By Jennifer Roche, guest contributor
Multidisciplinary artist Justus Harris has a front-row seat to how interconnected our bodies and technology are becoming: he has insulin dependent diabetes and will soon begin using an artificial pancreas. His experiences living with diabetes inform and permeate his art, and they’ve led him to collaborate with physicians, patients, and medical researchers. To create his "Diabetes Data" sculptures, a series of 3D-printed pieces, he worked with individual patients to conceptualize sculptural forms based on a month’s worth of their insulin and blood glucose level data. In his new work, Fountains, which is due to open this month as part of Tech Open Air Berlin, Harris created an installation that merges open water data, body scans, interviews, and 3D imaging to investigate ideas about water pollution, memory, and location. The work, created with mathematician Eric Dolores, won the Environment + Data category for the show, “Adaptation.” This exhibit seeks to build bridges among the public, artists, and technologies. Harris’s work has also been featured at the Stanford School of Medicine, Theorizing the Web NYC, and this fall he will be in residence at a new innovation center for prototyping in Chicago called mHUB. He studied at the School of the Art Institute of Chicago and Univeristät der Künste in Berlin. Harris lives and works in Chicago.
Jennifer Roche, SciArt Magazine: Your work to date draws from not only your training as an artist but also as someone who lives with diabetes. How did you come to understand and integrate your experiences as a patient with your art?
Justus Harris: After graduating from college, I had a period of about six months of intense depression and most of it was connected to feeling like I didn’t understand my health any better than I did when I was a teenager. It was as if I had gotten an education in creative thinking and aesthetics, yet had missed the most important subject to grow in and that was the mastery and understanding of my own body. My approach to educating myself on my body after school was to enroll in as many medical studies I could find on diabetes including cardiac, sleep, anxiety, and eventually artificial pancreas studies. Through hours of talking with researchers, being tested, and providing feedback, I gained a sense of great empowerment. Through this process I realized two things: one, I knew much more about my health than I realized and my knowledge was valuable to the researchers and two, I actually excelled in figuring out how the many facets of how my diabetes works. This in retrospect made me recall an early memory right after being diagnosed with diabetes at 14 where I was actually fascinated by the process of my own treatment rather than nervous. I realized that I have an aptitude and desire to understand how the body is cared for that predated my professional art training. With this realization I began combining my two passions together with the goal of using my own life as a subject of my artwork and prototype for the future of medical treatment. Most of the topics I’m interested in loop back into diabetes, but you might not see it on the surface. With Fountains, the project I am completing for the “Adaptation” exhibit in Berlin, you don’t see diabetes at all. But a lot of the concepts of “how do I understand what’s happening to me that’s invisible unless I monitor and visualize it” are present in the work.
JR: Can you share more about your project in Berlin? For instance, given the opportunity to create an interactive piece, what were some of the ideas and decisions that guided you in realizing this work?
JH: The work in Berlin is a storytelling project at its core and uses multiple strategies to convey the topic of water as a vital and fragile resource to viewers. I’ve interviewed people around the world - some people in person and others remotely who are affected by water pollution, drought, or who are concerned about the future of it as a resource. Originally, my plan was to take their interview and composite it with their 3D scanned body, where the surface of their skin would be the surface for visualizing the pollution data from the water source where they live. As I’ve continued and interviewed water scientists, environmental lawyers, and expert citizens, I realized that much of the municipal reports on water data created for consumers provide just a small picture of the state of the drinking water. I realized that these reports were not a good source of data, so this changed the way our strategy for using data with the ‘Internet of Things’ device we were given by the exhibition organizers. This IoT gateway can pull data from various online sources so fortunately we had the flexibility to modify our process. The municipal reports became instead a supplemental guide to the stories that we gathered directly from individuals across the world. Their personal stories are animated based on where each person lives, such as Berlin, Oakland, or Flint. We are drawing data, also, directly from the USGS real-time monitors for the sound score, working with musician and coder René Paccha. This is an exciting element where we are bridging the conceptual components in the Chicago region of the measurement in Lake Michigan of turbidity, which is the cloudiness of water and an indicator of pollution, with sound. Every 15 minutes the sound in the installation will be updated with live data pulled from the USGS survey sensors. All of the data collection, sound manipulation, and output to speakers will use the AGILE IoT gateway. In the future version of this work we plan to include real-time water sensors strategically placed in areas that lack sufficient monitoring.
