Art, Health & Human Connection: How Creativity Shapes Our Well-Being

We live in and navigate so many interconnected systems to survive and thrive. No one knows this better than ​Jess Walters (they/them). A Deaf, queer and neurodivergent mixed-media artist, Jess is also a Board Certified Patient Advocate (BCPA) and independent scholar from Charlottesville, Virginia. They began using art as a tool for introspection and meditation in 2018 during a period of kidney failure. As an Arts Research Fellow at the Center for Health Humanities and Ethics, Jess works to assess and improve accessibility in Charlottesville's creative arts spaces. They also serve as a patient representative on the Rare Disease Advisory Panel for the Patient-Centered Outcomes Research Institute (PCORI) and on the Kidney Advisory Committee DEI Advisory Board for the National Kidney Foundation (NKF). Their artwork has been exhibited at venues including The Virginia Museum of History and Culture, Second Street Gallery and New City Arts Initiative. Through their art and advocacy, Jess explores the intersections of art and health, bringing a unique perspective to their creative practice.

As an artist and scholar, you study psychoneuroimmunology—the connection between the mind, immune system, and health. Have you found parallels between this field and the role art plays in healing?

I believe that leaning into creativity was essential to my healing journey, and I will continue to practice as an artist for the benefit of my health for the same reasons I regularly see a therapist or a dentist or a nephrologist. The more I look into it, the more convinced I become that art and health are inseparable from one another.

In the months before I found out my kidneys were failing, I was going through a difficult divorce and subsequent loss of most of my support system. I was houseless for several weeks, moving between cities, starting a new job, and preparing for my first term at graduate school, the culmination of which had me more stressed than I had ever been. Even though the progression of my kidney disease was inevitable, I believe with every fiber of my being that the circumstances of that transitional period of my life and the strain it put on my cardiovascular system expedited the ensuing failure of my kidneys. In 2020 I read the book What is Health? Allostasis and the Evolution of Human Design by Peter Sterling, a neuroscientist, and I feel like it articulated scientifically what I had felt implicitly in my experience of kidney failure and transplant. Sterling draws on the connections between strenuous environmental and socioeconomic factors and high blood pressure. He also describes the ways that humans are neurologically “programmed” to make and experience art as a quintessential aspect of our being. Art is at the heart of human connection; it’s how we express stories, share ideas, and commune with one another as social creatures.

You use your art to advocate for disability rights and health equity. How do you balance personal storytelling with activism in your creative work?

I use my story as the starting point for my activism and advocacy in an effort to introduce my audiences to a “real” person who is impacted by the statistics or policies that I am introducing around disability rights and health equity. I make art that uses visuals to articulate what I have experienced or lived through in an engaging way. I have found that leading with vulnerability makes my work more meaningful and more approachable to others. I think that by being open and transparent about the complexities of my experiences, I am able to reflect the complexities and “grey areas” of life that we socially tend to make black and white. 

I try not to take for granted that, without the help of modern medicine, I would have ceased to exist somewhere near the end of 2018. The time that I’ve been given since receiving a kidney transplant feels like a “bonus life.” An unprecedented gift that I have a powerful motivation to make good use of. I would not say that I am fearless, but it is certainly fair to say that the things that I was afraid of in the “before” are not the same things that I am afraid of now, and that shift has granted me the freedom to share my personal story, as I lived it, without much fear of the repercussions. I have experienced and witnessed countless forms of injustice and ongoing inequities in the healthcare system, and I make art to articulate what I have seen. When the truth is not what people want to hear, telling that truth will often be rebranded as “activism,” which is why I do not shy away from identifying as an “activist” when I share my truth. I’ll leave the balancing of that to my audience.

You often incorporate ASL (American Sign Language) into your work. How does movement and language shape the way you create and communicate through art?

I was late-deafened, which means that my deafness did not progress until I was an adolescent and had already acquired spoken language. As such, my audiologists and physicians did not encourage me or my parents to learn ASL and I was never exposed to Deaf people or Deaf culture as a young person. I did not meet another Deaf person or begin learning ASL until I was in college and it was offered as credit toward my foreign language requirement for my degree. I continue to be grateful that I had any exposure at all because coming into my Deaf identity and exposing myself to ASL and Deaf Culture has been incredibly transformative for me. In a lot of ways, I feel like those years between my diagnosis and my first ASL class in college were a missed opportunity, and I continue to grieve that loss. Sometimes I wonder if I would have been motivated to seek out ASL sooner if I had seen it more widely represented in tv, movies, or visual art, and I think I incorporate gesture, movement and ASL into my work as a way of putting it “out there” for my younger self, and for others like me who might be experiencing some level of language deprivation.

