Posted February 8, 2022 by Alice Wong Guest Blog Posts

Care During COVID: Photo Essay on Interdependence

Marley Molkentin and Kennedy Healy

Note from the authors: The below photos were taken in Winter and Spring of 2021 in Chicago, Illinois. Our conversation was recorded and edited for length and clarity in January 2022. The lack of awareness and media representation of formalized in-home care during and before the pandemic led us to create this project. We share it in the context of a global pandemic that continues to cause great suffering to many underrepresented groups. This is the story of two people with relative privilege, told in solidarity with all those discarded and forgotten by the state.

*Credit for all the photographs: Marley Molkentin and Kennedy Healy

A landscape photo of two people in bed in the morning. Marley, a young white woman with long red hair, kneels on the bed next to Kennedy, a white disabled person with short brown hair. The window shade behind the bed is open, framing Marley as she lifts Kennedy’s leg, bending it at the knee, as though to stretch it. Both Kennedy and Marley are wearing cloth face masks.

Kennedy: My name is Kennedy. I’m a 27-year-old Fat, Queer, Crip. 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, I’m 23, 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 next year working for her, learning from her, and ultimately creating with her.

Kennedy: 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 super medicalized, staged, or stale. 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. We felt it was important to share our story. This was months into our relationship. But I want to start from the beginning. Marley, I’m curious when you first came across my application online, what drew you to apply?

A landscape, side-profile photo of Marley moving Kennedy through the room using a ceiling hoyer lift. Facing each other in masks, Marley and Kennedy are framed by a doorway as Marley reaches up to operate the lift 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 hang down from the sling.

Marley: I already knew a little bit about care work because I have a friend who uses home care services. I don’t have a health care background, but I’m definitely cool with bodies and bodily functions. I also liked the idea of working with one individual, in a home setting. While there was a certain risk with COVID, it was also safer than many other jobs. I really liked how up-front and transparent you were. I felt like our values really aligned: politically, identity-wise, both being queer, and valuing COVID safety. The pandemic launched our relationship even more intensely because we both felt a great responsibility towards each other’s health and well-being.

Kennedy: I’m glad that you did apply. Before COVID, there was a moment where we were living under Trump and Bruce Rauner as the Illinois Governor. Until more recently, I wasn’t aware of any politicized disabled people working at the Illinois Department of Human Services (IDHS), which maintains the Home Services Program the PAs are funded through. The services compared to when I first moved to Chicago in 2012 all started to dwindle. So even before the pandemic, hiring and maintaining PAs was a huge struggle given all the different barriers the system puts in place. And that’s for someone who the state deems worthy of any services at all (i.e. a U.S. citizen who is disabled “enough”).

I’ve always spent a ridiculous amount of time coordinating my care, and COVID compounded that. In Summer of 2020, I lost some PAs due to moving neighborhoods and needed to hire new folks. I think early in the pandemic we were like, “oh, we’ll just wait it out.” Then we started to see how long this was going to be and that we still had to do things like move and switch jobs. It was all incredibly daunting and felt really impossible. You were the only stranger that I hired that summer. I was asking that your other job be remote, or that you not use public transit, which is how most people in Chicago get around, especially low wage workers. It just felt like a crap shoot. And now we have this project.

A close-up landscape photo of Marley giving Kennedy a haircut. Kennedy’s head is seen from behind, with long hair on the right side of her head sectioned off with clips. Marley faces the camera, peering over Kennedy’s head, re-shaving the left side of her hair with clippers. There is an orange towel around Kennedy’s shoulders and tools for cutting hair are blurred on the wood table behind them.

Marley: It was such an amalgamation of things that came together in the worst time, but with the perfect timing for this project to happen. What were some of the other struggles that you experienced?

Kennedy: There are a lot of barriers to hiring and maintaining care workers. The state limits the hours we have to work with. The shifts are short, sometimes you need care early in the morning, often I go late at night. The pandemic made decisions and protocols even more difficult. With the help of some friends, I eventually drafted a document about what was expected of people at work and outside of work pertaining specifically to COVID, which again makes the job harder to fill. But this was so necessary for my survival. You always worry about abuse or theft when hiring a stranger to work in your home. Now I feared that people would lie to me about their COVID precautions, too.

There were few resources for obtaining proper PPE. The state sent one set of gloves and one mask for each PA, which was just offensive. It got really tight between three PAs that first pandemic winter. I felt like we were playing burnout musical chairs. When time off requests come in or when someone has a sore throat, how do I handle that? Making all those little decisions and maintaining my own mental health was incredibly difficult. What did you find some of your barriers to be as a care worker?

Marley: My pay was minimum wage for a job that is so deeply valuable to our world and our well-being. One of the biggest things that was hard on me was transportation to work. I started riding my bike for COVID safety. In the summer, it was nice. But in the winter it snowed so much I couldn’t always ride my bike, so I had to just walk.

One other barrier was the COVID anxiety. I got into this frame of mind that was necessary, but it was really anxiety-inducing. I felt like if I rub my eye accidentally while I’m in the grocery store, did I essentially just give my boss COVID? Am I going to get Kennedy sick? What if she dies? And then it turned into: if I do this small thing, I might kill Kennedy.

