Laura Ferguson came to the NYU School of Medicine as artist in residence in 2008 and currently has an exhibit of her artwork in the MSB Gallery at NYU - Langone. In a previous blog post, Ms. Ferguson discussed how she uses medical imagery in her work. In speaking with her by phone in the days following the opening of the current exhibit, I asked her to discuss her work with medical students who study anatomical drawing with her during an eight session elective, 'Art & Anatomy,' in NYU's Master Scholars Medical Humanism Program.
In her work with students (as well as faculty and staff) Ms. Ferguson sees herself as a mediator between the world of art and medicine and between doctors and patients. Excerpted below is some of our conversation.
-Lucy Bruell, Editor-in-Chief, Literature, Arts, and Medicine Database
I came to NYUSOM with the idea that an artist’s perspective could be of value to the medical school community. This exhibit is a chance for me to show what I’ve been doing as an artist in the four years that I’ve been here. I've learned so much in my interactions with faculty, staff, and students. This is a chance for me to give back and to share what I’ve been doing, which was part of my original goal. My work with students has been a big part of that.
When I first came in, the first year, the students would study gross anatomy the first semester of medical school, and those who wanted to took my class in the spring semester. In other words, they’d have dissection in the fall, and then drawing in the spring. But after that, the curriculum started changing, and now they have gross anatomy spaced out over 18 months. And they may take my class whenever they want to, because it’s given every spring and fall semester, so they may be at different stages in learning anatomy. Some of them may even take my class before starting gross anatomy, so I become the person who introduces them to the lab, which I wasn’t expecting. But I've always thought that drawing is a great way to learn.
I basically learned anatomy through drawing. You spend so much time communing with the object or the thing that you’re drawing that you come to know it in a way that’s much deeper than dissecting it or just looking at it in a book. It’s a very different relationship to being with the cadaver, or the bone. Drawing in the anatomy lab is much more open ended; it’s just about the process of learning and drawing. You don’t have to memorize anything, or have a test afterwards, so it’s very relaxed, freer. There’s also a mindfulness that you get into when you’re drawing, that I thought would also be a good experience for doctors-to-be, just to have a different connection to the bodies. Another aspect is the idea of individuality, which is an important part of gross anatomy. The fact that there are all these different cadavers, all these different people, and each one is different from the others. The students get to look at different ones and see all these anomalous things. But when they’re looking at the anomalous things, it’s largely to see pathologies, or things that are wrong. Obviously they need to learn that sort of stuff, but my approach, especially as someone with scoliosis, is more to just appreciate the individuality; that we’re all different inside, just as we’re all different on the outside.
The class is held in the anatomy lab. When you enter, there’s a study room in the middle, with just tables. You don’t see any cadavers when you first look in. And then on the two sides there are two rooms that have all the cadavers. We first meet in that middle room, and I start them off with drawing bones. Next, I give them a tour of the cadavers, especially for the ones that haven’t been in the lab before, and when they’re ready, I let them start drawing in there. Sometimes we actually take out a heart or a lung from the cadavers on a tray, and they draw it. It can be a little tricky, because we have to depend on what stage the students are at in dissecting: when they've just begun, there's not much to look at or draw, and when they're almost done, the cadavers may be hard to look at. But we manage to find something to draw at all these different stages.
In the beginning, I tried to get the students to talk about the emotional side of being in the anatomy lab. Some did, but others were resistant, and would just say "We’re fine. After the first day we got used to it." Which is probably true on one level, but on another level, there has to be a lot going on - it’s such a profound experience. But when you’re drawing, you’re expressing yourself, whether you like it or not. Something’s coming out of you - especially if you’re drawing from a cadaver or a part of one. You’re bound to be, on some level, dealing with feelings. To let it happen, in an open, non-judgmental environment, has an effect. And students do talk to me at different times about the deeper issues of being in the anatomy lab, how they deal with that in different ways…
The biggest problem for students is time, so the class is a treasured thing. They can’t always make it to every session. But the ones who do come, I think it means a lot to them. I’ve been very amazed and interested to find how many of the students actually have some sort of arts background, or humanities background, and for them it’s a link to a whole other side of themselves that they may feel they have to put aside in medical school. So it can be very meaningful - their drawings are something they can show to their friends and family- they can make that connection to the other side of their interests that they had before they started medical school.
Laura Ferguson's exhibit will be on display until August 13th. An exhibit of student work is scheduled for November.
Arthur Robinson Williams is a PGY2 Resident in the Department of Psychiatry at New York University. He earned his M.D. and a Master in Bioethics at the University of Pennsylvania School of Medicine and Center for Bioethics. Williams studied photography at Princeton University with Emmet Gowin, Mary Berridge, and Lois Conner. His work, sponsored by an Open Society Foundations Documentary Photography Project grant, can be found at www.MyRightSelf.org.
The University of Toronto Press has recently published an anthology celebrating the 5-year history of its medical humanities journal Ars Medica. I have included excerpts from the article I first published as a medical student in the Fall 2008 issue of Ars Medica that has been reprinted in the anthology. The article grew out of a documentary photography project, MyRightSelf, that I developed with transgender individuals and couples in the Philadelphia area over the course of 2008 which was subsequently funded by an Open Society Institute Documentary Photography Project grant. Now working as a second-year psychiatry resident, the publication of the anthology has given me an opportunity to reflect on my travels- academic, clinical, spiritual, photographic, and otherwise- in the intervening three years.
Dane and Erin. "There are always things I think people would change about their bodies. I know no man whose chest is big enough, hairline is stable enough, abs are eight-pack enough. I don't think I am above all these influences. I wish I were taller and I wish my chest were without scars. Although they are fading slowly, my scars are pretty prominent."
Most striking is the loss I feel in acknowledging that this project was the last significant work of photographic portraiture I have completed. While I have occasionally engaged in some landscape work while vacationing, my long hours in the hospital during residency have largely eclipsed other meaningful forms of engagement and creativity in my day-to-day life. I have also found that successfully living in New York City demands its own toll- the scale, expense, and cacophony of the City adding to the fatigue engendered by 14-hour shifts.
Perhaps those are excuses however, rather than true explanations for the distance that has grown between my photographic lens and potential subjects. I remember writing in my personal statement when applying to residency programs:
The psychiatrist and the photographer have much in common. Whether relating to another person as a patient or a subject, both contemplate notions of identity and perception, of the Self. Both, at their best, similarly investigate their own biases in understanding those of others. Perhaps this is why Psychiatry felt so familiar to me- it was a role that I had already cherished. Part of what I was seeking in medicine was the opportunity to sit with someone, to be available to them, to learn more about the human experience.
Jake: "I gained confidence in my ability to pass, not only physically, but socially as well. From there I started going to gay bars-not to hook up, but just to be there, to be around gay men, again, to be in gay space that I felt safe navigating. I liked letting gay men flirt with me. It made me feel validated in my gender.
Clinical work in the mental health field is emotionally draining. I wonder if the reserve I needed to make photographic images has been otherwise spent on treating patients. The average doctor's day is filled with images, some radiologic, some metaphorical, others directly observed. Psychiatrists especially cultivate these images, drawing anecdotes, memories, and projections from their patients. The investment in this process consumes creative spirit as well as pathos. From Ars Medica:
For the participants with whom I have worked, the act of making a photograph has become-should be-as cathartic as the knowledge that the images will eventually reach a broader audience and as profound as the impact of the images upon viewers. For patients, likewise, the journey toward diagnosis and treatment may have as marked an impact on their latter years as their medical condition and/or disease state.
