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Published January 18, 2024

In 2018, at the age of 29, Jess Walters (they/them) finally faced the experience they had been dreading since their youth: kidney failure. 

Jess has Alport Syndrome, a rare genetic condition characterized by kidney disease, loss of hearing, and eye abnormalities. “It’s difficult to have an accurate prognosis,” they said. “My doctors just told me my kidneys would probably fail before I turned 40.”  

Jess, seated outside the Virginia Museum of History & Culture, in November 2022. Photo by Nina Wilder/Virginia Humanities

Countless friends, family members, and even acquaintances graciously stepped forward to be a living donor after Jess decided to pursue transplantation, and one proved to be a match; now, Jess has one of his kidneys in their body, sustaining their life. 

“Almost dying teaches you a lot about how to live,” Jess remarked. “It radically shifted my perspective.”  

Jess dove headfirst into health advocacy and hasn’t looked back. Now, they are widening the scope of their work as an inaugural Virginia Health Equity & Justice Fellow. Supported by UVA Center for Health Humanities & Ethics, UVA Health’s Office for Diversity & Community Engagement, and Virginia Humanities, the fellowship supports scholars, artists, and clinicians whose work centers the arts and humanities to advance health equity. 

“Creativity is quintessential to humanity,” Jess said. “A lot of what I do is sort of translating that, and encouraging others to tap into the creativity that they may have been discouraged to pursue.” 

A young person wearing a plaid newsboy hat, a pink face mask, and a floral shirt chats with a person whose back is turned to the camera
Jess chats with Sue Perdue, director of grants and fellowships at Virginia Humanities, in November 2022. Photo by Nina Wilder/Virginia Humanities

As a disabled, queer, and chronically ill person, Jess is intimately familiar with how often social injustices are perpetuated on both interpersonal and structural levels, and how that can negatively impact patient outcomes within the healthcare system. 

“I was misdiagnosed a lot in my young years, and I think a lot of who I am today is shaped by those experiences, and how difficult it is to come by knowledge of wellness,” Jess shared. “I’ve had to adapt, I’ve had to self-advocate, I’ve had to be incredibly resilient, curious, and open to change. But I also have privilege that I hope to use as a platform for others.” 

Jess intends to use the fellowship period—around a year and a half—to focus on accessibility accommodations in creative spaces across Charlottesville—spaces that offer free, public performances, exhibits, workshops, and more, but still feature physical barriers that exclude a sizable population of the community they serve. 

“For a long time, I stopped going to the movie theater because I got really annoyed at the limitations of closed captioning devices,” they shared. “A lot of them are physically uncomfortable. Half of the time, they don’t work. People don’t understand the gravitas of dehumanization that occurs in that moment.”

“When disabled and chronically ill perspectives are excluded because of physical and social barriers, we are all at a loss.”

Jess Walters, 2023–24 Virginia Health Equity & Justice Fellow

Since December 2022, Jess has served as vice chair on the board of The Bridge Progressive Arts Initiative, a creative center that provides financial resources, workspaces, and collaborative opportunities to empower the greater Charlottesville community. They’ve also worked part time at both Second Street Gallery and New City Arts. The executive directors at all three organizations, Jess said, support their initiatives, like providing ASL interpreters at artist talks, using image description text on websites and social media posts, and developing workshops around disability justice. 

Digital photograph of cupped hands holding a wool-felted kidney sculpture
“Love Can Be Felt” by Jess Walters. The model holding the wool-felted kidney sculpture is also a chronic kidney disease patient. Photo by Jess Walters

“When disabled and chronically ill perspectives are excluded because of physical and social barriers, we are all at a loss. Because disabled and chronically ill folks are some of the most creative, innovative, and experienced people I know,” Jess said. “And it sucks that the biggest thing we have in common is that we don’t feel accepted in society.”

As Jess cheekily points out, the Americans with Disabilities Act (ADA) is younger than they are; the civil rights law was enacted in 1990. Progress, especially at the structural level, is slow, but they believe that more opportunities for abled and disabled people to connect and understand one another will naturally create a better community within Charlottesville.

“Someday, I want hearing people to come to a Deaf poetry slam at The Bridge and expose themselves to something different,” they said. “And encourage them, too; maybe they’ll take a sign language class afterward. …  The more strides we make to adopt inclusive practices, the more inclusive the world becomes. I hope, at least, I can help push the first domino.” 

Virginia Humanities Fellowships

Our fellowship programs help writers, community scholars, educators, and university faculty members uncover stories about Virginia’s history and culture.

Vanessa Adkins, right, is apprenticing under her cousin Jessica Canaday Stewart learning the finer points of traditional Chickahominy dancing. Photos taken at the Fall Festival and Pow Wow in Charles City on Saturday, Sept. 22, 2012.

Our work brings people together and honors our shared humanity.

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