A Matter of Translation: Explaining Chronic Illness through Art

Designer Justus Harris is transforming the way people view health data and communicate chronic conditions.

Living with chronic pain poses challenges that go far beyond the particulars of the illness. The “dis-ease” in disease is emotional and social as well as physical, and is intensely personal. Yet the state of our health – both as individuals and as societies – is all too often reduced to graphs and charts, to data points and lab results.

Justus Harris has another approach. He wants us to understand illness outside of the body, to be able to relate to it in a different way. He believes that art can not only help those suffering but also that it has potential to heal healers.

In a TEDx talk presented at Wake Forest University in early 2020, Justus said, “The role of the artist isn’t only to make things more beautiful in our society, but it’s also to go into places where the absence of connection and the absence of imagination are the most profound.” For many, that absence manifests itself most profoundly in the doctor’s office. Justus’s work attempts to change that.

 

Taking Ownership of Disease

Justus grew up in Winston-Salem, North Carolina, where one of his earliest memories is of a beloved uncle dying of AIDS. “I was visiting my grandparents, and he invited me and my sister to come sit on the bed with him while he took IV fluids,” he recalls. Justus was only 7 years old when his uncle died. That experience informed how he views illness today.

“In retrospect, I understand that I didn’t view him as sick because no one had taught me to define his life that way. His life was 100% powerful and unique during the last years he was living with AIDS that we shared on this planet,” says Justus.

Then, at age 14, Justus was diagnosed with type 1 diabetes. It was a life-transforming diagnosis in more ways than one. “I realized that this was the moment to take control of my life.”

Justus was already interested in medicine. In middle school, he thought he might become a doctor. So when he was diagnosed, he decided that he was going to be his own doctor.

“I treated diabetes like a class. I made it my own experience, my own journey. I took ownership of it.”

Justus did not become a doctor. He became an artist. But he still has a keen interest in medicine and healing – and in particular, the healing power of art. Rather than practicing medicine to heal illness, he practices art to help transform the way illness is experienced and communicated.

 

Enter MedSculp and Transforming Health Data into Art

Justus, who is now 30 years old and lives in Chicago, designs 3-D educational tools that visually explain diabetes and other chronic health conditions through his company, MedSculp. As the founder, creative director, and technologist for MedSculp, Justus and his team work to create patient-centered artworks that inspire people to learn more about their bodies and chronic illness without stigma. 

Essentially, MedSculp translates data that describe a person’s health status into colors, forms, and shapes that someone can see and touch. Their first project was a Diabetes Data Sculpture, which used thousands of data points from continuous glucose monitors over a 1-month period to craft a concise digital visualization that can be held as in the palm of one’s hand.These 3D shapes include spikes representing blood sugar highs and dips representing lows – each explorable with the tip of a finger. (See images below)

A look at some of the diabetes sculptures made by MedSculp and the data they portray.

 

A demonstration of how the diabetes sculpture captures health data points.

MedSculp's data visualizations have been featured by Stanford Medicine, The Kennedy Center, the American Diabetes Association, and more. Some of the company's hand-held visualizations contain as many as 2,000 data points.

"What I am trying to accomplish at its core,” he says, “is to communicate health in a non-stigmatizing way, in a person-to-person way.”

For Justus, the need to communicate health beyond data is especially urgent in this moment. “The issue is coming to a head with COVID and the striking racial disparities in health and healthcare that have been highlighted in the United States,” he says.

He recommends following the work of fellow Kennedy Center Citizen Artists: artist and technologist Ekene Iejoma, poet and educator Donney Rose, and pioneer of data visualization and sociology scholarship W.E.B. Du Bois's Data Portraits: Visualizing Black America, for examples of public health data visualization that are urgent to understand and share at this time.

 

Justus' Time Untold exhibit, featured at the Kennedy Center, helped people visualize life expectancy and racial and socioeconomic disparities in those life expectancies.

The Time Untold installation and the Kennedy Center Arts Summit in 2019.

 

Tactile Representations of Pain and Illness

In terms of why data-based sculptures may help, it is important to understand that chronic illness is often difficult for outsiders to see, much less understand. No one can see someone’s pain or blood sugar levels. And the details of illness ­­– whether it be glucose, cholesterol, or numbers on a pain scale ­– are often abstract and alien even for even the person whose name is at the top of the medical record.

Justus’s work shows how to make the invisible visible. It translates often-arcane terminology and medical mathematics of into visual, tactile objects that we can see and touch.

With Justus’s art objects, those living with chronic illness may be able to interpret or visualize their condition in a way that is not accessible from data on a medical chart. And this, in turn, gives them more of an individualized and accessible relationship with their health.

Healthcare providers can use these tools as well to help communicate with patients about their illnesses and what they are experiencing.

 

Art as a Mother Tongue

Too often, we think of medicine and art as two vastly different worlds. Science and art are taught on different sides of the campus, pursued by different types of people. Yet, we all have health and we all are creative. In many ways, Justus’s work – and those of other artists trying to destigmatize pain and chronic illness – can teach us how to speak each other’s languages.

“I lived in Berlin for a while,” shares Justus. “When I hold the object [I created to represent my own health], I feel like I’ve been living in a foreign country, talking about life in a language I don’t know well. Now I’m speaking about my life in my mother tongue.”

For all too many individuals, health data and communications with doctors can sound like an unfamiliar language. What Justus Harris envisions is a new and deeply personal way to make the translation.

 

For More

All images herein provided by Justus Harris.

Updated on: 07/31/20
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