Justus Harris, type 1 diabetes since age 14, is a graduate and portfolio evaluator for the School of the Art Institute of Chicago, internationally exhibiting artist and technologist passionate about 3D printed sculpture and data visualization for both education and inspiration. We refer to him as the “King of Glucose Data Sculpture,” because of course he is unique in this artistic arena!

He’s come a long way, and gained a lot of inspiration, since then. So today, he provides this update, complete with gorgeous art gallery.

Since I was diagnosed over a decade ago with T1D, no matter how much time I have spent with charts and graphs of my blood glucose data, I have never felt that it was a natural way for me to understand my diabetes. In particular it was hard for me to remember my health over time as pages of information that were stored in the computer. As an artist, I began rethinking what other ways that personal diabetes information could be understood and remembered by creating Diabetes Data Sculptures, which use data modeling and 3D printing to translate a months worth of personal diabetes data into a customizable tactile sculpture. Through creative transformations instead of looking a charts and graphs, blood glucose trends can be felt and seen as a tangible object in the palm of your hand.

Thanks to Amy T here at the ‘Mine and Manny Hernandez I had the great opportunity to share my art at the DiabetesMine events at Stanford this past fall. Amy’s initiative to bring design to the world of diabetes has truly changed the face of diabetes innovation. There was a tremendous benefit at DiabetesMine Innovation Summit and D-Data ExChange that came from bringing together people from many disciplines (Bill Polonksy’s collaborative design session from the conference is a testament to this).

I want to continue sharing the value of art I have seen since the conference and how it can help those with diabetes. I am inspired to outlines in greater detail how art can be used in personal health understanding and empowerment.

Diabetes Data Sculptures: Origins and Inspirations

For me there was no way that felt natural to understand my personal experience with diabetes with traditional tools. Diabetes Data Sculptures are my way of using art to document and better understand my diabetes data. I took thousands of blood glucose readings and translated them into tactile forms as data over days weeks and months in a compact handheld form.

To do this, I draw on nature and scientific history. I was inspired by 19th century artist and scientist Ernst Haeckel’s drawings of beautiful microscopic organisms called radiolaria featured in his Kunstformen der Natur [Art Forms in Nature, 1899-1904].

Haeckel elegantly documented radiolaria through his art rather than scientific instruments because there were no photographic devices that could capture radiolaria, which rapidly decomposed after being collected from the ocean. The process of making art allows for the combination of many inspirations such as sculpture and science in the case of diabetes data sculptures.

I created a life-sized portrait series of early Diabetes Data Sculpture participants, with inversed color images of similarly formed radiolaria around their medical devices and the parts of the body from which their data was recorded.

Visceral Data Portraits excerpt, inkjet prints 30” x 40”, 2015

Since the DiabetesMine conference, I have been motivated to share my work with younger people living with diabetes because of their natural creativity and my hope that the arts could bring something new to how they see diabetes. This past spring I led an art and technology event for over 15 families at the Diabetes Youth Family (DYF) camp in Livermore, CA. I used a 3D printer and existing examples of sculptures that campers could customize and also draw sketches for brainstorming new forms to translate their diabetes data. When people are newly diagnosed it is a pivotal time when beliefs and thoughts around our bodies and health are established and I wanted to add artistic tools to the mix for campers.

What I was struck by most was that even campers who understood their diabetes data said they wanted different ways to think about and view their diabetes. One camper and his father said, “Having a creative way to look at diabetes makes it more about seeing how diabetes works rather than making people feel guilty for every time they are out of range and have a low or high number.”

And little Madeline Salafsky, a nine-year-old camper, commented that, the sculptures “show how diabetes is like nature, full of change and filled with ups and downs. Like mountain peaks and valleys, like lengths of grass growing from the ground… like a fish’s zigzagging scales.”

Just like some people speak two languages to communicate, these sculptures are another language for diabetes. It is good to have another way to talk about diabetes too!

Unique Value of Art, Inspired by Toni Gentilli

The tangible and visual language of color, form, and shape is more pleasurable and memorable than numbers for me. There are many opportunities for more creative approaches for understanding one’s health. In order to expand on the role of art for someone living with diabetes I interviewed Toni Gentilli a visual artist, curator, and former archaeologist living with T1D.

Toni and I met at the Compound Gallery in Oakland where I make my 3D printed sculptures and where she is one of the curators and studio artists. Toni is also trained as a scientist, holding both undergraduate and graduate degrees in anthropology in addition to her Master’s in fine art from the San Francisco Art Institute.

Like Madeline, Toni believes that although diabetes can be extremely challenging, it is part of nature. Art does not remove the hassle that comes with managing diabetes, but it does provide a different, perhaps more positive way to look at T1D. Her art work embraces genetic mutation not as something to be ashamed of, but accepted as a natural element of human biology.

