So that was 2021

What a tough year. And I had it easy! All I had to do was not catch the virus. I succeeded on that front. But like lots of others, I was also tired a lot of the time and sometimes stressed out, and didn’t get to spend time with people I wanted to spent time with.

My new book “came out” if by “come out” you mean “have a publication date in” but its actual release has been delayed by the global paper shortage. Perfect for a book on impairments!

Diminished Faculties, Available January 2022!
Diminished Faculties, Now Available January 2022!

For some unexplained reason, I exploded with writing in May after the end of classes. I have a forthcoming piece with Mehak Sawhney on AI, voice, and the will to datify, and a few others things came out of that as well. I made my first “real” video. 2022 will see at least one, maybe more, essay(s) on sound and AI, again coauthored. I might also make some progress on my book with Mara.

I spent the better part of fall quite sick from my medication, and dealing with some related dental adventures. My TAs had to quietly bail me out a couple times with things around the big class. At the same time, teaching was mostly great, graded on a Zoom curve. I was lucky to be able to teach online, so at least I didn’t have to risk my life to do my job. I lost too many work days to illness or pain in fall term, but I did ok enough. I also managed to present my work in remote corners of the world via Zoom, which was not as fun as going places, but good enough for now. I attended a few Zoom talks but really all the Zooming for teaching and meetings was too much and my desire to attend talks waned, though I made sure to show up to a few events at conferences where I was speaking, to have at least a vague feel of participating.

I work with a lot of grad students and postdocs right now, and it has been loads of fun. I learned a lot this year from them in an incredible range of areas and read–and heard–some really wonderful work that should be coming your way in a few years.

The combination of the pandemic and disability motivated me to do some activist work around Covid and disability, and there’s more to be done for sure, but it was very worthwhile. I also joined a group of Jewish faculty who are against definitions of anti-Semitism that preclude criticism of the Israeli state (how convoluted is that?). At my own university I did what I could to educate administrators about McGill’s shameful attitudes toward disabled faculty and those faculty who are around people with disabilities. I did a lot of other service as well, some of it quite meaningful, like serving on the federal SSHRC committee in my area, and working on two hiring committees.

After vaccination and the loosening of some restrictions, I was actually able to see some people from time to time and to play music with bands that included people other than Carrie. Up until then, I’d been playing with Carrie in a 2-piece we invented with her on drums and vocals and me on touch guitar. We now have a name, Ex-Minnesotan, and a nearly-finished EP (some more vocals need to be tracked). There are also two Hard Red Spring EPs waiting in the wings. I got better at touch guitar, taking lessons every couple weeks–give or take–and even tried my hand at reading music in treble clef. Markus, my teacher, said I would be able to move around the 12-24 frets more intuitively by the end of the year, and he was right.

The loosening of restrictions was hard, though. People really got lax with masks, which made going out in public potentially more dangerous for me. I walked into stores–more than once–where people were not wearing masks.

Like most of the rest of bourgeois Montreal, we discovered the joys of vacationing in rural Quebec.

I learned to cook a bunch of vegan stuff, include vegan pizzas that are not based around vegan cheese. I have a standard sambar recipe now as well. Carrie now requests a couple of them on a regular basis. We upped our vegan Sichuan game (I know that’s not a real thing but whatever).

I’m not good with year-end lists, but I read a bunch of books and articles I liked, I listened to a bunch of good music, and I used a lot of fun music technology. I also had a lot of good conversations with people, online, and off.

Finally, in the sea of death, I want to note two cherished colleagues who passed–Trevor Pinch, who has an entry below this one, and Lauren Berlant, whom I discussed on Facebook:

Like so many others in my feed, I’m gutted by the passing of Lauren Berlant. It’s a huge loss to a whole constellation of interleaving scholarly communities. We had many great conversations over the years. Here is a story: the second time I met Lauren Berlant, I was a grad student at the University of Illinois, in the mid 1990s. They had come to give a talk a year or two before and we had a brief conversation. The second time we met, they remembered who I was and what I said. And I was just a nobody grad student. Although I can be terrible with names and faces, I have tried to emulate those two qualities: treating people as people rather than holders of status (still too rare in the university system), and really listening to what people had to say. In recent years, we had an on and off conversation going about cancer from nuts and bolts stuff like food and gloves to much more profound talk about how to think about academic aspirations and limits while living with uncertainty. The last two times we met were both spontaneous: me joining at a dinner after a talk with Katie Stewart at Concordia (I wasn’t planning to go because I was so fatigued, but Carrie talked me into it and it was worth a moment of “self-overcoming” to use a Lauren phrase), and then later the same year running into them at a restaurant in Minneapolis. What’s important about my stories is that they are utterly ordinary–I wasn’t special, just another person in their orbit: Lauren touched so many people’s lives in so many different ways.

