Derailed

I’ve been thinking about trains. I used to love train rides because I’m Anne of Green Gables-style romantic about it. I even miss the rickety, unpredictable subway now living in a city without one. I like slow things, as a slow-moving person. The rumble of the tracks and ever-advancing vistas are meditative. The quirky co-riders on overnight trips like the old couple who have been taking long train rides for decades because the wife is afraid of flying. Or the porter who remembers details I share and asks about them the next time he comes by. My last long ride was from San Francisco to Philadelphia in 2016 and my last subway trip was in 2019.

“What is social media, if not watching a million trains go by that you’re not on?”

2020 began and it was full steam ahead. My life was a locomotion of creation, connection, grief, and discovery. It was rolling along as I learned, made mistakes, friends, collaborators, and art. At that time I was focusing on textile and film work exploring motherloss, diaspora, and chronic illness. I had big dreams and multi-year plans for my career that I felt I was on track for realizing.

The pandemic arrived and forced me off at the nearest stop. Early on, I believed I would sit at the station for a length of time before reboarding. Maybe the route would have changed, or the seating would be altered, but there would be a train for me. There would be a life for me. It’s been five years and I am still at the station watching a million trains go by.

Living in our current public-health-averse social climate as a chronically ill and disabled artist is isolating, infuriating, and incomprehensible.

During the first year, there was a flourishing of interest in writing and art about the realities of the pandemic. High-risk and disabled artists were invited to share their stories to provide a window into this unique and marginalized way of surviving. Events adapted to virtual offerings, but by early 2021, these accommodations had mostly disappeared. Virtual or hybrid events stopped being programmed in favour of in-person gatherings. Those same publications and calls were now explicitly prohibiting submissions that focused on, or heavily featured, COVID-19.

In the summer of 2020, I rented a studio to complete the work on a new series. I visited this studio nearly daily to stitch, plan, and deliver a series of embroidery workshops. There was good airflow, plenty of room to converse at a distance, and masking around others was still an accepted practice. It felt as safe as I could get and be around others. During my months there, for every day I was present, I was the only Black and sometimes the only non-white person in the building. It was nourishing to share space with other creators. Getting to pop in and connect was energizing. Still, I remained hyper-aware of the lack of BIPOC artists who I was exchanging support with. Masking and variants being what they have become, I don’t think I would feel comfortable sharing space like that again.

Most folks around me are chugging along ever forward, the tracks taking them to their lives expanding in front of them. They explore life uninhibited by our viral reality. My tracks loop infinitely, my train returning to the station, empty aside from me. It stands inert, awaiting my decision to embark. But I can’t get on. I try but the doors won’t open and the windows are sealed shut. I am trapped in this limbo, in this life, only able to watch the repeating, restricted routes year after year.

There is no universe where I am free from having to consider coronavirus and factor it into my decision-making. Those decisions include what and how I create, and where in the world those creations appear. So, when I think about what it is like being a BIPOC artist in Winnipeg right now, the most immediate reflections are not particularly pleasant, and that feels hard to admit. Since the onset of the pandemic, the most inclusive events I’ve been a part of have been organized almost exclusively by other disabled artists. And still, everyone has the ability to be fallible and I have unfortunately faced COVID-19 minimization and alienation within BIPOC, queer, and disability-led spaces.

It is akin to a mathematical equation, the computing and calculating I have to undergo when deciding how safe a space is for me in person and on principle.

“It’s open air” … but no seating.

"It's an inclusive event”… but there’s no hybrid or virtual option

“It's an accessible space”... but masks are a suggestion.

For a brief few weeks, those living a non-disabled life experienced a fraction of what it is like to live a medically-dangerous existence. People were mindful of their viral exposure, masking was normalized, and we could mostly agree that the harmful virus existed. However, from the first notifications of this developing scourge, medically vulnerable people were dismissed as a reasonable loss if it meant regular life could resume. I knew, unsurprisingly, that my disabled life was easily disposable.

I am tired of being disposable. That is what it feels like to be a disabled artist right now. I have been able to share my work in a myriad of places over the last five years and for that I am grateful. What I do not have gratitude for is the conflict between being invited as a creator, and my lived experience of being chronically ill.

“We would just love to interview you, in your home studio, but we can’t have you in a mask on camera”

“We are thrilled to program your work this year. Our opening will be standing room only, masks are not required..”

“Please come present to our group of over 50 people, you are welcome to wear one if you’d like.”

Within these lack of accommodations, it is implied that the camera crew will be wearing loose, ill-fitting surgical blues; light refreshments are more important than my safety; we can’t ask our participants to care about you, or each other enough to wear a mask or run an air purifier.

The dissonance is exhausting. I am invited to join but only if I compromise my principles and pretend my disabilities don’t exist or are unimpactful. Choosing to partake in these non or minimally masked events furthers this detachment because it serves to normalize not caring for each other. If someone who is able to mask in public chooses not to, they are choosing to deepen my and other’s isolation and I don’t want to be a part of perpetuating that.

In 2023, I published my first book. All I’ve ever wanted was to experience the book launch moments of being in a cozy room, sharing my words aloud, having access measures on fleek, and getting to sign books for readers one by one.

Instead, I got dressed up in gold, wheeled my chair over to my desk, and launched my first book virtually. It was sweet and special and meaningful and lonely. I tried to have it in person, but masks and precautions were not available to the degree that I would feel safe myself or safe asking high-risk kin into the room. I’ve missed out on so much and I don’t believe there will be a “returning to” or “recovery” from this still-open chapter of my life.

The cost is simply too high to risk. I am a Black, genderqueer, disabled artist who is unpartnered, and without family nearby. These truths existed and posed barriers to an easeful existence pre-pandemic. Keeping myself and my animal companions alive is paramount and perpetually difficult. If I were to develop additional chronic illnesses, on top of the struggles I survive through daily, my tenuous independence could be lost. I might have to rehome my creatures or lose the home I’ve painstakingly cultivated to keep me safe.

My practice is quieter than before and I spend 95% of my time alone. Recently I’ve begun subtly stretching my atrophied extroversion, exploring what it will mean to continue to create in such a hostile climate. How I can save room for rumination and reflection while my mind is filled with the aforementioned exposure mathematics.

I am still at the station watching mournfully as the railcars whiz past, filled with the shared air of dozens of maskless faces. I want to move forward, follow their direction but the platform ends before I can catch up. The trains keep running full speed.