As a provider I have struggled not only to successfully complete a work up and treatment plan, but to find ways to enrich the process itself. Medicine-as-process, as a creative form imbued with empathy, becomes its own artistic medium in the act of naming and thwarting disease. Maintaining energy to do this well requires a source of renewal. I look forward to the day when once again this source may be found behind the lens.
Commentary, art, and poetry by Eliette Markhbein, M.S., M.A. Founder, The Therapeutic Arts Program, Department of Rehabilitation Medicine, The Mount Sinai Medical Center, New York City
Drawing and writing came naturally to me while in rehabilitation after sustaining a traumatic brain injury and injuries to my spine, the result of being struck by a speeding car. They eased the physical, emotional and mental pain that were my constant companions and helped me find answers within.
Though complementary, the drawings and poems originated from different perspectives of the topics explored, emphasized other aspects and fulfilled separate quests. For example, "Braced-up" addresses in words issues of self concept and acceptance while the illustration was a life drawing, part of a series of sketches exploring femininity and searching for my own femininity after the accident. As a whole the series illustrate with candor and immediacy universal aspects of disability and rehabilitation, focusing on three periods: succumbing-hoping-coping, roughly a year each.
2005-2006 was the year of reckoning: reckoning with the extent of my cognitive impairments and contending with a person I did not know, could not count on and did not like-in other words the new me in all her splendor. Poems of that year (Writing; Alone; I so miss us) articulate the emotional distress and existential anguish I felt, the physical pain which became chronic, the depression that ensued and the unbearable loneliness, despair and isolation I experienced. I wrestled against drowning forces such as mental chaos, fatigue, lability and fear that was invisible to others.
Write, write, always write
write when you have nothing to say
write when you don't feel like it
write like you breathe
but always write.
Write to escape, to soar
to feel free, to feel whole
to feel peace, to feel love.
Write to shut up pain
the anguish, the fear
the edge of the precipice
the void, the despair.
Write to learn
to let the night cradle you
to let your guts expode
your thoughts liquefy
to let FEAR exit.
yet do not look.
yet do not reach.
Crouched - a shadow
I SO MISS US
Where have the playfulness
sense of strength
and unity gone?
We walk on glass shards
afraid of each other’s
and our own explosions
locked away in pain
silently crying alone
grieving the light
and graceful dancers
we were not so long ago.
Where have the laughs
gentle touch, teasing
kisses as we cook gone?
My body is a casket
dark from fear
tight from despair
frigid from pain.
Your time is
spent away from home
away from me.
the rejoicing in Fall
the lazy afternoon
the comforting arms
You are lost
and so am I
in the maze of my
in the dread of your
Burnt out, listless
to where? to what?
2006-2007 was the year of discoveries: poems of that year (Displaced; Braced-up; Rays) express a shattered sense of self, the discovery and the need to prevail over panic attacks and other dirty tricks my injured brain played on me, and the unearthing of new sources of peace, strength and clarity.
Pink antique tiles
bear my weight
night air from
brushes my face.
White linen drapes
sweep the floor
a tablecloth covers the table
empty but for a glass bowl,
Leaning on the wall
a tall mirror
sends my image
And I stand
in the middle
of the kitchen,
recognizant of the place
the light, the sounds
yet not knowing
where I am
I have become a Frankenstein,
patched up high and low
and in between.
From neck to feet
braces, braces, braces
holding me up
Each set of
and metal hooks,
Yet, when I disrobe
and shed my carcasses
your eyes rest
on my curves
and you call me beautiful.
Rays of something better
flash my conscience
like headlights in the night.
A heightened sense
lightens my soul
frees my spirit.
Seeds of hope and wonder
a sense of joy and purpose
for a new beginning
flows vibrant in my veins.
A new strength
sourced in peace
rich in possibilities
reveals itself slowly.
What shape, what color
will my new life be?
2007-2008 was the year of growth and fruition: poems of that year (Travel; Florida Summer; Attending) speak of acceptance and integration of my disability; group identification and advocacy; achieving a healthy balance between dependence, interdependence and independence; recapturing a sense of pleasure and playfulness; and reclaiming a social and professional place.
The last poem "Attending" talks about my caring for a locked-in syndrome patient as a Therapeutic Arts Practitioner, a metamorphosis from patient identity towards becoming a healer. As a final note I would like to emphasize that while the series of poems clearly indicate progress and resolution, the issues they describe do not disappear- with time, help and the application of compensatory techniques and strategies one becomes better at dealing with them.
Hello, your destination is
Atlanta flight is delayed
heavy weather down there.
Connections will be missed
layovers will be long
fatigue and despair will settle in.
The wheelchair waits
at the counter,
parked by my side
let’s go before
I explode in tears.
Your hand clutches mine
as we zip through the airport
sobs build up and flood my face.
Panic sets in, stomach, heart
shoulders, down my legs
Thirty second cycles of hell.
You say people will think
I am sad to leave you-
I smile, I am.
Three loops of 30 seconds already.
I kiss your face lightly
your lips softly
you disappear behind security.
Hi, I wear a brace
need to be checked
by a female officer.
Yeah, yeah. Go through.
I ring loud and clear.
Take off your watch
sure, it’s not the watch,
it’s the brace.
Mam, do as you are told.
No watch- I ring loud and clear
Do you have any metal on you?
Please remove it
Can’t- why not?
Ok… Step to the
side, voices criss in the
walkie talkie "female
Now the wait bare feet
exposed to incredulous
I am not normal
I am disabled
I am not a security threat.
Wheelchairs with gray
haired ladies zoom by
I am not gray haired.
My attendant huffs and
No curtains, no privacy
I am frisked- humiliated
I want to flee. I cry.
And the sun shines
and the breeze blows
and the trees sway
I will break away
my spirit will heal
I will feel whole again.
Nickel size water drops
percolate on the burning
tar, evaporting at once.
Steam rises fast
volutes of pearly
soaking the wind
easing my skin
curlng my hair.
Lemony scent of magnolias
infuse the heat
tall grasses and leaves
green and earthy smells
lay thick to the ground
Oh no! my flip flops float away
go go little boats.
Mute? Not so,
not by the farthest
stretch of imagination.
shape silent words.
I hear them.
They stretch and lift a smile:
They round, soft and gentle:
They pout and tighten:
lovely and deep
shape silent thoughts.
I hear them.
They reflect deep in their pool
variant colors and tones
shape silent emotions
I hear them.
They hold each other
close and tender
listening to the book we
They beat to the music
light and free
telling me your joy
in the rhythm.
loud and clear
the richness of your
the sharpness of your
the strength of your
your thumbs up
when I leave
fill me with gratitude
to share your life a
Commentary by Michael Nevins, M.D., author of Jewish Medicine: What it is and Why it Matters and A Tale of Two "Villages": Vineland and Skillman, NJ. This commentary written in conjunction with an exhibit at New York University School of Medicine, Sept. 24-Oct.19: Art and Medicine in Terezin.
All of us felt a sense of sliding helplessness, again and again, day after day, night after night, you descended toward the abyss whose bottom was unfathomable….you felt only the downward movement, the fear, what next?
These chilling words, reminiscent of an earlier Prague resident Franz Kafka, were written in April, 1942 by Bohemian dermatologist Karel Fleischmann. With the Nazi takeover of Czechoslovakia in 1939 the situation for Jews had deteriorated and anti-Semitic racial laws restricted the doctor's ability to practice. Now at age forty-five, Dr. Fleischmann (b. 1897) awaited deportation to Terezin, the recently established ghetto town some forty miles to the north.
