My first TEDtalk
Delivered at TEDMED in 2016
I might look similar to all of you, but I’m slightly different. Just one mutation different. I was born with Gaucher disease, a genetic illness that keeps me from producing a critical enzyme that all of you do. As a result, I spent a good portion of my childhood in and out of the hospital. Gaucher clearly had it’s downside, there was the pain, the operations and lot of needles, and at 14 I would have told you that my illness was a total downer, but that missing enzyme lead me down an artistic path that I would not have found otherwise, and one that not only helped me, it has helped and educated many other people.
A common thought is that an unhappy childhood is a necessary precursor to artistic genius. I make no claim to genius, but I did find artistic inspiration in adversity, and fortunately it hit me early.
My journey started with the art cart lady at New Rochelle Hospital. She not only gave me crayons but she gave me an outlook on life. She nudged the 7 year old me to start incorporating IV tubes and bandages into my hospital room compositions. Other kids could draw the outside world but I might as well use what I had in front of me. She also told me that it was okay to paint my frustration about being sick way before art therapy was a thing.
For the next 30 years I painted pain, loneliness, and fatigue, and I got really good at it. Pain as a subject suited me. I might not have sold a lot of my contorted skeletons, or angry figure paintings, but I got good press. Everyone loves a sick artist: Van Gogh, Chuck Close, Frieda Kahlo – you may have a personal favorite. But my paintings were getting shown. I exhibited work from coast to coast. Gaucher had provided me with a never-ending source of artistic motivation.
Other than my failing health and a disease that everyone said was going to kill off early, everything was going well. That was until some scientists at NIH developed a recombinant version of my missing enzyme and with one biotech miracle, costing by the way ¼ of a million dollars a year, I was stripped of my artistic direction. Life saving drugs left me doing paintings that were no longer about suffering or angst, but love and happiness, and worst of all cats. It was enough to drive a healthy guy into depression.
I was at a crossroads. Paint those salable cats or find a way to better use the 30 years of additional time I had been handed for something more important.
One night, at an art gallery where I was showing some of those annoyingly happy paintings, I met a lovely wheel chair user. She had a long scar on her back that she showed off proudly in a backless dress. Her name was Joy and she was a joy; a real human homonym. We discussed art and our changing life situations. How at that point we were moving in seemingly different directions. I was getting more active, and she, after an accident, was less mobile. The interesting thing was that she was actually expanding her life. She was cast on a TV show and started working with a dance company to add rolling to their vocabulary of standard dance moves. She insisted that although I was now a “T.A.B” (Temporally Able Bodied), I should still be doing work about health and mobility because it was all still part of me.
I mulled that over for a bit, and because she was really beautiful, and because what she said had a ring of truth to it, I thought she might be right.
I called Joy that night and asked if I could make a contact print of her scar as a way to tell her story. I showed up at her house a few hours later with ink, a roller and paper and made the first print in my Scarred for Life series. A long blue imprint that clearly showed incision, stitching and the unnatural bend in Joy’s back where it had been broken. By listening to something that felt right I had my new path. I would change my focus from myself to other people with medical conditions.
At the first opportunity I showed Joy’s scar along with those of two other people. The reaction was unexpected. Gallery goers, normally more interested in cheese squares and wine, lined up to discuss the print as well as to tell me about their scars. I heard stories of accidents, operations and violence. People unbuttoned shirts and pulled down pants, they practically undressed in the gallery while giving me details of their ordeals, all the while pointing to their scars. It was like nothing I had experienced. I came to realize that there was a big need for scar victims, even those considered done with their recovery, to tell their stories in an effort to complete their healing. They needed recognition of their struggles and survival.
For the next 12 years I collected scars, I collected stories, and I made prints. I like to say I became the “bartender to the scarred because everyone wanted to talk”. Either by email from all around the world, or showing up at my studio, I heard all sorts of incredible scar stories. With each scar it became more clear that the people who landed up in my studio were not defined by their traumas or missing body parts, they were instead an mixture of pre- and post- scar narratives; linked together by that scar to create a new meaning of their experience. And my part of making something beautiful from their scars gave them a sense of closure, something they could hang on the wall that said, “done”, “finished”, “lets move on”.
With this growing mixture of personal stories, first hand accounts, and a love of art, I thought, what can I do with all this to change the doctor/patient connection? Could I get doctors to see their patients as I did, people with developing stories accented by treatment or trauma that kept unfolding years after initial treatment had finished?
I listened to my scar models’ medical histories and repeatedly I heard about doctors who were fantastic with a blade, yet less so with their bedside manner. I thought of my own medical care and the doctor, a wiz at sports medicine and joint replacement, who brought a group of med students into my room to show them “his scars”. his scars on my body, a result of a my bi-lateral hip replacement.