28 June 2021

The cats, meanwhile, have had a very good year. Lots of attention.

A picture of Tako, our blind dilute calico, sitting on our amplifier, with a fake fire going on the screen behind her
Cat Heater and Simulacrum
Galaxie,  our fluffy white cat, laying on her side, looking seductive, in closeup.
Oh look, a present!

Trevor Pinch and Gratitude

On December 16th, my friend and colleague Trevor Pinch passed away. Plenty of people knew Trevor better than I did. But Trevor helped me to understand what it means to be a person in the academic world.

The most important thing I learned from Trevor is gratitude. I don’t mean the platitudinous “practicing gratitude” thing that goes around every so often. Trevor had this “I can’t believe I get to do this!” affect about him. He just lived it; if he worked at it, it produced the kind of effortlessness one finds in a master musician. He understood what an immense privilege it is to be a tenured academic. This is something that is all too often forgotten. And it’s really hard to see right now, as Covid makes everyone’s job immeasurably worse and more stressful. But it is still true. We are paid to talk about ideas, and not only books, but books we find really interesting, often with people we find really interesting. We are also paid to read them and write about them.

It is hard to express how rare and special and profound Trevor’s simple acknowledgment of this fact–“it is amazing we get paid to do this”–is in my world. Part of it is the break between the reasons people get into academia and where they find themselves in it. People get in for those intellectual reasons, but soon things start to cloud and crowd and push us away from those things and towards overwork, the stress of precarity, or if we’re the lucky few tenured, an absolutely obscene amount of middle-management box checking, paper pushing, and occasionally being forced into positions that contradict our own values. All of that sucks, but the fact that we get to spend some of our time doing meaningful work–work we believe in–is a privilege. Most people don’t, and for the last two years, some of them have also had to risk their lives to do it.

Trevor was also a great example of a successful academic: he listened as much as he talked, was always curious about others’ work, kept reading and showing interest in the work of new scholars and actively promoted it, and mentored generations of students. He took his turns at service; he helped build at least two fields as spaces for others to do work. I say at least two because I only know of the two we share, Science & Technology Studies, and Sound Studies.

He was also opinionated but aware of his own opinions and limits. Several times we had a conversation about politics and scholarship, where he asked me about something he didn’t “get.” We’re not going to be good at everything, and Trevor never pretended to be.

Although he was the wrong generation for it, he also had a bit of a punk rock attitude to what he studied. Sure, he could talk about physics, or epistemology, but I am certain his best selling book was his coauthored history of the Moog synthesizer. Even in supposedly critical fields scholars too easily confuse the quality or sophistication of the scholarship with the intellectual prestige of the object of study and its conformity to the bourgeois value systems of academics. I have occasionally seen it first hand in our two shared fields. In our conversations, anyway, Trevor just. did. not. care. Of course, I met him late career, and he followed the standard path of establish yourself with a high prestige object and then branch out to stuff that your advisors wouldn’t have wanted you to study. So he could! But that kind of work has also made space for many other people.

Later on, Trevor also became one of my cancer friends. I have two kinds: there are the friends who really went out of their way to look after me when I am going through shit; and there are people who are also going through shit, with whom I can talk about going through shit. Trevor started as the first kind and became the second kind. I just pulled up an email from February 22, 2010. I was in a 2-week hospital stay that I refer to as “the longest period of my life.” I could not talk (well, maybe by then I was talking again) so I was reading and writing a lot over email from the hospital. Trevor wrote me about his travels, an exciting conference he’d been to, some books he was reading, and some music tech stuff he knew I would find interesting. He also talked about the beauty of the desert. It was an utterly banal email, but also discursive, caring, and detailed enough to stimulate my imagination.

Sadly, later on, I would be able to return the favour. But then: we got to the kind of talking the other sort of cancer friends do. The conversations were more personal, as you might imagine, but still with Trevor’s somehow effortless gratitude for the opportunities he had, even when it was just about being close to his daughter.

There’s so much else I could say, like all the great things I actually learned from Trevor about my own fields. And about being a scholar and a musician. But this is what I will say for now.

On proceduralism and disability

Last week Collegeland had a podcast on universities denying accommodations to faculty, staff and students that featured guests Bess Williamson, Aimi Hamraie, and me. It’s recommended listening if you are interested in higher education and the politics of disability.

While I was away in the forest, I finally got an email from McGill’s HR acknowledging the validity of my request for an accommodation. That’s six weeks from the request to evaluation. The “official waiting time” was one week. I also can’t say I know anyone who has had a good experience with pandemic related accommodations, not just at McGill, but anywhere. It’s been a disaster and extremely stressful and time-consuming for disabled and chronically ill faculty and staff, and those who live with someone in a high risk category.