The morning of our deportation was pitilessly cold. The clouds as black as ink, the rising sun blood red in the background…darkness on earth, darkness in our souls…a nightmare. We arrived in Terezin in the evening. Really, you did not arrive, you were consigned. Someone managed for us for we no longer were we - we had become an object, a number, a ground substance, a kneaded mix of humans….Tired to the bones, sick, longing for quiet and sleep, we came into the cellars and dark holes of the barrack…still the mass was mixed, kicked and reduced to nothing, dirtied, put on the floor, kneaded and rolled till we became a formless porridge, a heap of rubbish….poisoned with the taste of the stable.
Dr. Fleischmann had been advised that upon arrival in Terezin he should look up the head of the ghetto's Health Department Dr. Erich Munk, but making contact was difficult. Known for his scrupulous integrity and organizational ability, the thirty-eight year old radiologist Munk (b. 1904) had been selected by Zionist leaders to direct what would become a massive medical apparatus.
Whereas Karel Fleischmann was prolific with more than a thousand of his diary notes, poems and art work surviving the war, only a few fragments of Dr. Munk's words remain. The following probably written during his first year at Terezin describes his first unpleasant impressions:
We had not yet freed ourselves from the needs of comfort, social norms, social stratas, prejudices…We had not yet realized that we have been set apart for an unknown length of time into an uncertain future. The impressions are as damp as the weather had been. Muddy like the mood of us all. Was I desperate? No. I was only deeply touched. I needed two nights and two days to overcome my deep depression, to be able to overcome my own self. I was unable to concentrate my thoughts on work….It was at noon of the third day that I suddenly succeeded in breaking through and submerged myself straight into work. Work saved me…ever since then I haven't stopped working.
As they endured their personal metamorphoses, Drs.Fleischmann and Munk learned a crucial survival technique - they could help themselves best by helping others.
In 1780 Emperor Franz Josef, the emperor of Austria, built a garrison town in Bohemia which he named Theresienstadt - the city of Theresa, after his mother Queen Maria Theresa. After the formation of Czechoslovakia in 1918 the town was called in Czech Terezin. Then with German occupation during World War II, again it was officially designated as Theresienstadt. In later years both names were used depending upon the perspective of the speaker or writer. English language references tend to prefer the shorter Czech version which is used in this essay.
The Terezin ghetto was euphemistically described by the Nazis as "a city of refuge" or sometimes as "Hitler's gift to the Jews." In truth it was an assemblage camp where Jews were concentrated for varying periods until they were deported to "the East" - another euphemism for death camps, particularly Auschwitz-Birkenau. At first,Terezin was intended for Czech Jews but, before long others mainly from central Europe were shipped there - affluent, privileged, older people — rabbis, scientists, war veterans, musicians, artists — as many as 58,491 in September, 1942, all sharing space with rats, lice and fleas. Few of them suspected what lay ahead; many felt fortunate to be in this safe haven - some even paid for the privilege. Famously, in June, 1944, a delegation from the International Red Cross visited and couldn't, or wouldn't, appreciate the masquerade. They reported favorably to the world on conditions in what Nazi called the "model city" — in truth it was a Potemkin's Village - a place of false facades.
Terezin is often remembered as the concentration camp where guards turned a blind eye to cultural activities that were put on by the prisoners. Perhaps these were permitted for the purpose of propaganda or to temporarily appease the doomed inmates. There was a cabaret of sorts with a jazz band and performances of Verdi's Requiem and the children's opera Brundibar were sung by doomed choruses. Hundreds of lectures were given by famous scholars. Why did they do it? For some it may have been an escape into a semblance of normalcy; for others it represented a proud act of defiance - of being able to act human in the midst of depravity. Yet, few prisoners actually could attend the cultural events - most were too exhausted from work or were literally starving. Although technically Terezin was not a death camp, between November 1941 and May 1945 of nearly 160,000 people sent there, some 36,000 died of illness or starvation; the rest, about 88,000, were deported to extermination or work camps with only a few thousand of these surviving the ordeal. When the Russians liberated Terezin in May 1945, there were only about 30,000 survivors, more dead than alive. Within weeks many more died of a typhus epidemic. Of more than 12,000 children who passed through Terezin, only 325 survived.
Health Care in the Ghetto
Terezin's main hospital was located in a large barrack which had been built in 1780 to service military and civilian populations of about 7,000 people. It was ill-suited to care for the needs of 40 or 50,000 prisoners at a time and although solidly built with high vaulted wards and a huge attic, it was a hospital with no beds or bandages, no sterilizing equipment or instruments. Nevertheless, there was an abundance of knowledge and resourcefulness among the physicians. Dr. Munk's Health Department was able to collect some antiquated or broken equipment; glasses, orthopedic shoes and trusses were fitted and repaired, test tubes were manufactured and eventually a central pharmacy was stocked from medicines confiscated from new arrivals. Later this was supplemented by supplies brought in from the defunct Jewish hospitals and clinics of Europe. And so, gradually, a semblance of a functional hospital emerged.
Fleischmann's Portrait of Dr. Munk
Concerning his art work at Terezin, Dr. Fleischmann once wrote "I wanted to see the world differently and I could perceive it by making many hundreds of drawings." His subject matter frequently was mundane while at other times his art hauntingly depicted life in the ghetto. He was especially intrigued by the thought of drawing "the Munk." Here Fleischmann considers how he might develop the boss's portrait in geometrical terms according to Cezanne's cubist style:
I have repeatedly tried to draw him. It's not easy. ..I made a whole lot of drawings with little success. Dr. Munk says about himself that he does not have a photogenic face. Maybe he is right. [But] from a painter's point of view his face is not only most interesting, but his entire stature and movements which are like counterpoint in a subconscious composed symphony movement
I'll have to set up two, slightly upstanding but beautifully formed ears, above the ears a wreath of shining dark brown hair on the crown of the head something that once had been a bushy mane - without being impertinent…[now] a head which can be called bald.. It should not be [overemphasized] because this is a weak point of the otherwise brave Maccabee…The head, although small is proportional to the upper part of the body [and] establishes symmetry and almost a monumental impression. Yet the most remarkable are the eyes - dark, deep, seemingly with no transition from the pupils to the iris, shadowed by the sleeplessness of long nights, supported by some striking crossbeams under the sunken cheeks.
The center is marked by an aristocratic finely-cut nose betraying a strong spirit, a proud person; it is a brave man who is facing you. In the physically small head lies a mighty brain. This small head is not the way a puppet's head is put on. It is a real organic entity, an integral part of the rest of the body. It's also the hands that impress you so. They are big, much too big for the small face but not malformed or clumsy, quite the contrary. They are strong and betray knowledge and feeling for what they hold… These are the hands of an energetic, yet gently touching surgeon.
When you see the gaunt man with his inflamed eyelids and tired mouth, how relentlessly he works for the welfare of the Ghetto inmates… then you can't lag behind him. For me personally, Dr. Munk has become a real experience. Rarely have I met people of his stature. It will be an honor for us all to be able to say that commissioned by the Health Department of Ghetto Terezin we were permitted to work together with Dr. Munk.
Karel Fleischmann began one of his last poems with these words:
Nobody will hear my song
The world of my time ends behind these walls.
