Living with a permanent illness takes a toll, and it becomes even more horrifying when the world is set on leaving you behind.
Over the summer, I began documenting my experience with chronic illness, the way it impacts my moods and mobility, and how it disrupts my life. I was in such a deep depressive state, and all I could think about was the ways I did not want to exist anymore. I was tired of fighting with my body as it fights with itself. I was tired of masking—I even had a horrible desire to die of COVID. I was tired of pretending that things were okay when they were not. And, beyond tired, I was so fucking angry.
So. I took portraits of myself during doctor visits, close-ups of the medication that I take, and the infusions I need to continue my life. At the time, I was struggling with my mental and physical health and needed validation that my existence meant something. I often dismiss my own suffering, pain, and bodily dis-ease to the point of forgetting my limits.
Last summer, I almost gave up living. My body would not stop attacking itself. I stopped masking for a while because I just did not fucking care if I lived or died. Life didn’t feel real. Still doesn’t.
Every six weeks, I get medical infusions to suppress my immune system so that it stops attacking itself. Without health insurance, these infusion treatments cost $44,100. With insurance, I pay $100. However, the reality of living alone makes every penny precious. I haven’t had the money to cover my expenses and medical bills lately—just the necessities.
I have been struggling to find examples of films in dominant Hollywood that do not position disability or chronic illness as being a pitiful existence. It has been more difficult to find films that portray Black disabled folks with dignity. Lately, the works and words of artist Carolyn Lazard have been rolling over in my head.
“Carolyn Lazard is an artist exploring the limits of aesthetic perception and using accessibility as a creative tool for collective practices of care. With a practice that spans the mediums of video, installation, sculpture, and performance, their work challenges ableist expectations of solo productivity and efficiency. They approach these subjects using the minimalist language of conceptual art and avant-garde cinema.” (source)
Lazard’s work centers on the intersections of race, gender, disability, and the liminal spaces in between where chronic illness exists. In their work, disability and chronic illness are not explored as inferior to able-bodiedness. Instead, Lazard focuses their critical gaze on the inferiority and inadequacy of biomedicine, capitalism, and ableism in our society. In their work, the chronically ill and disabled body is not a site for pity but a site of infinite possibilities of living life differently, much more intentionally, more caringly.
“My body is a compass. It’s made of stars. It’s the interlocutor between me and the world. Being sick, and figuring out how to be sick, is a speculative practice. The speculation has no end and is no means to an end. My body is a balloon tethered to a brick. It’s also the brick. And the string.” — “The World is Unknown” by Carolyn Lazard
Here are some films that explore the body as a compass.
CRIP TIME by C Lazard
Fire Through Dry Grass | Documentary | Watch Here
Wearing snapback caps and Air Jordans, the Reality Poets don’t look like typical nursing home residents. In Fire Through Dry Grass, these young, Black, and brown disabled artists document their lives on lockdown during Covid, using their poetry and art to underscore the danger and imprisonment they feel. In the face of institutional neglect, they refuse to be abused, confined, and erased.
unseen | documentary | watch here
As a blind, undocumented immigrant, Pedro faces uncertainty to obtain his college degree, become a social worker, and support his family. Through experimental cinematography and sound, unseen reimagines the accessibility of cinema, while exploring the intersections of immigration, disability, and mental health.
Eat Your Catfish | Documentary | watch here
Paralyzed by late-stage ALS and reliant on round-the-clock care, Kathryn clings to a mordant wit as she yearns to witness her daughter's wedding. Shot from her fixed point of view, Eat Your Catfish delivers a brutally frank and darkly humorous portrait of a family teetering on the brink, grappling with the daily demands of disability and in-home caretaking.
Wisdom Gone Wild | Documentary | watch here
A vibrant tender cine-poem, a filmmaker collaborates with her Nisei mother as they confront the painful curious reality of wisdom ‘gone wild’ in the shadows of dementia. Made over 16 years, the film blends humor and sadness in an encounter between mother and daughter that blooms into an affectionate portrait of love, care, and a relationship transformed.