.

The Ugly, No-Good, Very Bad Bill

 Current Affairs, Disability, Fucked Up, Health Care, Uncategorized  No Responses »
Jun 232025
 

Soon after Trump’s re-election, it became clear that Republicans would target Medicaid for cuts as a way to finance tax cuts for the wealthy. The House recently approved the bill containing those cuts and it’s now winding its way through the Senate. The Senate usually acts as a moderating check on the partisan tendencies of the House, but that doesn’t seem to be the case this time. The Senate version of the bill makes even deeper cuts to Medicaid by imposing a stricter version of the work requirements that passed the House. It also places tougher restrictions on the tools currently used by states to fund their Medicaid programs (if you have a burning desire to learn about provider taxes, here is a good explainer). In short, these would be the deepest cuts to Medicaid since its enactment in 1965.

I’ve seen some comments on social media from people with disabilities that are dismissive of the cuts because they don’t explicitly target us. This is a bad take because it fails to understand the practical consequences of these cuts. Federal funding for Medicaid will be reduced by hundreds of billions of dollars, leaving states with holes in their budgets that need to be filled somehow, either by raising taxes or reducing services and payments to health care providers. Raising taxes is probably a nonstarter for most legislators, so that leaves service and rate cuts. When those legislators start hunting for savings, they are sure to notice that home and community-based services are a significant chunk of states’ Medicaid budgets.

These comments are frustrating because they play into the trap that the GOP has set for people with disabilities and other marginalized groups. They want us to fight each for the scraps of a tattered safety net. Our infighting keeps us distracted while confusing the general public. The only effective way to fight these cuts is to present a united front representing everyone who depends on Medicaid for health care.

But the opposition to the One Big Beautiful Bill Act (that is the actual title of this terrible legislation) seems disjointed and maybe even a little sleepy. I’m sure a lot of groups are fighting behind the scenes, but I was hoping for more visible protests and more urgent media campaigns, much like what we saw during the failed effort to repeal the Affordable Care Act in 2017. There is still time for that to change. The House will have to pass whatever the Senate sends back to them. I just hope that we aren’t resigning ourselves to watching these draconian cuts become law.

The Eyes Have It

 Disability, Tech  1 Response »
Jun 182025
 

:blows virtual dust off this blog:

:tap tap: Is this thing on?

I wish that I could attribute my long absence from blogging to something interesting, such as a trip around the world or an intense effort to finish a novel that is sure to be a bestseller. The truth is that I’ve just been lazy. And perhaps a little discouraged at the state of :waves hand at the garbage fire raging all around us.:

Another factor that I can’t ignore is my increasing physical weakness. My disability is reminding me that it is progressive and there isn’t much I can do about it. Over the last year or so, I began to notice that typing with my head was becoming much more difficult. I focused most of my energy on just keeping up with my workload and the last thing I wanted to do at the end of the day was to keep writing.

Fortunately, technology came to the rescue in a roundabout way. Last summer, I bought an eye tracker (a PCEye 5, to be specific) for my computer. I tried it for a few days, couldn’t get it to work smoothly, gave up, and went back to using my headmouse. A few weeks ago, I decided to try the eye tracker again. After a bit of fiddling, I was able to use it with much less difficulty. I think that I’ve gotten pretty proficient since then. This entire post was written only with my eyes.

Now that writing takes much less effort than it used to, I don’t really have an excuse not to blog more frequently. I certainly have a few opinions about the current administration and its unabashed authoritarianism, as well as its efforts to kick millions of people off Medicaid. I’ll write more about those items in the coming days (assuming I don’t surrender again to laziness and ennui). Right now, it just feels good to put words on the screen.

Accessible Intelligence

 Disability, Tech  No Responses »
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.

Lock Him Up!

 Current Affairs  No Responses »
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!”

Better Late than Never

 Current Affairs, Geeking Out, Health Care  No Responses »
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.

Cleansed

 Disability, Personal  No Responses »
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.

Stuck In My Ways

 Disability, Movies, Personal  1 Response »
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.

Bellissimo!

 Miscellaneous, TV  No Responses »
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.”

Fear of Commitment

 Personal  1 Response »
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.

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