JR: It sounds like the work will have a life beyond the installation?
JH: Right now there is data I would like to show that doesn’t exist. So, my goal is to fill an existing gap in the science moving forward.
I would like to begin using real-time data from individuals’ drinking water from their tap to get closer to what’s going on. I plan to work with people who are experts on this, some who I consider expert citizens just as I consider myself an expert patient. Through my conversations with expert citizens like Melissa Mays, an activist in Flint, Michigan, who started wateryoufightingfor.com, I’ve gained ideas of what would be useful to monitor in real time. Mays said that it is important to monitor chlorine levels because she would know a low level of chlorine means there is also probably a high level of bacteria. That’s the kind of data where not only can the data be visualized but also it serves a function to individuals monitoring their own in-house, personal water. I would like to partner with federal organizations, environmental sensor manufacturers, and communities in the Great Lakes region to begin filling this science gap. There is a clear route I see building on this exhibition working with AGILE and IoT technologies. It involves getting people sensors in their home with the goal to create new understanding and actions that can be taken based on the data. The Great Lakes region, which I live in, is a very significant region. Twenty percent of the world’s water comes from this region and yet there are water crises here that make it clear we can’t take this resource for granted; understanding when, why, and how water becomes contaminated is necessary to protect our own health and to be stewards of our environment. Through the art component, I’d like to increase the ability for people to conceptualize and grasp data as a new way to understand what’s going on.
JR: You seem uniquely suited to investigating SciArt dialogues. In other work, you collaborate with physicians and researchers. What are some of the most rewarding aspects or possibilities you see of working as an artist in the midst of the medical realm? What have some of your collaborations looked like so far?
JH: My collaborations have been in multiple forms that don’t always fit neatly into the art category. For example, I have been a participant at the University of Chicago’s artificial pancreas medical trials four times, each requiring me to spend 72 hours with the research doctors and engineers. Based on our discussions and my feedback both verbal and physical, they modify their algorithms. I also record our conversations, take the data they collect, and was actually inspired by my time during these studies to make my diabetes data sculptures. In collaboration with Dr. Elizabeth Littlejohn, endocrinologist and researcher at University of Chicago (she will be transitioning to University of Michigan this summer), and another artificial pancreas study participant, we have written a patient perspective paper on the psychological aspects of trust and participant collaboration in a research setting. Dr. Littlejohn and I wrote a full protocol for evaluating my diabetes data sculptures in a clinical setting so in this way working with collaborators of different disciplines can change the entire context of the art I make from the intention to have my work in a gallery to a doctor’s office.
JR: You also serve as an “expert patient.” Can you elaborate about what this means?
JH: The first time I heard this term was through Stanford University who does a conference every year called “Medicine X.” They invite patient scholars to speak and present their unique expertise to medical professionals. To be clear, I’m not a Stanford expert patient yet, I am an expert patient based on the definition of the term. I believe this term is needed to give agency and credit to people personally affected by and mastering chronic conditions. It embodies the idea that you need to be your own doctor and recognize that you know your health with great detail and intimacy because you’re with it 24/7. This concept emerged in my current work Fountains with my discussions with Melissa Mays, who, like me with my diabetes, has become an expert by necessity in her field of understanding. She knows what is important to look out for in her drinking water and how to protect her life and also her rights. Individual necessity is a powerful foundation for expertise. In the best of circumstances trained experts collaborate with expert citizens and patients to solve challenges that go beyond the lab.