Installation of Ouroboros (left), Transplant (center), and Transmutation Series (right), Toni Gentilli 2013

We agreed that one of the things that art and science share in common is intense observation of a subject. In art the approach to exploring a given subject is malleable and can happen sporadically over years. In science, observation is conducted in a more rigid fashion using the scientific method often within the constraints of research deadlines and limited budgets. After nearly 15 years of being an archaeologist contracting with various municipal, state, and federal land-managing agencies, Toni made the decision to become a full-time artist to more freely explore the subjects that have long interested her, such as the anthropology of art, the importance of material culture in human consciousness, and the influence of technology on perception.

Toni and I used our conversation for determining some of the unique opportunities that art has to offer, many of which were previously unavailable to Toni when working professionally as a scientist. She explained to me that one of the unique values of conducting research as an artist in contrast to scientific research is that she has complete ownership of her process. She sets her own boundaries on a project to purposefully provide limitations, but still allows for the unexpected to influence her creative decisions. Transmutations reveals the normally invisible interaction of synthetic insulins Toni uses and their unique interactions with her blood. The blood and insulin were composed in petri dishes and transformed into large prints using silver gelatin processing.

Petri dish with blood and synthetic insulin (left), Transmutations excerpt, gold-toned silver gelatin print, 16” x 16”, 2012-2013 (right)

Metaphors and Symbolism to Simplify Complex Subjects

Toni’s work Transplant is inspired by photosynthesis, the plant equivalent of turning carbohydrates into fuel, a process that no longer works for those with T1D. She uses a unique photographic process called chlorophyll printing to expose hand-drawn negatives of islet cells (insulin cells producing cells the body destroys for those with T1D) onto the leaves of nasturtium plants.

Installation detail of Transplant, (left), Islet cell chlorophyll printed on nasturtium plant, 2013 (right)

Toni says people who do not understand how diabetes works actually “get it” when they realize that it is like other processes in nature. For example, we all learn as children that plants use chlorophyll to convert sunlight into sugar. Toni’s art shows us that we have our own version of this process inside our bodies with the pancreas and insulin.

Art Can Make the Unexpected Enriching

In her Photo-synthesis series, Toni created her own version of an historic photographic process for making life-sized portraits of herself, some of which include a year’s worth of her diabetes supplies. She rolled out large pieces of paper treated with cyanotype (a UV-light sensitive photochemical) and positioned her body with the diabetes supplies on the paper, which was then exposed by the sun.

She described the process of doing this outside of her studio space and how she also included various plants in some of the photographs, making the initial connection between diabetes and photosynthesis. In one particular photograph, she incorporated some of the wild blackberry vines growing near where she was working. She had not intentionally chosen them as a metaphor for her diabetes supplies, but when she felt their sharp spines and saw their bright blood red color transferred onto the photo, she realized they were a natural form that mirrored the syringes she used for injections and the blood she draws for glucose testing. The image again puts diabetes alongside nature, the human body, and medical supplies in a way that makes it all seem more connected. What I love about this piece is it puts the physical components of diabetes management into one beautiful image without the cold clinical perspective that is so common.

Photo-synthesis series excerpt 2012, cyanotype photogram and diabetes supplies on cotton rag paper 76” x 36” (left), and cyanotype photogram and wild blackberries on cotton rag paper 72″ x 36″ (right)

Translating Diabetes Through Art

I am blown away by the diabetes innovation with a renewed focus on design fostered by Amy T through DiabetesMine and others in the community such as Joyce Lee and Sara Krugman. I am motivated to bring art, which is an often overlapping discipline, to the forefront as a tool to help those living with diabetes. I am also inspired by organizations like The Betes that recognize the positive impact that the performing arts can have to help people with chronic illnesses process their experiences creatively.

As an arts educator and portfolio evaluator with the School of the Art Institute of Chicago, I am constantly amazed by the work of a new generation of artists. Art is a place where the knowledge of many disciplines can converge and provide a resource for people facing very real challenges.

When I asked Toni for a few words of advice for a young artist, she said, “Don’t let fear get in your way of being an artist, fear of not knowing enough, and fear of what people will think.” Toni herself refrained from identifying herself as an artist for many years because she thought you needed to be an expert in everything about your craft. Through her work, however, and living with diabetes, she realized risk-taking and experimentation are just as valuable to being an artist as technical mastery.

I would also advise people with diabetes to live without fear when possible. It can be overwhelming until you pick a place to start and in a way that makes sense to you. I continue using my art to develop Diabetes Data Sculpture and to make data easier to understand. This has led me to collaborations with people from many disciplines, most recently through UCSF’s Entrepreneurship Center, where I led a team comprising a neuroscientist, data scientist, clinician, and medical researcher on further developing diabetes data visualizations. These are few of many examples that I hope to share for expanding the ways we can consider the role of creativity in understanding and managing the experience of illness.

{Special thanks to the DYF camp staff and volunteers including Ankit Agrawal, Sara Krugman, and Type A Machines 3D printing company as well as all the campers and families who we were able to collaborate with and learn from. For more of Toni Gentilli’s work visit tonigentilli.com}

Thank you for helping to make diabetes beautiful, Justus!