You emphasize “radical visibility” in your art. Why is visibility so important, and how does it challenge societal perceptions of disability and chronic illness?

A lot of folks have preconceived notions about what a Deaf person or an Autistic person or a Disabled person “looks like” or is capable of doing. They tend to underestimate our abilities and our contributions to the world. I think certain disabilities or illnesses remind us of our mortality and become socially taboo to discuss, look at, or make art about. To me, “radical visibility” is centering those aspects of the human experience that would be omitted from view.  

When we picture someone on life support with a catheter in their abdomen, do we imagine them smiling or dancing? Probably not. Where would we have been exposed to such an image if being on “life support” immediately prompts a scene of someone laying sickly in a hospital bed. I have plenty of images of me looking sickly in a hospital bed, but that’s only a fraction of my story. I also smiled. I also danced and performed in a company production. I laughed. I played. There are moments of delights among the disparities, and those are the moments I want to feature in my work. I want to challenge negative perceptions of disability and chronic illness and find ways to articulate the universality of these experiences. The statistics say that 1 in 4 people in the U.S. are disabled, but how many of us are on the cover of magazines or cast as the protagonist of a blockbuster film, featured as a subject in a painting? The lack of portrayals of these perspectives speaks for itself, and I think by generating art that centers disabled, neurodivergent, and chronically ill experiences adds to the collective chorus of creative works seeking to articulate what it means to be human.

Your documentary The Art of Our Scars earned you a New City Arts Initiative Spring 2022 SOUP grant, which allowed you to reunite with a childhood friend and kidney donor. Where did you get the ideas for the film, and will you share a little about that reunion - it must have been a powerful, personal moment.

I never pictured myself as a filmmaker, but The Art of Our Scars felt like a necessary film to make. In 2018 when my kidneys failed and I was using dialysis to stay alive, it became apparent to me that a lot of folks were woefully ignorant about dialysis, transplant, and kidney health in general. Frankly, I got tired of explaining what peritoneal dialysis was to everyone I met, so I walked into a local filmmakers club meeting one day, lifted my shirt to show the catheter in my abdomen, and essentially asked “who wants to tell this story?” I’m forever grateful that my co-producer Zach Keifer took me up on it and started bringing his camera along for the ride. 

A few months after I started dialysis, I found out that my childhood friend, Charles Nichols was a match for me and in December 2018 we had simultaneous surgeries at UVA so I could indefinitely borrow one of his kidneys. Charles lives in Chicago, so we don’t get to see each other very often and, when the pandemic hit in 2020 it put a huge halt on our progress with the film since I am immunocompromised and traveling was out of the question for quite some time. However, in 2022 when we had vaccines and some treatments available for COVID, it felt like the right time to try to reconnect and the SOUP grant made it possible. Our reunion was pretty emotional. The last time that Charles had seen me I was barely 100lbs, on a very restricted diet, and very very sick. So, to see me at a healthy body weight, with an abundance of energy, and the ability to eat (almost) anything I wanted was a drastic difference for him. He relished in getting us a Chicago-style deep dish pizza from his favorite restaurant. We admired each other’s kidney-themed tattoos, and I got to meet his son for the first time. The project was financially sponsored by a local nonprofit Docs In Progress.

While visiting, I also brought out my harddrive to share some of the footage we’d captured from our transplant surgeries and we were able to sort of relive the experience together. There was a fair bit of crying, but the good kind because we both know how fortunate we were to have such positive outcomes. Kidney transplant is a miracle. Having another human’s organ in my body is a miracle and it’s hard not to be in awe of some of the particulars of that process when you’ve been a part of it. Charles and I have a very special bond, and I am so glad we were able to capture some of those moments of reuniting and reminiscing to share with the audiences who see our film.

In what ways does being Deaf, disabled, and neurodivergent influence how you see and express the world through your art?

Each of these aspects of myself very literally impact how my brain is “wired”, and ultimately how I perceive the world around me. 