But the doctor was mistaken. After the war's end, more than a thousand of Fleischmann's drawings, written notes and poems were found and collected in archives in Czechoslovakia and Israel. They provided valuable testimony because as doctor-artist-writer he was able to see and record the entire panorama of suffering including hunger, fear, overcrowding, sickness and brutality. Gradually the world became aware of Karel Fleischmann's unique contribution but only a small amount of written material was translated into English. Then in 2004 an article appeared in the International Journal of Dermatology which described the doctor's life. The authors Leonard Hoenig of Florida and Tomas Spenser and Anita Tarsi of Israel concluded their review by noting that although Karel Fleischmann perished, his dream for a better future endured, declaring that it is up to each of us to help make it a reality.
This blog essay has been adapted from a longer paper.
References and Acknowledgements
Primary material that has been reproduced here in italics was extracted from unpublished documents found in files of the Theresienstadt Martyrs Remembrance Association, Beit Theresienstadt (BT) at Kibbutz Givat Haim-Ihud in Israel. These had been translated by others into English and, in turn, I have slightly edited or resequenced portions for the sake of coherence. If in the process, factual errors may have inadvertently occurred, they are my own responsibility. Lydia Shmolka of BT translated some documents into English from their Health, Altestenrat and Erich Munk files. Several of Dr. Fleischmann's journals and poems which depicted the doctor-writer-artist's prewar work were translated into English by Hana Houskova and reproduced an unpublished biography Rack of Time (BT Karel Fleischmann File No. 601.) Other useful sources were Vera Schiff's memoir Theresienstadt: The Town the Nazis Gave to the Jews (Toronto: Lugus, 1996) and Ruth Bondy's Jakob Edelstein. Elder of the Jews (New York: Grove Press, 1981.) The best English language biography of Dr. Fleischmann is the reminiscence Dr. Karel Fleischmann: The story of an artist and physician in Ghetto Terezin by Leonard J. Hoenig, MD, Tomas Spenser, FRCGP and Anita Tarsi of Beit Theresienstadt (International Journal of Dermatology 2004: 43. 129-135) and the accompanying Commentary by A. Bernard Ackerman, MD The Importance of Remembering Karel Fleischmann. I wish to acknowledge Oded Breda, the manager of Beit Theresienstadt, and historian Dr. Margalit Shlain for their constructive suggestions.
Commentary by Mary Spano, Medical Photographer, The Institute of Reconstructive Plastic Surgery, NYU Langone Medical Center.Spano's work is on exhibit from June 29-August 31 in the Smilow Gallery at NYU School of Medicine. Free and open to the public.
In October of 2006 I joined the team at the Institute of Reconstructive Plastic Surgery at NYU Langone Medical Center, as its medical photographer. At the time, I was a professional photographer with a 20-year commercial background. In addition, I had worked as a Radiologic Technologist over the years to keep my photography career going, but I wasn't sure what medical photography was. I soon found out that I had gotten my "dream job." It combined everything that I loved about photography and knew about medical imaging. My job is to photograph people with facial differences, mostly children, and to provide diagnostic images for our doctors to plan surgeries that change those children's lives.
In the beginning I photographed pre and post surgical protocols. Many of our patients are young and vulnerable; they are apprehensive about everything "clinical." I began building my studio as a child friendly environment. I brought in child-sized posing chairs, dancing toys, and bubble machines - anything that would make the children comfortable enough to obtain the diagnostic photographs that the surgeons needed to plan their surgery.
Then one day around Christmas 2008, I was photographing a small child who was particularly apprehensive about letting go of Daddy's hand and I asked him if he wanted Daddy and Mommy in the photo with him. He said yes, and the "Family Portrait Project" was born. I took that first portrait not knowing what it would mean to the families or our department. Here, our families can sit for a portrait in a private setting, without any inhibition. Many of our families might not otherwise have a family portrait. These portraits are now displayed at the Institute in the gallery in our conference room.
The portraits have become the face of the Institute. They also help the staff illustrate to new families that whatever they may face along their path, they have the support of everyone at the Institute as well as the families we treated before them.
Working at the Institute is the most humbling and rewarding experience that I have ever had. I enjoy every day, and look forward to continuing to illustrate the incredible work the Institute does to transform the lives of children with facial differences.
Commentary by Ted Meyer, Los Angeles-based artist. Meyer’s work is on exhibit through June 15 in the Smilow Gallery at NYU School of Medicine. Free and open to the public.
Every time I travel, people ask me if I expect to incorporate my travels into my painting. Will there be an Indian elephant or a zebra showing up in my work? I tell them all that I am not that sort of artist. No landscapes or sunsets for me. I explain that my work comes from a very internal place. For years it was Ted-centric and only dealt with my struggles to have a normal day-to-day existence. I was oblivious to elephants in my art though I have enjoyed riding them.
Since my childhood, I have created work about being sick or in pain. It all started with the "Art Lady" who brought her art cart to my hospital bed and suggested I make compositions with band-aids and IV tubes. Mixing illness and art seemed a normal confluence.
When I was older, I painted pained figures and broken bones. Progress I guess. Self directed art therapy, for sure.
After new treatments, joint replacements, operations and infusions I felt that I was pretty much normal and found myself a bit lacking in artistic direction. I didn't feel it was honest to continue making art about being sick. I needed a new direction but nothing came to me and I refused to draw sunsets.
Now much of my work deals with others because of a chance meeting over 10 years ago. That was when I learned that a life can be changed by meeting one special person at just the right time. For me that person unexpectedly arrived at one of my art openings. It was a very Los Angeles kind of affair. I was in conversation with celeb guest Henry (The Fonz) Winkler and Candice Bergen when SHE rolled into the gallery, A beautiful woman whose grace only seemed enhanced by her wheelchair. She wore a stunning black dress with a low back. I couldn't help but notice the long scar that graced her back.
Over time we had many conversations about our situations. She had fallen from a tree while a counselor at a summer camp. Still, she performed with a noted dance company and has had many roles on television and on stage. I was born with Gauchers disease and spent many years in some level of pain or discomfort. We shared a common acceptance of our differences to that of the "normal" population.
Before this meeting, I had never thought much of my own scars and I had many from multiple joint replacements, a splenectomy and the normal childhood emergencies and accidents. Most of my early artistic career focused on me, my body and my illness which I visualized as a very internal thing. I created images that reflected on the damage done to my bones and the mental pressure to choose treatments with new and experimental drugs.
During one of our talks, we discussed how her condition was obvious yet mine was totally hidden as long as I was dressed. We talked about our scars and what they represented and what it meant to allow others to view them.
I became focused on her scar as a way to tell a story. How rods had been inserted and removed from her body. How each operation on her back left additional markings. How the scar made visible the exact place her spine had been damaged. Her scar was not just a marker of her ability but rather a road map of what made her life unique. It wasn't just a scar. It was HER scar. Something that no one else had. Not only did it make her physically unique but emotionally different. If I no longer had anything to say about my medical condition maybe I should make a statement about how I viewed other people's lives and conditions. Maybe I'd become a documentarian. An artistic Studs Terkel.
Scars mark a turning point in peoples' lives - sometimes for good but often otherwise. Each scar comes with a story. Why is it there? Would the person have died without surgery? How did the "scarring event" affect them emotionally? Scars can mark entering into or out of a disability. Going from cancer to health, limited mobility to full movement. They freeze a moment in time, a car accident or gun shot.
