CW: Ableism, mental illness, lots of personal stuff
How might you read this work. If I tell you that each French knot is a wound, or is wound 3 times with 2 strands of floss around a needle poked first front to back through the postcard, then sewn through the pre-punched hole back to front, and returned through the hole. That each hole is placed individually in relation to the work as a whole as it unfolds. That I can’t predict how it will unfold because I have aphantasia, and cannot imagine what it will look like until I’ve created it. That each knot represents four complete breathes, deeply, in and out. That each knot contains a full moment’s worth of anxiety and thoughts, that have been put in that knot so they will not be lost. Is that communication? Is it muscle memory? Is it performance? Is it adaptive? Is it obsessive? And if I tell you that I can make only a certain number of knots in a given day, because of my physical pain, that the limit to a day’s knotting is four hours. That, capitalism tells us, should make it worth a certain amount depending on how much you think I’m worth per hour. You could calculate it. Does measuring it reduce the work’s possibilities as practice, as thinking, as containing the possibility of a body over duration? Does it foreclose it’s communicative potential?
I’ve been thinking about the social construction of disability, which asserts that capacity is physically determined and differs from body to body, but those differences are transformed into disabilities (or abilities) by the constructed social and physical environment, and how this applies to neurodivergence. Neurodivergences are chemical or physical differences in the brain that change how the brain functions; I myself have more than one diagnosed neurodivergence (social and general anxiety, borderline, and aphantasia) which impact my ability to function in the world to different degrees and in differing ways, many of which have to do with managing external stimulus. I struggle to take public transportation, because of the ways in which the unpredictability, loudness, physical touching, and smells heighten my anxiety, often to the point of dizziness or nausea; instead I walk almost everywhere, or drive. Because my partner and I share a car, and he needs it to drive to work, on days when I can’t walk, I end up often taking a Lyft. This adds to my cost of living, a “disability tax.” But what if we lived in a world in which public transportation were well funded, clean, quiet, orderly or at least organized; in a society in which people interpolated as female (as I usually am) aren’t assumed to be touchable or approachable, even when wearing headphones, avoiding eye contact, wearing a hood, and using every possible method of body language to indicate a need to be left alone. I would at least be more likely to be able to use public infrastructure, saving me both time (walking) and money (taking Lyfts).
That’s just an example, but it goes so much further. I’ve been thinking about all of this because I went to the psychiatric emergency room two weeks ago experiencing severe difficulties. There were no available beds, so I went home, and enrolled in an out-patient treatment program, in which my medications were evaluated and adjusted, and I began to learn some new skills for managing my mental health more effectively. At one point, we were asked to think about ways we’ve come to begin to accept our diagnoses, something I’ve not really struggled that much with, because in some ways getting them was such a relief. I didn’t have access to good psychiatric care until my late 20s, and wasn’t diagnosed with anything until I was 31, and received my most recent diagnosis last year. And each time I learned something new about my brain, I felt such relief — what I was experiencing was real, was not how most other people around me experienced the world, and those differences were causing me real difficulties. It had a name, there was information, there was medication, treatment, and management. So when I got diagnosed with borderline I was … happy. To have something to call it, and to know that I wasn’t alone in what I was experiencing, that there was a reason many things were harder for me than for others, and that reason wasn’t that I wasn’t good enough.
An Autistic friend of mine once described her Autism superpowers to me in a casual conversation, and I began to consider my neurodiverse superpowers. Borderline makes my emotional experiences extremely intense, instead of happy I feel euphoria, instead of annoyance I feel rage, instead of sad, I feel despair. That can be hard, but it’s also amazing to have that range of experience on a regular basis. Borderline also makes my emotions extremely changeable, I can be devastated one moment and euphoric the next, which means that changing how I feel (once I learn how to do it) is pretty easy, and it’s almost impossible for me to hold a grudge unless I’m really trying hard to do it. And so on. I suggested this approach to acceptance, through a discourse of disability theory, but of course nothing works for everyone.
Which made me wonder if I could imagine a world in which neurodivergences weren’t just accommodated (and we’re a long way from that) or even accepted, but were a positive part of how we designed social and physical space. What would a world look like that would allow neurodivergent people to tune in to the benefits, the insights, the perceptions, the new and different ways of being in the world, without some of the pain that comes from being disabled, and without the need to medicate that pain away towards conformity to neurotypical expectations of function? What would we gain, as individuals and communally, from building space which does not transform neurodivergence into disability? When my lover tells me he loves my brain, he doesn’t just mean my natural intelligence as measured by neurotypical forms of evaluation, he means the ways in which it is hypersensitive, and lightning-fast with anxiety, and incapable of seeing anything but darknesses. What would it mean for academia to love my brain in that way, not just in the ways it conforms to the approved production of knowledge?
I think a lot about ableism in academia, especially as someone in a fundamentally precarious and undervalued position (though Brown compensates substantially better for adjunct work than anywhere else I’ve taught). I think that if I were given the support, the resources, I, individually, with all my disabilities and neurodivergences, needed to do my best work, I would be capable of some pretty interesting thinking, and some pretty astonishing art, and some important teaching. And I think about how many other minds and contributions are missing from this world, because of the demands being in academia comes with, and the cost of those demands being so much higher for some people than others. I think about this, and I mourn my own loss of place, of home, within an institution that was one of the places I’ve felt most at home. I mourn what my students are losing by not having me to my fullest, or at all, and what all of us are losing by the systemic exclusion of people with differing capacities and abilities. I wonder what we could be learning, under different circumstances.