I am autistic and can easily recognize patterns, which influences my thinking process of how things fit together in whatever I am creating. My abundant curiosity and special interests (e.g. human behavior/psychology, evolution, ethics, linguistics, anatomy, neurology, astronomy, astrology, thanatology, graphic medicine, Appalachian flora & fauna, etc.) are often reflected in my work. I identify as a “mixed media” artist because I have ADHD and am perpetually exposing myself to different modes of making or articulating an idea. ADHD is also why I have piles of abandoned projects and an eclectic studio space with a myriad of tools and supplies. 

My lived intersectional experiences as a Deaf, disabled, and neurodivergent person also impact how I collaborate with others, how I present my work, and how I navigate the world as an artist, advocate, and scholar. I approach my projects with accessibility at the forefront of my planning rather than as an afterthought because I know what it feels like to be left out of the conversation or uninvited to the table, and I want my work, my exhibitions, and my events to be more inclusive than what I have been exposed to myself. My disabilities require me to advocate for my own accessibility needs in every situation I encounter, which often feels like a part-time job unto itself. I am immunocompromised and wear masks. I am Deaf and require closed captions and ASL interpreters. I have long-COVID and experience chronic migraines and bouts of fatigue that make my capacity fluctuate and my schedule irregular. All of these factors and more that I did not list for the sake of brevity impact my ability to work and influence what my work is about.

In your art, you work with repurposed materials. How do they influence the content of your work? Do they ever change your initial ideas, based on what you find? 

My collage works in particular have a mind of their own; they almost always deviate in some way from whatever initial concept I wanted to manifest. A collage may begin with certain specific elements in mind, but the way the glue behaves, how the paper textures interact, and other unpredictable factors of working with random materials ultimately move the work in its own direction. I have learned to be flexible and open to how things flow in the process. 

Contextually, I lean toward repurposed materials for a lot of reasons. I am a nostalgic person and find meaning in mundane objects, which I enjoy incorporating into my work. I appreciate that using second-hand things diverts them from becoming trash. Part of me also gets a bit of a kick out of making something of value by bringing broken or underappreciated things into a different light, which reflects my belief in the value of disabled perspectives in a social ethos that has historically underappreciated our contributions. 

Jess ⎯ before we let you go, will you share with us a few of your favorite places to stay, eat, shop and play across Virginia? 

I love a good day trip, and there’s a lot of good ones in Virginia. One of my favorites is Warms Springs where you can “take the waters” in a natural hot spring. There’s also some great hiking trails in the area and it's a really beautiful drive through the George Washington National Forest. Staunton is along the route to Warm Springs from Charlottesville, and I like to stop by Kathy’s Restaurant for breakfast on the way (they have great pancakes) and then grab a flat white for the road from Crucible Coffee Roasters. The last time I visited Warm Springs, I thoroughly enjoyed my stay at The Inn at Gristmill Square. 

I love driving out to Fort Monroe in Hampton, VA. The beach is in the Chesapeake Bay and is abundant with wildlife; I’ve seen herons, dolphins, skates, jellies, hermit crabs, and all sorts of fish while visiting. The exit for Fort Monroe is also before the Hampton Roads Bridge Tunnel, so there’s minimal traffic and no chance of getting stuck on the other side. There’s a lot of hole-in-the-wall seafood spots in the area, but my go-to is Graham & Rollins, Inc. for blue crabs when they’re in season. One of my favorite nature reserves, The Virginia Living Museum is also right off 64 between Charlottesville and the Hampton Roads area and I like to stop by sometimes to say hello to the critters. 

As much as I enjoy travel, I am much more of a hermit-homebody and would be remiss if I didn’t shout out some of the spots where I have become a regular, and whose owners are fabulous humans in my community who sustain me. I feel like I owe an abundance of my health and mental well-being to Julie Vu Whitaker at Vu Noodles and her *MAGICAL* vegan pho, and PK Ross at Splendora’s Gelato for every time I “need a little treat,” but especially for having un-boring sorbetto flavors when I wasn’t allowed dairy or most kinds of treats because of broken kidneys. Also, the recent (Fall 2023) addition of The Beautiful Idea has been a beacon of support to my research, my art, and my sense of belonging in a town that felt very isolating for a very long time; I am exceedingly grateful to the folks who brought The Beautiful Idea to life and I default to their store whenever I need gifts, books, stickers, or good company.

Be sure and connect with Jess Walters through their various channels:

Email [email protected] 

LinkTree https://linktr.ee/jesswaltersart 

Website www.jesswaltersart.com

Instagram https://www.instagram.com/jesswaltersart