My mono-prints, taken directly off the skin of my model-subjects are portraits of those events that changed their lives. I accentuate the details of the scar with gouache and color pencil.
My hope is to turn these lasting monuments, often thought of as unsightly, into things of beauty.
Note:AA Sections of this commentary have been excerpted from the artist’s catalog for Scarred for Life.
Commentary by Virginia Aita, PhD, William Lydiatt, MD, Mark Gilbert, BA (artist), Hesse McGraw, MA and Mark Masuoka, MFA
AThe exhibition "Here I Am and Nowhere Else: Portraits of Care" explored 45 individual’s experiences with health, illness and caregiving. Three-thousand people attended the inaugural ten-week exhibition of the works that concluded on February 21, 2009 at the Bemis Center for Contemporary Arts in Omaha, Nebraska.A The exhibition arose from a qualitative research study that two of the authors, V.A. and W. L., designed with Scottish artist Mark Gilbert for his two-year residency at the University of Nebraska Medical Center (UNMC). The study, approved by the UNMC Institutional Review Board, included a number of stagesA from the design phase to the recruitment of patient and caregiver subjects, to Gilbert’s active drawing and painting phase, and finally to several stages of analysis and most recently to the exhibition of works.A The findings of the study will be published elsewhere, but we thought blog readers would be interested in knowing about the exhibition and how, as contemporary art, it played a role in helping exhibition viewers engage in an ongoing conversation about the nature of health, illness, care and the challenges, both professional and familial, of caregiving in our society. The exhibition included portraits of 25 patients from across the lifespan representing many varied situations on the spectrum of health and illness and 20 caregivers, both professional and familial.A The portraits served as a focus of conversation during the exhibition and a series of organized lecture-discussions about issues raised by the paintings. We describe below what transpired as we considered Gilbert’s large drawings and paintings that revealed obvious and subtle truths about health, illness, care and caregiving.
The Idea of Care and the Role of Contemporary Art
AOne of the important ideas that arose from the earliest analysis of the drawings and paintings of patients and caregivers was the idea that care is a non-instrumental, holistic process of personal engagement.A We also discovered that the boundaries of this engagement were not as defined as we had originally assumed-all human beings share in the experience of care and caregiving-sometimes as a patient, sometimes as a caregiver, and sometimes as both at the same time. This realization was further strengthened by patients’ willingness to participate in the study in order to "give back" so that others might learn from it.
As the exhibition drew closer, we knew that we wanted to explore the engagement that happens in the transfer of care between patients and caregivers.A To do this, we realized that framing the ideas we wanted to explore would be important.A At the same time, we wanted to encourage the public to join in the discussion.
To frame the important ideas, we invited the public to a pre-exhibition reception and evening of short background lectures the night before the actual gala opening of the exhibition at the Bemis Center for Contemporary Arts. The first brief remarks were made by project investigators about the origin of the project.A Following this, the Director of the Bemis Center for Contemporary Arts, Mark Masuoka, spoke on the role of contemporary art in society and in particular about the role of this exhibition in the on-going national discussion about health care.A He was followed by artist Mark Gilbert who spoke about his experience working as an artist-in-residence within a medical center with patients and caregivers. Finally, Emeritus, US Poet Laureate, Ted Kooser spoke about his experience as a patient featured in the exhibition.A Kooser then read a selection of poetry about his encounter with illness helping to focus the events that would follow during the exhibition.
The opening lectures set the stage for a series of three gallery discussions that took place every other week during the exhibition itself when we invited a speaker or panel of speakers to share with the audience their insights and experience about care relative to the drawings and paintings.A After each had spoken, the speaker(s) opened the discussion to the audience so that a give-and-take conversation about the topic could take place.A We held the lecture-discussions in the gallery itself, with the portrait works all around us.A Attendance varied between 80 and 150 participants.
Patients and caregivers
For the first lecture-discussion on January 15, 2009, we invited a panel of patients and caregivers to talk about their experiences with the portrait project and we asked how it had influenced them in thinking about their roles, whether as a patient, a caregiver or both.A Two patient subjects spoke. One had undergone bariatric surgery for the purpose of health promotion while the other had been under treatment for brain cancer over a period of 10 years. Of the two caregiver subjects who spoke, one was a familial caregiver, the other a physician.A Panel members spoke about five minutes each about their experiences of being drawn or painted and then reflected on the meaning of it in their lives. The patients both stressed how the artist had succeeded in seeing them as whole people, not just physically but psychologically intact and the importance of that for effective care to take place.
Jove, a nearly blind African American, spoke about the importance of the project in helping to break down all kinds of barriers that prevent us from seeing, appreciating, and caring for another. The caregivers spoke about the impact of the project in helping them see and be responsive to the whole person (the patient). Dolores, Roger’s wife told of his belief in the importance of the project to help others overcome their fears of the ill.A He wanted to help care for others, even in his own debility caused by ALS so that they might learn more about the importance of personal engagement in care.A She said only as she understood the meaning of the project for her husband did sheA comprehend its importance and relationship to what she was doing in caring for him. The physician caregiver commented that the project had highlighted the importance of the bond that exists between patients and caregivers and had affirmed for him the importance of loyalty to the patients he serves.
Following these comments, we passed the microphone among members of the audience and many reiterated the importance of the relationship that exists between the ill and those who care for them-emphasizing that it is the relationship that is the heart of care as it unfolds in the doing of care.A Several people also raised the issue of how difficult it is both to be the recipient of care as well as the giver of care.A They spoke of our human condition that must yield to being both giver and a receiver of care, at different times or sometimes, at the same time.A Both roles are difficult and demand changes in who each is as a person, in personal identity, the topic of the second lecture -discussion.
On January 29, 2009 Dr. Carl Greiner, a psychiatrist, spoke about the introspective nature of the portraits and what they imply about the nature of care and its relationship to personal identity. Walking from painting to painting in the softly lit gallery he engaged audience members in observing and explaining what they saw in the drawings and paintings. For example when he focused on one large almost 6′X6′ painting of the head of a bald young man nearing the end of his life despite chemotherapy for cancer, Greiner discussed what the audience’s observations implied about the patient’s psychological state and probable hopes, fears, and transformation due to illness.A This portrait is so compelling that it brought out psychological responses of audience members who articulated their own fears of cancer and death as they sat face-to-face with the raw truth of this young man’s life and imminent death.A In the communal and safe space of the gallery viewers engaged with others in the audience to articulate the most basic of human fears that were roiling within them. Greiner emphasized that the psychological and emotional states observable in the portraits and within us as viewers represent the common threads of our shared humanity.A When patients and caregivers interact in the transfer of care at such a level of shared, common experience, the identity of both is transformed.
Artist, curator, director perspectives
The final program on February 12, 2009 featured a panel with the artist, the curator of the exhibition, Hesse McGraw, and the Director of the Bemis Center for Contemporary Arts.A In this presentation, Gilbert spoke from the artist’s point of view, emphasizing the effect that the project had upon him.A Reflecting some of the discussion at Greiner’s presentation, Gilbert spoke of the difficulty he sometimes had in continuing with the work day-to-day, so powerful had its effects been for him as he worked with patients at critical times during their lives. The caregivers also had a profound effect upon Gilbert as he felt in some manner the gravity of the work they do. As the project proceeded he found that these challenges, far from being a hindrance, were to prove the driving force in the creation of the images. Gilbert spoke of the variety of powerful emotions and states of being that he was "privileged" to witness and tried to harness.