Studies show that empathy wanes as students advance in clinical training. The more they experience, the less that experience moves them. I thought if I could get to the students early, when they were still learning the art of medicine, I might be able to affect a change in how they looked at their patients. Maybe they wouldn’t just see them as a list of symptoms, but of possibilities. I came up with an idea to bring art by patient-artists into medical schools and tie their work to what was being studied in their core curriculum. For example, if the students were focusing on the respiratory system I might find an artist with asthma. An artist with Parkinsons would be the choice for the neurological system. Shows on back pain, cancer, migraines, dementia and adult with disabilities followed. I’d give them gallery shows and arrange a Q & A with the students and asked the artists to explain how their medical conditions motivated them to make art; how experiencing their particular illness, rather than limiting their lives, actually expanded their artistic horizons.
I want to share with you some examples of the artists I’ve brought to these medical students. Dominic Quagliozzi, an artist with Cystic Fibrosis creates artwork about his repeated hospital stays actually using his hospital time to make new work about his ordeal. His work expresses the boring routine of repeated hospitalizations. During his talk you could have heard a pin drop as he explained, and showed in his paintings, what it was like to live life on a waiting list for new lungs.
Susan Trackman, an MS patient talked about losing control of life while showing the intricate patterns she makes from all her spent medical vials. “The only control I have over my medical life is what patterns I make with all the junk it generates,” she told the students.
Ellen Cantor used vegetables to stand in for her herself in a series on back pain.
Michael K Arata created informational mandalas to prostate cancer during his treatment.
One thing I’m proud of is that my work starts conversations. Are these creations beautiful or ugly? Are they exploitative? Should we hide our scars or put them on display? I think you know what my answer. Choosing to put scars on display is a way of putting souls on display, and my models have taught me that healing is about overcoming, not about denial. You have to SEE the scars to start the conversation.
Five years into this project, after 19 shows featuring 25 artists, I have given a lot of artists a showplace for work that normally would be hidden. Works about cancer, bipolar disorder and electro shock therapy, no matter how beautiful, generally do not get shown in the art world. People say that art should be about something, until it actually is.
I plan to keep giving medical students access to artists and their images to build compassion and increase their understanding of what life is like with a chronic illness, opening a door that is not available to them in textbooks or doing rounds. Symptoms can give you a momentary reading. Art can explain a lifetime.
I might look similar to all of you, but I’m slightly different. Just one mutation different. I was born with Gaucher disease, a genetic illness that keeps me from producing a critical enzyme that all of you do. As a result, I spent a good portion of my childhood in and out of the hospital. Gaucher clearly had it’s downside, there was the pain, the operations and lot of needles, and at 14 I would have told you that my illness was a total downer, but that missing enzyme lead me down an artistic path that I would not have found otherwise, and one that not only helped me, it has helped and educated many other people.
A common thought is that an unhappy childhood is a necessary precursor to artistic genius. I make no claim to genius, but I did find artistic inspiration in adversity, and fortunately it hit me early.
My journey started with the art cart lady at New Rochelle Hospital. She not only gave me crayons but she gave me an outlook on life. She nudged the 7 year old me to start incorporating IV tubes and bandages into my hospital room compositions. Other kids could draw the outside world but I might as well use what I had in front of me. She also told me that it was okay to paint my frustration about being sick way before art therapy was a thing.
For the next 30 years I painted pain, loneliness, and fatigue, and I got really good at it. Pain as a subject suited me. I might not have sold a lot of my contorted skeletons, or angry figure paintings, but I got good press. Everyone loves a sick artist: Van Gogh, Chuck Close, Frieda Kahlo – you may have a personal favorite. But my paintings were getting shown. I exhibited work from coast to coast. Gaucher had provided me with a never-ending source of artistic motivation.
Other than my failing health and a disease that everyone said was going to kill off early, everything was going well. That was until some scientists at NIH developed a recombinant version of my missing enzyme and with one biotech miracle, costing by the way ¼ of a million dollars a year, I was stripped of my artistic direction. Life saving drugs left me doing paintings that were no longer about suffering or angst, but love and happiness, and worst of all cats. It was enough to drive a healthy guy into depression.
I was at a crossroads. Paint those salable cats or find a way to better use the 30 years of additional time I had been handed for something more important.
One night, at an art gallery where I was showing some of those annoyingly happy paintings, I met a lovely wheel chair user. She had a long scar on her back that she showed off proudly in a backless dress. Her name was Joy and she was a joy; a real human homonym. We discussed art and our changing life situations. How at that point we were moving in seemingly different directions. I was getting more active, and she, after an accident, was less mobile. The interesting thing was that she was actually expanding her life. She was cast on a TV show and started working with a dance company to add rolling to their vocabulary of standard dance moves. She insisted that although I was now a “T.A.B” (Temporally Able Bodied), I should still be doing work about health and mobility because it was all still part of me.
