Care
Visibilizing a disabled life at home in pandemic times
Publications & Showings
2023. Print Publication, Disability Intimacy: Essays on Love, Care, and Desire, edited by Alice Wong.
2023. Vitrines Exhibition, Care, Tangled Disability + Arts, Toronto, ON.
2023. Group Exhibition, Voices Embodied: Uplifted, Design Museum of Chicago, Chicago, IL.
2022. Art Review. We Keep Us Safe, by Erin Toale. Chicago Reader.
2022. Group Exhibition, For Each Other, Gallery 400, University of Illinois Chicago, Chicago, IL.
2022. Online Publication, Care During COVID: Photo Essay on Interdependence, Disability Visibility Blog.
2021. Diane Dammeyer Project Fund Recipient, Chicago, IL.
Marley, a white woman with red hair, stands with a broom in the soft morning light, her mask hanging from one ear. She looks out of the frame with a thoughtful expression. There is a pink wall and a little green plant behind her.
Kennedy: Hi, I’m Kennedy. I’m a 26-year-old fat, queer, physically disabled woman. I receive state funded home-care services that allow me to utilize Personal Assistants, or PAs, who help me with bathing, dressing, hygiene, household chores, and more. Though my life is structured around care, it is a reality that is invisible to many people around me.
Marley: I’m Marley, and I graduated college with a photojournalism degree and no job in the middle of the pandemic. I found Kennedy’s PA job posting in a queer Facebook group. I was the first PA she hired under COVID, essentially trusting me with her life due to her high risk status. Though I knew nothing about care work, I spent the rest of the pandemic working for her, learning from her, and ultimately creating with her.
Kennedy a white, fat woman with short brown hair, sits in her power wheelchair dressed and ready for the day. Her face and torso are framed by large green leaves in the foreground, and there is a soft pink wall behind her.
K: One night as we were doing our routine, we decided to shoot a photo project together. I had never seen care documented in an authentic way that wasn’t for the cover of some brochure about state funded care or a medical magazine. And I had never had a care worker who was a photographer. Marley introduced me to the concept of self-portraiture, which we chose because of the constraints around COVID safety.
M: Another large constraint in shooting this project was the state care system itself. Due to the way the system is structured, capturing imagery of the care shift while on the clock would be considered fraud. This would put Kennedy’s services and thus her livelihood at risk. This is a factor in why this experience has never been documented in this way before.
But we knew it was imperative this story be told, so we found a way around it. This project is an act of resistance against an oppressive system. Its creation was a coping mechanism in a time of heightened vulnerability. These photos are how we choose to tell our story. We invite you to bear witness.
Kennedy lays in bed with her head raised peeing out of her catheter into a urinal. Her curious cat investigates. The window shade is drawn and the early morning light leaks through the cracks, softly illuminating Kennedy. She is wearing a face mask and nightgown.
The window shade beside Kennedy’s bed is open, framing Marley as she kneels on the bed lifting Kennedy’s leg as though to stretch it. Both Kennedy and Marley are wearing face masks.
A close up image of the side of Kennedy’s back, butt, and hip. Marley’s hand presses on Kennedy’s skin leaving shadows surrounding her fingers. Kennedy’s skin is patterned with bedsheet impressions and stretch marks and Marley’s hand is adorned with knuckle tattoos. There is a pink knit blanket next to Kennedy’s body.
A photo of Kennedy in bed from the knees down. Kennedy’s legs are splayed open with her cat snuggled between them. The calico cat is hugging her right leg sleepily and affectionately, with its paw stretched open over her calf. A black sheet and pink knit blanket fill the frame behind them.
Kennedy is shown from above, laying on her back in bed and looking out the window. She is wearing a pink nightgown and a black mask, brushing her fingers through her hair. Her legs splay out to the sides and blankets, a pillow, and her cell phone are beside her.
Facing each other in masks, Marley and Kennedy are framed by a doorway as Marley reaches up to operate the hoyer Kennedy is suspended in. Warm light pours in from the bathroom door behind them though the rest of the surroundings are dim. Kennedy holds the remote operating the lift, her butt and legs hand down from the sling.
Kennedy’s head is seen from behind, with long hair on the right side of her head sectioned off with clips. Marley peers over Kennedy’s head, shaving the left side of her hair with clippers. There is an orange towel around Kennedy’s shoulders and Marley’s mask is visible. Tools for cutting hair are blurred on the wood table behind them.
From above, an orange towel drapes over Kennedy’s shoulders and power chair as she looks in a handheld mirror at her new haircut. Marley sweeps up a pile of thick hair on the floor beside Kennedy. Scissors, combs, the hair clippers, and a cell phone are littered across the table in front of them.