McGraw followed Gilbert and spoke from the curator’s point of view about presenting the work to the public. He pointed out that the portraits show the basic things that are needed to build a relationship in care such as trust and respect, but added that these portraits go far beyond that to tell intimate stories in a context of care. Using this idea, he then went on to ask those in attendance how the portraits might change our notions of what medical care in the contemporary world could be. AThen Masuoka spoke from the Director’s point of view about the role of contemporary art in highlighting and informing pressing societal issues, particularly health care. He said that art has the capacity to "kill" false assumptions that lead society down false paths.A He argued that this project, as contemporary art, has the capacity to inform viewers about what care is at a human level, and to inform viewers about what care should entail.
As we enter into a national conversation about healthcare reform, an exhibition such as this is important, he said, in helping the public to address what is critical to the enterprise.AA If the views of McGraw and Masuoka are valid, and we believe they are, contemporary art carries a heavy responsibility. Yet as the microphone was passed about the audience of more than 180 people, it was clear that audience members had engaged with these heavier questions about the role of health care in our society.A It was equally clear that for those in attendance, the most critical element of care is the human element.A This of course does not eliminate the need for the more technical medical and surgical aspects of care, but emphasizes that humane judgment in the doing of care is essential.
We have found our collaboration bringing contemporary art and medicine together to be extremely rich as both a research model and as an educational approach to explore the meaning of health, illness, care and caregiving. The exhibition of portraits of patients and caregivers and the related lectures and discussions about issues germane to the portraits have helped all who participated in these events learn a great deal. Our future plans are to tour the exhibition, along with an accompanying curriculum that can highlight important ideas that arise from it.A An exhibition catalogue is also available that includes reproductions of the artworks and essays written by the project originators, the artist, the curator and Bemis Director and others as well as by a select number of patients and caregivers all of whom provide varied perspectives. We are in the process of assembling a package that will allow the exhibition art works, curriculum, and catalogue to travel to other venues to be shared. For more information, please contact either Virginia Aita (vaita at unmc dot edu) AAAor the curator Hesse McGraw atA hesse at bemiscenter dot org.
Virginia Aita, RN, MSN, PhD is Associate Professor in the College of Public Health, Department of Health Promotion, Social and Behavioral Health, University of Nebraska Medical Center (UNMC), Omaha, Nebraska
William Lydiatt, MD is a Professor of Head and Neck Surgical Oncology at the Nebraska Medical Center, UNMC, and Nebraska Methodist Hospital, Omaha, Nebraska
Mark Gilbert, BA completed a 2-year Artist’s Residency at the University of Nebraska Medical Center, Omaha, Nebraska and currently practices art in Glasgow, Scotland
Hesse McGraw, MA is Curator at the Bemis Center for Contemporary Arts, Omaha Nebraska
Mark Masuoka, MFA is the Director at the Bemis Center for Contemporary Arts, Omaha, Nebraska
Acknowledgements:A We wish to thank the following for their support of the exhibition, associated program and catalogue:
The Nebraska Medical Center
The Division of Head and Neck Surgical Oncology in the Department of Otolaryngology-Head and Neck Surgery
The College of Public Health
The Nebraska Arts Council
The National Endowment for the Arts
Commentary by Joyce Cutler-Shaw, artist; Artist in Residence, School of Medicine of the University of California San Diego
History is story telling with images embedded in memory. The history of anatomy is a history of human representation: how we are seen and how we see ourselves. Visual images are continually shaped and re-shaped by the enthusiasms and preconceptions of the present. The visual representations of the history of anatomy are an extraordinary record of our evolving self-images, public and private, cultural and social. As historian Martin Kemp has written, in observing the connections of medical science and art, "No field is richer in metaphor than the body." (1)
Body representation has been a significant feature of human visual culture from stick figures and handprints of pre-historic cave paintings to medieval illustrations; from Renaissance drawings of human dissection by artist/anatomists from Leonardo da Vinci to George Stubbs; from Rembrandt to Thomas Eakins; from the early 20th century European disease study waxes to the newest, digitally developed, life-like models with touchable, veristic, simulated wounds for training battlefield first responders - and from the virtual body of the Visible Man to the artist Virgil Wong’s eponymous "Pregnant Man." Arthur Danto has written in The Body/Body Problem, that representation "brings something to the world it would otherwise lack - a point of view, with reference to which objects are transformed into instruments and obstacles and hence, systems of meanings." (2) Exploring across the disciplines of art and medicine I have discovered the medical field to be an arena for the newest forms of body representation. It is at the intersection of art and medical science that new insights in interpreting the physical self can emerge. Moreover, no field confronts issues more contentious than the medical such as when life begins and when it ends, and the limits of normalcy and the aberrant.
The Anatomy Lesson
My project titled, The Anatomy Lesson, is inspired and informed by my role as Artist-In-Residence at the School of Medicine of the University of California San Diego.A UCSD has been a leader in medical humanities and the first medical school nationally to appoint a visual artist for an independent fine art residency. I am honored to have been selected. The Anatomy Lesson is an exploration of the physical self and the human life cycle from birth through the process of aging and death- an odyssey of individual transformation common to all living things. It is also an investigation since 1994, of aspects of the history of anatomy by visiting great medical collections in our country, in Europe, China and Japan.
Medical models have depicted and re-shaped our body image through the centuries. The medieval cosmological metaphor of Zodiac Man was astronomically determined when we were creatures of humours and bile. The 16th century anatomist, Vesalius, and others of that time, made an argument for anatomy as a holy and divine art. Interpreting anatomy within a theological context was to "seek to 'know thyself’ by recognizing that God is present within the human body."(3) We were worthy of study and the body was open to investigation in order to understand the secrets of life. With the Renaissance and the emergence of the practice of dissection - of the "open body" - artists began to depict the anatomical figure, in human scale, as dynamic and dimensional. Leonardo da Vinci, pivotal artist and anatomist of the 16th century, opened the body labyrinth, even to initiating the anatomical positions and the cross section -which are still standards today. He drew the open torso as a body fragment with the fetus in utero, umbilically connected and close to term. Studying the body in specialized sections is current medical school practice, just as medical specialization is standard practice in contrast to holistic medicine.
Fragmentation is typical of the postmodern period as historian Linda Nochlin argues in her book, The Body in Pieces. (4) I have seen recent medical texts without a single whole body image.
In the 18th century gifted Italian craftsmen and a noted woman, Anna Morandi Manzolini, a professor of anatomy, an unusual role for a woman at that time, created life-size and life-like figures of painted wax with the texture of skin. They are still on display in medical collections at the University of Bologna, La Specola in Florence and the Josephinum in Vienna, Many were presented in the typical seductive poses of their time, as a reclining male odalisque, a "vein man," and as a reclining female nude, her arm gracefully bent beneath her head, with long blond hair, earrings and necklace of pearls, with open eyes and open abdomen.
Historically, the anatomical model has been male. Anatomical depictions of women have featured the uterus, often with fetus in utero, as childbearing remains a primary interest in women’s bodies, even depicted without the woman. Before the 14th century, when life and death formed a unity, medieval woodcuts depicted the fetus as a miniature person - a little adult - fully formed and seemingly, free standing. As the practice of dissection emerged the anatomical figure was presented in human scale, as dynamic and dimensional, with a search for physiological precision. The nineteenth and early twentieth centuries, brought the X-ray and metaphors of transparency. The surprise discovery of 1896, the X-ray, the "new light" as it was called, revealed for the first time, the hidden recesses of the living body. I traveled to Dresden to the Hygiene Museum to see the first transparent "Visible Woman" which revealed internal body parts. She is molded in the yellowing hard plastic of the early 20th century and placed on a pedestal with arms upraised. She is life-size. Contemporary models in the art and medical worlds raise new issues of human scale, as it escalates in the postmodern period to the gargantuan.