18 months into a pandemic, it’s embarrassing. And McGill is doing better than many other universities, as we discuss in the podcast. That’s horrifying.

On September 14th, I presented members of upper admin with a set of ideas that would take pressure off HR, the gist of which I reproduce in a companion post. It is now October 25th, and nothing has changed. Or rather, the wrong thing has changed.

Right now, my university has been busy forming committees to examine the problems that HR and the administration have created by a) claiming authority over how courses should be delivered and b) employing an individualizing model of chronic illness, disability, and vulnerability that results in denial of accommodations to many people who should rightly have them. Bureaucracy has a generally slowing effect on decision-making in large organizations. Although we tend to complain about it, this can be a good thing.

But the reality is that none of these committees would have been necessary had the university simply acknowledged that there is an ongoing pandemic, and that the epidemiology behind it suggests clear courses of action for people who are a) high risk or b) live with people who are high risk. And the creation of these committess–essentially procedures to devise procedures that any thinking person could have seen coming 18 months ago–will further delays in providing proper accommodations to people. This is simply wrong. We know what ought to be done.

One of the more bizarre aspects of this whole debacle is the pernicious idea circulating through HR and some admin channels that faculty don’t want to be in classrooms with students like it’s laziness or excessive fear on our part.

Seriously, fuck that.

Maybe that describes some people somewhere. But every time I see my students online it just reminds me of how much I miss being in the same space with them.

PS: Good news since I last checked in. My digestive system is back to its “new normal,” and I am eating spicy vegan food again. I had a nice time in the woods during McGill’s first-ever fall reading week, and I am generally feeling a bit better. Last week’s blood tests shows tumour marker nice and low. I am doing a bit more socializing since I came back and it’s really nice.

Here’s what our (and probably your) university should do about disability during the pandemic

Proposed immediate solutions for faculty and staff:

Allow people to decide for themselves how to teach or do their jobs while the pandemic continues. This may include online or hybrid solutions.

This disburdens multiple levels of administration. It places a slightly greater burden on Teaching and Learning Services, but only to support the level of blended pedagogy that they did prior to the pandemic.

Someone will abuse the policy; but is this really a problem?

Proposed immediate solutions for high-risk students:

Record classes.

Use existing equipment to provide a simultaneous broadcast of a live class over Zoom.

Slightly higher burden on faculty and Teaching and Learning Services, but not compared with last year.

This may not work for all majors, programs, or courses.

Long term suggestions to avoid this problem in the future:

  1. People with disabilities should be represented at all levels of administration where decisions that affect them are concerned—especially upper administration.  This is especially important in crisis management.
  2. The university create an action plan to address its ongoing ableism.
  3. This action plan should include an approach that normalizes and de-medicalizes accommodations.
  4. The university should make choices around software and equipment with the understanding that no one solution will be accessible to everyone: flexibility is essential.
  5. The university should hire an Academic Lead and Advisor on implementing the plan, just as we have with the anti-Black racism plan.

Some background:

* Disability is a category of political and cultural belonging and not necessarily something that inheres in the individual.[1]  Environments and institutions are disabling.[2]

* Disabled and chronically ill people, and people who care for them, carry extra burdens.

* Among those burdens is the extra burden to “act as nondisabled as possible.” In a pandemic, this burden is potentially life-threatening.

* Disability may be visible or invisible. It may or may not be medically validated or tied to a clear diagnosis.

* People who may not identify with the categories of disabled or chronically ill may still be affected by ableism. People with disabilities and people with chronic illnesses may not identify with one another. Some groups like Deaf or Autistic people, may object to the label of disabled for themselves, but may act as if they have common cause with people who do identify as disabled or chronically ill; they may also be subject to similar institutional obstacles.

[1]                This is debated in the field of disability studies, but it’s a decent working condition. No scholars in the field believe in a “medical model” where disability is simply a problem of the individual. 

[2]                This is almost universally agreed upon and the relevant point from an administrative point of view.

What is a sick day?

The first rule of everything: never get cocky. Within a few days of my announcement that everything was stable with The Drugs and The Cancer, I developed an upset stomach. Like very upset, like I couldn’t digest much of anything. Also very painful cramps. And it kept going. I’m used to that happening every so often for a few days. That’s “normal.” But it just…kept…going.

There’s the normal exhaustion that goes with something like the stomach flu, except it won’t quit, and I’m on The Drugs which already make me fatigued, and the drugs I take for the riots happening in my lower intestine also make me tired. We are now approaching the three week mark. After some experimentation with prophylactic doses of Imodium over the weekend, today I am feeling like “me” for the first time in awhile. Not that I’d say everything is ok yet. I am slowly introducing things to my diet again and may even have a salad — a salad!!!! — with dinner tonight, to see what happens.

