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.

Apr 102020
 

Well, all of this is pretty awful, isn’t it?

I’ve read and watched plenty of dystopian fiction over the years and I would idly wonder what it would be like to live through some kind of global crisis. And I guess I have my answer now. For me, the past four weeks have been a surreal blur as I watch a litany of horrors unfold on television and in my Twitter feed, punctuated by moments of anxiety or rage. I worry about getting sick (even though I I haven’t left my home in over four weeks). I’m being very careful to limit my contact with other people, but I can’t completely isolate myself because I still rely on a team of nurses for my daily needs. They are being incredibly conscientious about washing their hands and staying at home, but my risk of getting sick certainly isn’t nil.

And when I’m not worrying about my own health, I’m fuming at Trump’s boundless narcissism, stupidity, and incompetence. All of these traits were fully on display during his presidential run, but his supporters simply shrugged and handed the White House to a man singularly unfit for the office. And now here we are. Do you want to know what really sends me into a white-hot rage? Despite this administration perpetuating a clusterfuck of historic proportions, the fall election will still be a close affair because conservatives have convinced millions of Americans that any efforts to create a more humane society will turn us into communist zombies or some such bullshit.

In the midst of my anxiety and outrage, I need to remember how fortunate I am. I’m still employed and able to work from home. So many people are struggling with basic issues of survival and I’m fretting about politics.

I probably won’t be able to leave home for at least a few more weeks and I hope to do some more blogging during this weird time. Writing has always helped me clarify my thoughts and I haven’t done enough of it lately. In the meantime, please wash your hands and stay home as much as you can. You’re giving people like me a fighting chance to live through this pandemic.

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 162019
 

Of all the candidates seeking the Democratic nomination for president, I think Elizabeth Warren is the best choice to challenge Trump. She has bold plans to address the nation’s structural problems and she has a demonstrated ability to generate enthusiasm on the campaign trail. But I’m increasingly puzzled by her insistence on pushing a Medicare-for-All plan that plays right into the GOP’s scaremongering tactics and that probably has little chance of getting through Congress.

Our health care system is undoubtedly broken and comprehensive reform is urgently needed. However, reform efforts need to reckon with the fact that most people are risk-averse when it comes to their health care. They may not like their current coverage (if they even have any), but current polling shows that they’re also not enthusiastic about a dramatic transition to a single-payer system. The same polling also shows that Americans overwhelmingly support a public option that could serve as an alternative to individual or employer-based coverage. At a time when people’s trust in government is already at abysmal levels, Warren’s strict adherence to a mandatory single payer plan ignores political realities and paints her into an ideological corner when she should be trying to grow her appeal. If the whole point of her campaign is to win the presidency, why push for a policy that is already unpopular and could become even less popular in the run-up to the general election?

Some of you reading this may accuse me of being a mushy moderate on this issue. Fair enough, but I think people are forgetting that the Affordable Care Act—a comparatively modest set of reforms—was fiercely opposed by conservatives and is still being challenged in court nearly a decade after its passage. A fight to pass Medicare-for-All would be an epic struggle that would likely exhaust all of President Warren’s political capital and failure could close the door on future reforms for years to come. A public option has its own implementation problems, but it already enjoys wide support and could improve people’s lives sooner.

I’m hopeful that Warren will show more flexibility on health care reform if she becomes the nominee. Trump will have plenty of strategies for attacking the eventual nominee. We should be careful about supplying him additional ammunition.

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.