7 Creatives Who Are Changing The Narrative of Illness

Co-authored by Catherine Monahon

Inspired by Medicine X: a conference focused on patient-centered health

This past March I was selected to attend Stanford University’s Medicine X conference as an ePatient. At the conference, patients, healthcare professionals and multi-disciplinary innovators gather to discuss pressing issues related to healthcare. Medicine X focuses on implementing patient centered design, utilizing cutting edge technology and cross-pollinating disciplines. The conference has been described as “the world’s leading patient-centered health tech conference.”

In getting ready for the conference, I have discovered avenues of technology I do not usually frequent. As an ePatient delegate I have been encouraged to expand my limited knowledge of social media. Before, during and after the conference, many people connect over Twitter, Instagram, and Facebook; many health care advocates have curated blogs that explore health education, the arts in health care, or their specific journey as a patient.

As an artist who creates at the intersection of art, science and neurotechnology, I am especially looking forward to the interdisciplinary nature of Medicine X.

It is in this spirit of interconnectivity that I have put together a short list of professionals who have one foot in the art studio and the other in the world of health care: designers and artists who are humanizing healthcare through creative initiatives.

As an artist who uses my own brain scans to create my artwork, I feel a sense of camaraderie with them. Some of them I know personally, others I have found online, and two of them have actually been featured speakers at Medicine X conferences in the past. Please email me at elizabeth@jamesonfineart.com if you know of others who should be added to this list.

Seven innovators blurring the line between art & health

Virgil Wong

Virgil is an artist, researcher, technologist and a friend of mine who is assisting me with my ideas around patient narrative and technology in health care settings. He is the founder of Medical Avatar, “a company that engages patients with an interactive reflection of their health in the past, present, and future.” His website features his fine art and his work with technology in the hospital settings. I was particularly inspired by his Ted talk about how technology can be used to improve people’s health and healthcare in general.

Annie Brewster

Annie is both a physician and a person living with MS. She believes that people need to own their stories, honor them, and share them. She founded Health Story Collaborative, an organization that “collects, shares, and honors stories of illness and healing… [Their] goal is to create a forum for story sharing to make the process of navigating illness less isolating, and to empower individuals and families facing health challenges.” Annie and I share the belief that patient narratives are powerful, important, and have been long ignored in health care settings.

Ted Meyer

Meyer is an artist and patient, currently serving as the Artist-in-Residence at the USC Keck School of Medicine. One of his goals as an artist is to increase and encourage conversation between patients, physicians, and healthcare providers. I first learned about Meyer through his series, “Scarred for Life: Mono-Prints of Human Scars.” In that specific series he created mono-prints of people’s scars, photographing the subject and celebrating their wounded body. The images present the scars as a source of strength, beauty and pride.

Rachel Stoltz

Stoltz is a Medicine X alumna, and was the artist-in-residence during the 2014 conference. She is a medical illustrator who also creates anatomical sculptures. Her work changed dramatically when her husband went through open heart surgery. She began to create artwork inspired not only by anatomy, but also by her husband’s surgery and the surgeries of others. Her goal as an artist is to “aim to give a visual voice to invisible illness — creating products to promote awareness, celebrate a journey, or honor those lost.”

Regina Holliday

Holliday is another Med X alumna. She is a painter and muralist who was spurred to activism after her husband passed away from kidney cancer in 2009. Holliday founded “Walking Gallery” – painted murals on the backs of jackets that speak to patients’ stories, health care reform, and other health topics. Her blog is “a place where art, medicine, social media and pop-culture collide and create a patient voice in health information technology.” She as well as others in this article are inspirations for my artwork.

Patricia Lay-Dorsey

Lay-Dorsey is a groundbreaking photographer. I learned about her after discovering her self-portrait book, “Falling Into Place,” which features images that celebrates her life with Multiple Sclerosis and show “from the inside” what it is like to live with a disability. In her artist statement, she explains that photography “allows [her] to engage with people in deep and intimate ways.” Her photographs are honest and vulnerable in portraying the reality of progressive illness. She is a testament to the idea that illness is a part of being human.

Flo Fox

I saved the best for last. I know I shouldn’t have favorites in a list that is already so exclusive. Fox is a street photographer who specializes in “ironic reality.” Her work is funny, striking, and real, capturing all aspects of the human condition. She lives with MS, lung cancer, and impaired vision. I thoroughly enjoyed the New York Times op-doc featuring her as she continues to explore the city and capture gems with the help of a caretaker.