I actually googled “Imodium vs Lomotil” at one point to see if I should maybe make a switch (I can’t wait to see what kinds of ads I get served!). What I learned is that both are, at their heart, synthetic opiates. Which explains why I hate Imodium so much. Opiates make my head fuzzy, and I am a cheap date on drugs.

This also lead to a very fucked up work September for me. I am behind on almost everything except for my undergrad class, which I prioritized because it’s like a very large vehicle that doesn’t make sudden turns; and letters of recommendation, because deadlines aren’t going to wait for me. I am in a sense “lucky” to be working at home still since I doubt I would have been able to make it to campus some days where I taught or attended a meeting. I am definitionally lucky that I am teaching a course that is not a new prep. I’m also lucky that I have no urgent work deadlines coming up–a perk of having a book delayed at the printer.

And yet, it occurs to me that while I get disability leave as a benefit (complete with bureaucratic procedures and biocertification), there is no such thing as a sick day for profs, or in my case, sick weeks. Then again, last week things got really bad and I bailed on a bunch of meetings and appointments, as well as some meetups with friends and band practice (#FOMO, or perhaps #DOMO), so I guess I sort of made my own, which is certainly a privilege of the position. But the flip side of the independence that most faculty enjoy is the dependence that seems to come with it. We are solely responsible for an awful lot of things. I confess that I am not a good judge of when or how to say I am “out sick,” vs when I am “in sick.” [Insert line here from Deleuze and Guattari about the machine only working because it breaks down.]

Aaaand, some good news

The latest cancer update is that after this week’s CT scan, everything is steady and controlled, which is how it’s been for awhile. Sometimes I wonder if I should even keep doing these updates unless something goes south.

Here’s where we are at.

I’m on a kind of oral chemotherapy called a TKI. It works to stop the “innumerable” nodules in my lungs from growing. My twice-annual CT scan showed minimal growth, once again. The tumour marker in my bloods is barely there, which is also good. But the drugs won’t make the mets go away. There is no cure. So I’m in this weird situation where I can never be in remission from metastatic cancer, but I am also “under control.” This is difficult to explain to people and difficult for some to accept. “But you’re in remission, right?” No. Maybe someday that will change, but I don’t spend any energy on that possibility.

The TKIs come with a suite of side effects. The main ones for me are: fatigue, pretty much constant pain and skin peeling on my hands and feet; elevated blood pressure that can be controlled by BP meds; they also wreak havoc on my digestive system which can lead to nausea, or diarrhea, and a slowed digestion; I am frequently and easily dehydrated; I am told I am “allergic to the sun”; I get dizzy and my balance is shit; I am immunosuppressed, which is not a good thing to be in a global pandemic. Occasionally other weird stuff shows up and then goes away. When some new symptom appears, I sort of step back and assess it and don’t immediately start worrying. For instance, I once got a migraine–I’m thankful that it was only once, but also because now I understand a little more of what my friends with migraines and cluster headaches go through.

All of it is manageable but it essentially means I am disabled because of the treatment for a chronic illness. But to me it’s also normal now. Susan Wendell and Ellen Samuels both have profound things to say about this state of being in the world.

This is how it’s been for over a year now. It’s more or less how it is.

I do complain about all the side effects–last night I slept 10 hours and woke up tired and immediately complained to Carrie. But I’m also basically ok with it as long as I get to complain. I still like living and I mostly like my life.* It also helps to be married to someone who has lived with a chronic illness since 18 months (type I diabetes)–I have a good role model.

My health goals for this fall are simple: in a situation where faculty mental health is the worst I’ve ever seen it (and I mean everywhere), I am going to look after my own.** That’s #1. I will try to be kind to people. I also think it’s time to find a new physical discipline–maybe meditation, maybe yoga for fat people, maybe some kind of weight work for my legs to help with balance. And to break up my workday with more 15 minute breaks, when I can run an exercise on my touch guitar, or do something “in” my body.

*Would I rather not be living in a global pandemic? Yes, I would rather not be living in a global pandemic. I would like to see my friends more and to be able to teach in person and maybe travel once in awhile. Would I rather not have spent about 20 hours last week going to the Jewish, getting tests, waiting to see people, commuting? Yes, I would rather not have had to do that.

**I had been meaning to write about this mental health crisis, possibly for a periodical rather than in this space. But then all of the schools decided to enact sociopathic back-to-school policies for high risk faculty and students, so that’s been on my mind but apart from my first ever tweet storm I have been doing behind the scenes things there.