wintermute2_0

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.

Sep 112019
 

I had the good fortune to attend last night’s Massive Attack concert at the Palace Theater in downtown St. Paul. The group performed most of the tracks from its landmark 1998 album Mezzanine, which I played incessantly back in those days. I had doubts about whether Mezzanine‘s dystopian soundscapes could be reproduced in a live setting, but the band nailed every song.

I could have done with a bit less of the strobing lights and video montage that accompanied the performance. I wouldn’t be surprised if a few people in the audience suffered seizures as a result of the light show. The video featured a lot of footage from the 90s depicting the rise of the Internet and celebrity culture, as well as more disturbing scenes from the Gulf Wars. I get the intended message–our current fucked-up state of affairs had its origins in seemingly simpler times. That message was diminished by the video’s self-indulgence.

Minor criticisms aside, this was a memorable concert. Horace Andy delivered a spooky yet beautiful rendition of “Angel.” And I won’t soon forget watching Liz Fraser (formerly of the Cocteau Twins) perform “Teardrop” on a stage of shadow and light. Check it out:

Sep 082019
 
The Calculating Stars (Lady Astronaut, #1)

The Calculating Stars by Mary Robinette Kowal

My rating: 4 of 5 stars


Set in an alternate history where a massive asteroid hits America’s East Coast in 1952, the book follows one woman who dreams of becoming an astronaut as efforts to colonize space begin in earnest. The rampant racism and sexism of that era is an integral part of the story, giving the book a degree of authenticity that elevates it above a simple what-if tale. Kowal delivers the story in tightly paced chapters that still give her complex characters room to breathe. It’s little wonder that the book won this year’s Hugo for best novel.



View all my reviews

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.

Dec 312018
 

Aside from a few health issues, 2018 treated me relatively well. The news cycle seemed endless and 2019 will probably be more of the same, but pop culture always provides me with an escape. Here are the books, TV, movies, and music that sustained me over the past year.

Movies

  • Black Panther 
  • A Quiet Place
  • Leave No Trace
  • Hereditary
  • First Reformed
  • Hostiles
  • Spider-Man: Into the Spider-Verse

TV

  • The Americans
  • The Terror
  • The Haunting of Hill House
  • The Good Place
  • Killing Eve
  • Barry
  • Better Call Saul

Books

  • The Underground Railroad by Colson Whitehead
  • Bad Blood: Secrets and Lies in a Silicon Valley Startup by John Carreyrou
  • The Fifth Season by N.K. Jemisin
  • The Long Way to a Small, Angry Planet by Becky Chambers
  • The Magician King by Lev Grossman

Music

  • Honey by Robyn
  • Dirty Computer by Janelle Monae
  • Time ‘n’ Place by Kero Kero Bonito
  • Heaven and Earth by Kamasi Washington

I hope 2019 brings you good things. Have a safe and happy New Year!

Nov 232018
 

Ugh, so much for getting back on a regular blogging schedule. I came down with a nasty infection over the summer, followed by a flurry of less severe but still annoying health issues. I began to worry that I was approaching my expiration date and I withdrew into myself for a time. But thanks to excellent care from my doctors and team of nurses, I slowly recovered and now I’m pretty much back to normal. I now have to take a medication for high blood pressure, but that seems like a small price to pay in order to remain on this mortal coil for a while longer.

Anyway, I’ll try to do a better job of being more consistent with my blogging going forward. Here are a few random thoughts that I’ve been meaning to share:

  • The Haunting of Hill House is one of the best TV shows that I’ve seen this year. It’s a visually sumptuous story that finds horror in both the supernatural and in the dynamics of a broken family.
  • Minnesota Democrats performed even better than I thought they would in the midterm elections. They would have complete control of state government but for the fact that the Senate was not up for re-election (except for one seat). I’m hopeful for progress on initiatives that will make health care more affordable and accessible to those who have fallen through the gaps of the ACA marketplace. MinnesotaCare for all, perhaps?
  • The Packers are not a good team this year. Injuries seem to plague the Packers every year, but I’m beginning to wonder whether a change in coaching might be in order. For too long, the team has relied on a strategy of giving the ball to Aaron Rodgers and hoping for the best. But that strategy depends on a deep pool of talent in the receiver corps, which they don’t have right now.

I hope everyone had a wonderful Thanksgiving. And thanks for reading.

Nov 232018
 

Bad Blood: Secrets and Lies in a Silicon Valley StartupBad Blood: Secrets and Lies in a Silicon Valley Startup by John Carreyrou
My rating: 4 of 5 stars

I don’t typically read business books, but the fall of Theranos is a story that intrigues me because so many smart people failed to ask the questions that could have exposed the company as a complete fraud before it became a darling of Silicon Valley. Carreyrou provides a fascinating account of the fear and paranoia that permeated the culture of Theranos even in its earliest days. Elizabeth Holmes may not know much about chemistry or engineering, but she excelled at creating a cult of personality that borrows heavily from the autocrat’s playbook; something that Carreyrou emphasizes repeatedly throughout this extensively detailed book based on his own reporting for the Wall Street Journal.

View all my reviews

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.