I mulled that over for a bit, and because she was really beautiful, and because what she said had a ring of truth to it, I thought she might be right.
I called Joy that night and asked if I could make a contact print of her scar as a way to tell her story. I showed up at her house a few hours later with ink, a roller and paper and made the first print in my Scarred for Life series. A long blue imprint that clearly showed incision, stitching and the unnatural bend in Joy’s back where it had been broken. By listening to something that felt right I had my new path. I would change my focus from myself to other people with medical conditions.
At the first opportunity I showed Joy’s scar along with those of two other people. The reaction was unexpected. Gallery goers, normally more interested in cheese squares and wine, lined up to discuss the print as well as to tell me about their scars. I heard stories of accidents, operations and violence. People unbuttoned shirts and pulled down pants, they practically undressed in the gallery while giving me details of their ordeals, all the while pointing to their scars. It was like nothing I had experienced. I came to realize that there was a big need for scar victims, even those considered done with their recovery, to tell their stories in an effort to complete their healing. They needed recognition of their struggles and survival.
For the next 12 years I collected scars, I collected stories, and I made prints. I like to say I became the “bartender to the scarred because everyone wanted to talk”. Either by email from all around the world, or showing up at my studio, I heard all sorts of incredible scar stories. With each scar it became more clear that the people who landed up in my studio were not defined by their traumas or missing body parts, they were instead an mixture of pre- and post- scar narratives; linked together by that scar to create a new meaning of their experience. And my part of making something beautiful from their scars gave them a sense of closure, something they could hang on the wall that said, “done”, “finished”, “lets move on”.
With this growing mixture of personal stories, first hand accounts, and a love of art, I thought, what can I do with all this to change the doctor/patient connection? Could I get doctors to see their patients as I did, people with developing stories accented by treatment or trauma that kept unfolding years after initial treatment had finished?
I listened to my scar models’ medical histories and repeatedly I heard about doctors who were fantastic with a blade, yet less so with their bedside manner. I thought of my own medical care and the doctor, a wiz at sports medicine and joint replacement, who brought a group of med students into my room to show them “his scars”. his scars on my body, a result of a my bi-lateral hip replacement.
Studies show that empathy wanes as students advance in clinical training. The more they experience, the less that experience moves them. I thought if I could get to the students early, when they were still learning the art of medicine, I might be able to affect a change in how they looked at their patients. Maybe they wouldn’t just see them as a list of symptoms, but of possibilities. I came up with an idea to bring art by patient-artists into medical schools and tie their work to what was being studied in their core curriculum. For example, if the students were focusing on the respiratory system I might find an artist with asthma. An artist with Parkinsons would be the choice for the neurological system. Shows on back pain, cancer, migraines, dementia and adult with disabilities followed. I’d give them gallery shows and arrange a Q & A with the students and asked the artists to explain how their medical conditions motivated them to make art; how experiencing their particular illness, rather than limiting their lives, actually expanded their artistic horizons.
I want to share with you some examples of the artists I’ve brought to these medical students. Dominic Quagliozzi, an artist with Cystic Fibrosis creates artwork about his repeated hospital stays actually using his hospital time to make new work about his ordeal. His work expresses the boring routine of repeated hospitalizations. During his talk you could have heard a pin drop as he explained, and showed in his paintings, what it was like to live life on a waiting list for new lungs.
Susan Trackman, an MS patient talked about losing control of life while showing the intricate patterns she makes from all her spent medical vials. “The only control I have over my medical life is what patterns I make with all the junk it generates,” she told the students.
Ellen Cantor used vegetables to stand in for her herself in a series on back pain.
Michael K Arata created informational mandalas to prostate cancer during his treatment.
One thing I’m proud of is that my work starts conversations. Are these creations beautiful or ugly? Are they exploitative? Should we hide our scars or put them on display? I think you know what my answer. Choosing to put scars on display is a way of putting souls on display, and my models have taught me that healing is about overcoming, not about denial. You have to SEE the scars to start the conversation.
Five years into this project, after 19 shows featuring 25 artists, I have given a lot of artists a showplace for work that normally would be hidden. Works about cancer, bipolar disorder and electro shock therapy, no matter how beautiful, generally do not get shown in the art world. People say that art should be about something, until it actually is.
I plan to keep giving medical students access to artists and their images to build compassion and increase their understanding of what life is like with a chronic illness, opening a door that is not available to them in textbooks or doing rounds. Symptoms can give you a momentary reading. Art can explain a lifetime.