As I said, last Sunday, my partner took me to the emergency room because we were both worried about my mental health. After we came up with a course of treatment, my partner took care of letting my employer know, and worked with my amazing teaching assistant to take care of all the day-to-day logistics of my adjunct teaching work. He worked with the amazing volunteer editors at Anomalous Press to delay what could be delayed, and finish what could be finished, in time to get some of our books to AWP this year with our books editor. He cancelled his spring break travel plans and stayed home with me and made sure I was safe. All this on top of providing the daily care he’s been giving me since he moved into our house last June, leaving a job he loved in San Francisco to be on the east coast where we’re both from. Laundry, meal preparation, making sure my medications are refilled, and caring for our four cats. He’s basically a superhero.
And I know that in terms of care and support, we’re lucky. This year I was offered a surprise 2/2 teaching load at Brown which is considered full time and means the university has to provide me with subsidized health care. Last year I had none, his San Francisco income made ACA coverage too expensive for us, given his San Francisco cost of living, and I was teaching only three courses that academic year at Brown. My wonderful department chairs advocated for getting me healthcare to the best of their ability, but the university’s policy is clear, and non-negotiable. And I was barely surviving that less-than-full-time course load, and the demands of my own daily needs.
So when offered the fourth course that brought me from 1/2 to 2/2, an offer that came in August just before the start of the semester, which is all too frequent timing for adjuncts, I had to do a kind of disability calculus. Having health insurance meant I could get better care, possibly resulting in me having more energy and better long-term health. But a 2/2 load would almost certainly leave me physically and mentally drained during the semesters, meaning I would need extra help at home. I’d already hired a personal assistant to help when my spoons are running low. My partner was moving in and could take some additional responsibilities: paying bills, managing running the house with our wonderful housemates, and everything else for daily life. So I took the extra work, and we hoped I’d at least break even, energetically, but with the added benefit of having healthcare and the hope of long-term improvement that comes with it. I started seeing my therapist as much as covered, seeing a psychiatrist to adjust my meds, even an acupuncturist since it was covered – why not? My medication costs were reduced, and I was able to actually see my doctor regularly. I’m physically disabled as well as neurodivergent, and when I’m responsibly caring for my physical and mental wellbeing, it takes a lot of people, and appointments, and management.
But as anticipated, I was barely able to read after a full day of teaching, much less do anything else. The first semester went ok, I managed to go to a few faculty meetings and participate in some departmental events. But by the winter break I was absolutely depleted. I decided that after this year, I couldn’t try to do this anymore. When the spring semester started, I hadn’t done as much as I’d hoped in terms of my own projects, but I’d started to develop a working plan for what I was going to do after, instead of (figuratively?) killing myself adjuncting in a system that considers me disposable and my labor essentially worthless.
And the spring semester started badly. Issues communicating about access to my teaching studio, and one of the most difficult classes I’ve had in terms of student engagement, as well as adding two thesis advisees to my schedule (because otherwise these students wouldn’t have the chance to do honors thesis work, as I understood it). It very very quickly became clear that it was too much. And I didn’t know what to do, whether there were resources for support from the university, who to talk to. My assistant and partner tried to help me manage the workload, the additional stress and emotional labor being demanded of me by situations beyond my immediate control. But I ended up starting to get sicker, and sicker. Each day was harder. And finally this month I broke.
Recently, an aphorism popped up in my Instagram feed, that said (I’m paraphrasing, and I can’t actually find it…) to pay attention to barriers, to obstacles, to closed doors, because they are keeping you out of spaces that aren’t safe for you. I often feel like I have to try to overcome them, to try harder, be better, function like everyone else at a great cost to myself, to try to prove that I have value. I’m now looking at the barriers for me to stay in academia: the drastic reduction of jobs in my field over the past ten years, with no signs of improvement; the precariousness of adjuncting even under the best of circumstances; the exhaustion and anger and worthlessness and sorrow I experience from institutional exclusion and ableism. And I see that, at least for now, I have to take these as indications that this is a space that is dangerous for me to continue to try to be in.
And I’m sorry, not just for me, for the life I had imagined I’d have, for the joy I find in teaching, and in research, and in academic inquiry, but for the students I might have had. I’m very open with my students about my identity markers, which include being physically disabled and neurodivergent. Last semester, I had a student take my class specifically because she had experienced so much ableism based on her neurodivergence, she felt my class was one of the places she could create work to her fullest potential, simply because I had a basic understanding of neurodivergence and disability theory. Every semester I meet with students who are queer, or trans, or students of color, or students from colonized backgrounds (Puerto Rican, Native, etc.), students who have few other people to ask for support, mentorship, guidance in even this most progressive, inclusive, diverse of Ivy league academic institutions.
There was an article I came across recently about the disproportional burden on faculty from marginalized backgrounds, specifically because there are so few of them, and so many students who needed mentorship and support from people who share their lived experiences. This study included how much that disproportional burden falls on adjunct or precarious professors, because so few professors from marginalized backgrounds ever make it into the tenure track, much less receive tenure. I think about that study, and about ableism, and capitalism, and colonialism, and all of the isms that make up the kyriarchy, and I feel heartbroken. And I am beginning to accept that those closed doors are closed for a reason, and that reason isn’t only about exclusion, but perhaps I can learn to see it as preservation—signals that are keeping me out of spaces that could be even more dangerous for me.