Kennedy: Everyone around me was having anxiety about my survival or were not that worried about it, which also felt like shit. I personally had to kind of balance things. While I know this is a catastrophe, and we do need to take precautions, how do we not spend every moment catastrophizing? Which leads to my next question: what sort of coping mechanisms or joy did we find?

Marley: We did have a lot in common and it was easy to be ourselves and crack jokes. Some of the humor was dark at times, in relation to the COVID stuff, but then I think we both had these funny, weird Midwestern childhoods that we joked about while we played 90’s R&B in the shower. There were a lot of fun moments for sure.

A portrait photo of Kennedy in the shower as Marley washes her back. 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: Yeah over these COVID winters, I’ve had to create things to maintain my mental health. I’ve had over 20 regular PAs since 2012, because that is how bad the turnover is. My relationships with the PAs who’ve worked since COVID hit are much different. Everyone has had a COVID experience – it’s a global pandemic. But being high risk and receiving in-home care is such a specific pandemic experience to live through. We were sort of each other’s pod, and it’s been great the ways we’ve collaborated. Creating the project itself, to me, was a coping mechanism. Would you agree?

Marley: Completely – I don’t know how seriously we took the idea at first, but then it seemed like more and more of a very real possibility that these photos could actually be vessels for people to understand us and give a fuck about care work and disabled lives during the pandemic. I think so many things were out of our control; this was something I could control. I can’t control COVID. I can’t control if my roommate might expose me to COVID or if somebody coughs on me at the grocery store, but I can show up with my camera and we can photograph the same stuff that we do every morning and every night and show people what we see and show people the value of what we live.

Kennedy: Yes and COVID made the project way more raw than something we would have shot pre-pandemic. The stakes were different and that changed what we wanted to put out there. The intimacy of the photos was a way to take back power that gets stripped from disabled people often in representation and many other ways.

A portrait photo of Kennedy sitting naked on a chair in her pink tiled shower, holding a hot pink loofah across her chest. She gives a sharp look to 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: Care work has always been undervalued, misunderstood, and misrepresented. Media portrayals of disabled life have been overall shitty. Then COVID happened, and there was more coverage about health/care workers and disabled people. But there was a lack of understanding, empathy, and media portraying the lives of these communities that we all should have been prioritizing.

Kennedy: I know that before working with me you had some disability frameworks, but how did doing this project as your master’s thesis while working in care work shift your perspective even more around ableism?

Marley: It was unavoidable. Learning about your life, learning about your perspectives; you had so much knowledge to pass on to me. You trained me on how to be a care worker and a big part of that is understanding ableism and power dynamics. You gave me books to read and creators to follow. It became a huge part of my life. Now I just give so much of a fuck about ableism. Every time I would bring this information to my classes, people were shocked. “Are you serious? Disabled people don’t have marriage equality? Disabled people are kept in forced poverty if they receive services? You don’t get any paid sick time!?”

Kennedy: In a pandemic…

Marley: Every time I would tell my classmates this, my close friends this, my partner this, they were all shocked. It shifted the perspectives of all the people in my life.

Kennedy: You really dove in in a way that non-disabled PAs usually don’t. That speaks to your personality, commitment, and passion. It’s one hundred percent, Marley all the time! And yes, people really don’t understand care in a political way, even if they care for children, elders, or friends’ mental health. Needing help is something we’re taught to hide and the pandemic put a huge magnifying glass to our needs. We can really see how our government wants to either fund violence or fund care and where their priorities lie. It’s helped me to start to think about care as an antithesis to violence and the thing we need to end violence of all sorts. In-home care is just one facet of that.

A portrait photo of Kennedy’s face filling the frame as Marley’s hands surround it 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.

Frameworks like disability justice and abolition don’t believe state programs can be reformed into something that works. Discussions about care collectives and mutual aid are all really helpful in terms of people building the kind of the world they want while these other systems collapse. I dream about some sort of structure where a lot more people around me are able to provide me care. Not just 3-6 PAs, like 15-30 community members who are with me long-term. And they all live in a world where they have the time, energy, and resources to do that. I think the photos you took, and the way that they captured these really intimate and slow and gentle moments that I have with care workers, really speak to the value of people spending time taking care of each other.

ABOUT

A headshot of Kennedy, a white, fat, femme, smiling softly at the camera. She has chin length brown hair with one side shaved and is wearing a blue shirt. Her electric wheelchair and Lake Michigan are behind her.

Kennedy Healy (she/her) is a Fat, Queer, Crip Chicago-based writer and consultant. Her work focuses on disability, accessibility, care, sexuality, media representation, and abolition. Most recently, she founded Crip Crap, a media company that makes media about disability, by and for disabled people. She is a Libra who loves plants, chicken wings, and feminist country music. Follow her work at www.cripcrapmedia.com or on Instagram @crip.crap.media.

A portrait photo of Marley, a young white woman with red hair, glasses, and tattoos. She stands outdoors and is holding a vintage film camera over her left eye while her right eye is open. The sun illuminates her hair as the wind blows it to the right.

Marley Molkentin (she/her) is a photographer, videographer, and digital project manager from Cincinnati, OH. She received her BA in Multimedia Photojournalism as well as MA in Civic Media from Columbia College Chicago. She is most passionate about collaborative creative storytelling that helps educate and broaden perspectives on social justice issues. You can see more of her work on her website www.marleymolkentin.com or follow her on Instagram at @marleymultimedia.

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Care During COVID: Photo Essay on Interdependence