Today we can walk the 50 foot length, head- to- toe, of a contemporary anatomical model at the California Science Center in Los Angeles. Called "Tess," a glowing red light illuminates the interior architecture of the enormous bald head. The whole "body" is a cage of plastic and metal and blue-green retractable panels of hard "skin." See-through windows with flashing lights reveal the huge internal moving parts. She is ten times human size. We are the equivalent of a fetus or tumor in this labyrinthine figure. One hundred and twenty people can surround and view this supermodel at one time. To what degree can we identify and illuminate our own bodies with models of this scale and glitz? And what does it mean to lose our sense of human scale when exaggeration is as much a keystone of public attractions as it is of the grotesque? In Philadelphia at the Mutter Museum, the extremes of human skeletal form are displayed side-by-side in a circular case as curiosities with a circus sideshow feel.
Today we have sonograms and C-T scans, MRI’s and PET scans to view the internal body in real time, and which require informed visual reading, as, in fact, do figurative images in any context. Analysis is interpretation, as when a subject, a woman in labor, for example, becomes an object. In a contemporary delivery room, a woman in bed is typically wired to monitors, which continuously display her vital signs. Seated next to her, a nurse gently moves a mouse across her abdomen while diligently watching the screen to monitor the performance of the fetus. That is, if she has not been replaced by a virtual nurse as in some hospitals in Japan. What does it mean if a woman’s body processes are well attended, when she herself is ignored?
Our western historical tradition has focused on a physiological creature of flesh and blood, of skin, viscera and body fluids on an armature of bone, our embedded skeleton as primary structure. However with the arrival of the x-ray we could skip the knife and see through skin to bone to see a mysterious realm of tonal gradation. The rigorous training of radiologists in the strategies of visual reading often surpasses that of contemporary visual artists. In our era with advancing technologies of medical visualization, (computed tomography, magnetic resonance imaging and positron emission tomography) of photonics and bio-photonics, we are losing our physical selves. We are being reinterpreted through medical imaging at the forefront of body representation, dramatically demonstrated at annual conferences, such as "Medicine Meets Virtual Reality." (5) With the advances of remote, robotic surgery the eye-hand co-ordination of 8 to 12 year olds from playing video games is training them in the requisite skills of today’s and tomorrow’s new surgeons. Advanced medical schools are even considering robotic surgery as a specialty training program - for the Da Vinci Surgical System, for example- that would be separate from the standard four year medical school curriculum for medical doctors. Such specialist surgeons, operating from remote locations, even different countries, would not even have to meet the patient.
The contemporary Visible Human project is the result of a very costly, highly complex process, whereby a self-donated criminal cadaver has been micro-sliced and digitized and made available from the National Library of Medicine as a distribution base for an extensive range of independent programs for medical study. Medical schools and research labs have developed 3-D Virtual Reality Anatomy programs of the Visible Man and Visible Woman. Now we can exchange a physical self for a 3-D virtual reality display on a 2-D.screen, at a time, when for economic, rather than practical reasons, some medical schools are abandoning their established anatomical dissection programs for computer and real-time laboratory demonstration dissection. However, what is lost is the powerful hands-on sensory experience of the unpredictable, individual physical self. After all, no two bodies are alike, many with remarkable differences, which cause huddles in the anatomy lab.
We can now study the heart with goggles and magnetic finger tipped gloves. We can enter the rib cage, zip into the inferior vena cava, orbit the chambers and valves, and ride the looping Perkinge fibers, conveniently colored yellow. We can enlarge the image until it seems to emerge from the screen. It was illuminating to discover that, to develop this display at UCSD, advanced drawing skills were invaluable in visualizing and programming the quarter turns of body parts, as the available 3-D imaging programs were inadequate. The scale is variable and we can enlarge to room size in a total surround. That is, if we can afford the equipment to do it.
We now have the option of a cosmetically reconfigured self within our evolving social/cultural/medical and genetic age of cyborgs and avatars. With photonic and bio-photonic imaging we are represented as scans and graphs, as neon colored printouts of body hot spots, and as linear genetic arrays, in effect more virtual than physical. Even in death we have more options than burial or cremation. We can be cryogenically frozen or plasticized as the plasticized cadavers of Gunter von Hagens’s "Bodyworlds" and its offspring exhibits of "The Body."
Our challenge is to understand and respond to the implications and consequences of these advancing phenomena that culturally define us. It is because we are still here, in our skin, embodied and temporal, transforming physically over a lifetime, even as a reluctant public takes the adversarial position of refusing to accept that we are of nature,A that we age and die. I argue for the immediate and the visceral because I believe that the life we have is an evolutionary gift, and that, at whatever our stage of life, we, in ourselves, are a unique demonstration of that vital process. We are the perfection of ourselves.
Note: This commentary has been abbreviated from a paper presented at a 2009 College Art Association Conference Panel titled "Clothing, Flesh, Bone: Visual Culture Above and Below the Skin," Co-Chairs, Sarah Adams and Victoria Rovine.
1. Martin Kemp, "Medicine in View: Art and Visual Representation", Western Medicine: An Illustrated History, ed. Irvine Loudon (New York: Oxford University Press, 1997) p. 11.
2. Arthur C. Danto, The Body / Body Problem (Los Angeles: University of California Press, 2001) p. 14.
3. Walter Schubpach, The Paradox of Rembrandt’s 'Anatomy ofA Dr. Tulp’ (London: Wellcome Institute for the History of Medicine, 1982) p. 31.
4. Linda Nochlin, The Body in Pieces: The Fragment as a Metaphor of Modernity (New York: Thames and Hudson, 1995).
5. Medicine Meets Virtual Reality 17, NextMed: Design for/the Well Being. Medicine Meets Virtual Reality is an annual conference on emerging data-centered technologies for medical care and education. It includes The Well, which merges formal exhibits with casual demonstrations and The Salon, which mingles the visual arts, science, and medicine.A January 19 - 22, 2009. The Hyatt Regency Long Beach, Long Beach, California
Commentary by Ana Blohm, M.D., Assistant Professor of Medicine, Mount Sinai School of Medicine; physician in Mount Sinai’s Visiting Doctors Program; co-director, Humanities and Medicine Program in the Division of General Internal Medicine
"Is it OK if I take your picture?"
"Of course Doc, you can do anything you want."
For almost five years I have been taking care of homebound persons in upper Manhattan. The majority of my patients are elderly and frail, the rest are disabled by the advanced stages of chronic or terminal medical illness. A small minority suffers from psychiatric illness that prevents them from leaving the home. At any one time, I care for approximately ninety patients and I see them at regular intervals in their homes. If it weren't for our Visiting Doctors Program, these people would mainly be getting medical care through the ER, often when it is too late to affect the outcome of the acute event that brought them there.
Also for five years, I have been photographing many of these patients. It is impossible for me to clearly articulate why I started to document my visits, except to say that for me it seems more inexplicable not to photograph the world my patients live in.