A close up shot framed by bright green leaves. Beyond the leaves, Marley is wearing a mask and wielding a silver watering can as Kennedy verbally directs her, maskless.
Kennedy is in her power chair looking in the bathroom mirror in front of her. Marley stands beside her with one hand brushing through Kennedy’s hair and the other hand taking a photo with a camera, standing on a tripod, fully visible in the mirror. The counter is cluttered with toiletries.
A wall divides Kennedy and Marley in separate rooms, on the left Kennedy’s feet dangle off the edge of the toilet. Her navy compression stockings are still on and her hand holding her cell phone is visible. The pink tiled shower fills the background. On the right, Marley sits in the living room reading a book on a daybed covered in a pink floral blanket. The wall behind her is green.
Kennedy is facing towards the pink tiled walls of the shower with the back of her head, back, and butt filling the frame. She has a long scar down the center of her back and multiple back fat rolls. A metal chair back frames her body. Marley’s hand reaches in from the left with a purple bar of soap.
Kennedy sits naked on a chair in her pink tiled shower, holding a hot pink loofah across her chest. She gives a sharp look directly toward the camera. Her catheter dangles from below her stomach. Her feet are dark and her skin is wet. Marley stands to her right, lifting one of Kennedy’s arms and directing the shower stream onto Kennedy’s armpit with a detachable shower head. Marley is wearing a mask.
Kennedy’s face fills the frame as Marley’s hands surround her with a blue towel. Kennedy’s eyes are closed, mid-smile, her face dotted with water droplets. A tattoo is visible on Marley’s left arm.
Kennedy lays naked in her bed on her side with her back facing the frame. The room is softly lit, the pinkness of her skin contrasting with the teal bedroom wall behind her. Fat rolls and the scar down her back are visible. Her feet are dark and her right leg is folded far over the left.
We hope to uplift the following issues alongside the photos in various formats:
Care Systems
Moving away from the historical norm of institutionalization, disability advocates have fought for new care systems like group homes and home care services programs. These allow disabled people increased independence, but still oppress them in many ways. Kennedy receives services under the Home Services Program (HSP) within the Illinois Department of Human Services (IDHS). In order for disabled people to qualify for and keep their benefits, there are caps on how much money they can save, how many hours they can utilize PAs, and what tasks PAs can perform. Anything outside of those tasks is considered fraud. For example, Marley feeding Kennedy’s cat or driving her anywhere would be considered fraud. In addition, government care workers are rarely paid a living wage, have no health insurance, and only receive paid sick leave after two years of working. In this care system, there’s never enough funding to maintain long-term, quality care workers, never enough hours to provide proper care, and never enough freedom for disabled people to truly be independent and equal.
Ableism & COVID
While shooting the project helped us emotionally process the fear and abandonment we felt during COVID, it also tapped into the United States’ burgeoning conversations around healthcare, what it means to have proper care, and the lack of it that many people experienced during the pandemic. While government officials made public proclamations about protecting those most vulnerable, their actions proved otherwise. Disabled people were asked to stay home and wait it out while others took to beaches, bars, and vacations. People couldn’t conceptualize that infecting a PA at the grocery store could lead to a disabled person's death. We thought about it everyday. Many states rationed care when COVID cases got too high for hospital capacities and any open beds were given to those deemed most likely to survive - young, non-disabled people. This is all based on the ableist assumption that disabled lives are expendable and not as valuable, as well as the false belief that able-bodied people are invincible. Many disabled people have analyzed the ways in which ableist mindsets around disposability and productivity allowed COVID to spread so rapidly.
Media Representation of Disability
Current media representations of disabled people are sparse, and when they do happen, are usually inaccurate, infantilizing, and/or medicalized. Often media portrays disabled people as inspiring/brave or tragic/pitiful, and sometimes both. The general public lacks authentic representation of disability experiences and thus devalues and misunderstands them, feeding into an ableist culture. Shooting this project allowed us to create the very thing we felt was missing in media, setting an example for new realities of care and disability activism. It allowed Kennedy to shape her own narrative and take back power in a world that understands disability as “other,” “freak,” or “medical object.” It allowed Marley to relinquish power as a photographer and work creatively in relationship with Kennedy as an equal partner, built on a foundation of trust, respect, and collective care for each other’s needs.
Though we couldn’t represent more diversity of disabled experiences due to COVID safety constraints, what we do have is our own. We hope you saw parts of yourself in this project. If you didn’t, we hope this photo project pushes you to conceptualize disabled life, more deeply consider care in your own, and become aware of the ableism surrounding you. What kind of care do you long for? How do we get there, together?
Kennedy is currently continuing this work through her disability media company, Crip Crap, founded by and for disabled people.