From Chart to Art
At first, I started taking Polaroids to help inform the medical history. We are a group practice and often care for each other's patients over the phone, and in such a setting a photograph can be an invaluable aide in medical decision-making. The photos also helped me recall my patients when I was new on the job. I didn't think twice about the propriety of taking these pictures, they were an invaluable part of the medical record and were only used as such. The consent form was signed as a bureaucratic formality.
Almost immediately, I started to appreciate the Polaroids aesthetically. There was something touching in my patient's expression, something timeless in the corners of the room that were visible in the background. I found myself composing the images deliberately; I tried to include a colorful quilt, a glowing Christmas tree, a stuffed animal collection.
On my end, this still implied no conflict. Despite the fact that I was taking some artistic liberties, the photos of my patients remained destined for the chart as a useful part of the medical record; I was just having more fun at it. And again, the consent form was completed and never thought about again.
The Polaroid project ended when our practice adopted an electronic medical record, and at around the same time I upgraded to a digital camera. It would not be entirely truthful to say that this was just to continue to get images into the medical chart; by this time I had been overcome with a compulsion to photograph my patients and their home environment.
I took my camera along with my doctor bag, and after completing the medical visit I would sometimes ask for permission to photograph. Often, the patient caught unaware would say "next time" and I would return to find them dressed up with a wig and make-up, the bed perfectly made, and the apartment cleaned and dusted. This often altered what I had liked about the scene initially, but at least it validated for me that my patient had understood the far-reaching implications of my request. So I photographed sometimes for them, and sometimes for myself. But clearly, a line was drawn, and these pictures were no longer for the chart.
Some of the portraits became teaching slides for students and residents, figures in journal articles, illustrations for our program's brochure, and images that helped in raising funds needed to help maintain our program. One photograph was reproduced and used by the family of a patient as the picture for her funeral service; another one became a Christmas card. On my end, I hesitantly began to show the images of my homebound patients in my photography classes, and started to wonder if I would ever find it acceptable to myself to publish them in entirely non-medical and non-academic arenas.
My Patient/My Muse
Over the years I have cared for hundreds of patients and photographed less than thirty of them. I limit my portraits only to those patients that I judge can give informed consent in the truest possible sense, and I only ask patients that appear to be extroverts and empowered enough to say "no" to me. I make it clear that I am taking a picture because I like what I see: the person, their room, or their belongings, and that it might be shown to others outside Mount Sinai. I do not ask surrogate decision makers for permission; if my patient is incapacitated I can't allow myself to make their portrait, period.
I discard photos that are unflattering, and all that seem to be ironic, sensationalistic, or morbid. I am vigilant about avoiding "illness pornography." Occasionally I will open the blinds or move something out of the camera's way, but I do not compose scenes, direct my patient to pose, or place anything in the photo that is not there. After I photograph, I bring a copy of the photo as a gift and again ask for permission to share it with others. Finally, I embrace my institutional subjugation by asking my obliging patient to sign (originally two, now three) HIPAA forms.
My consent standards are higher than those of the average photojournalist or fine art photographer, and yet, I get butterflies every time I think about what I am doing. Why is that?
I suppose the answer lies in the fact that I feel that it is easy to be "ethical" in the trivial sense: ensuring informed consent, respecting confidentiality, signing forms, etc, etc. But ethically speaking this is low-hanging fruit, and being satisfied with this level of compliance is a sign that one is missing the actual moral issues inherent in patient photography.
My patients are often surprised about the way in which I ask to take their picture. The majority seems to feel that all my explanations are unnecessary… after all: "it's just a picture not a blood draw." And often enough, for most of them, that is all it is: "just a picture." The reality is that most of them have more important things going on in their lives than to care about pleasing their doctor, about whether an image of them will be floating around the world, or about the subtleties of whether their consent is truly informed. But there are a few patients that deeply desire to be "good" for me and they probably feel that this includes being agreeable to my eccentricities. Despite the power differential, although plausible, I don't think this is an issue of them feeling that if they were to object they would loose me as their doctor or that it would affect the quality of the care I will provide. It is simply that they value our relationship and genuinely wish to help me. But by placing them in this situation I may be overstepping my boundaries as their doctor.
Ethics and Aesthetics: What Now?
How should I approach this dual role as a physician and a photographer? Are the ethical standards higher for me than they are for a healthcare provider taking a teaching photo (say, documenting the medical care in an underdeveloped country)? Are they higher for me than for a photojournalist illustrating a story on healthcare? (1) And interestingly, is there something inherent in photography that makes it a more "objectionable" artistic pursuit for a physician than writing about a patient, or even sketching, painting, and sculpting the likeness of a patient? The answers are yes, yes, and yes.
A physician that photographs a patient for illustrating a journal article is first and foremost a healthcare provider; a journalist reporting in healthcare is first and foremost a journalist. The roles in these cases are clear, and there are no expectations beyond the obvious ones associated with the interaction. Doctors involved in the arts do grapple, consciously or unconsciously, with competing and sometimes opposing drives: a situation that is approached medically is often experienced aesthetically and vice versa.
More has been written about ethical and moral principles to guide physician-writers than to guide any other physician-artist. Rita Charon argues that patients own their story and we must seek their approval before we publish any literature in which they might be recognizable, even if only to themselves or to close relatives. (2) This may not be applicable to all types of medical stories (for example medical errors) or to all patients (the "difficult" patient, the psychiatrically ill, or those for whom disclosure may be distressing), but it is a good general rule. Dr. Charon states there can be a therapeutic value in sharing a story with the patient that inspired it, and I find a similar value for patients and their caregivers when I bring photographs into the home.
The ethical question in writing fiction, non-fiction, and creative non-fiction, is not necessarily about the propriety of using your patients as inspiration for artistic work-it has more to do with the subsequent dissemination of your aesthetic output. The issue becomes one of privacy and of authorship. If privacy is protected by changing recognizable facts, then at what point are the particulars altered so much that the distinction between fiction and non-fiction becomes absurd? If the fiction is tinted with the hue of a real interaction, then is the physician-writer guilty of thieving (3) from her patients for the benefit of her characters?
Photography by its very nature multiplies the issues privacy, confidentiality, and authorship. More than a sketch or a painting, a photographic image implicitly tends to be equated with reality. What can be more real than what we see with our own eyes? Some practitioners of the art even gave photography the power of being more "authentic" than reality itself. Photographer Edward Weston spoke of achieving "the stark beauty that a lens can so exactly render… without interference of artistic effect." (4) But the whole reason photographs are powerful and bewitching is precisely due to this "artistic effect" coupled with the cultural and social contexts in which the picture is made and subsequently viewed.
In photographing my patients and their home environment, I am harnessing their aesthetic to fuel my own. They arranged their clothes, their bed, their couch, and their paintings a certain way, and all I do is respond to the scene visually by composing a photograph in a way that was interesting to me.A Again, I am facing an issue of authorship akin to that of the thieving physician-writer.A And even worse, in terms of confidentiality, what can be more sacred than a patient-physician interaction in the privacy of the patient's own home?
Embracing the Gray Areas: Incorporating Ethical Conflict into the Work
All these issues are troubling to me, and yet I continue to photograph. My thinking is precisely that if I ever cease to be troubled by what I do, then I will have reached the point at which it would be morally wrong from me to continue the project.A I try to navigate this ethically grey area by choosing my subjects carefully, by seeing my patient as my collaborator, and by being candid about my motives.A Transparency is key for achieving what I would call "artistic" informed consent (there is no form to sign for this one.)
I enjoy showing my patients and their caregivers the images we make. Overwhelmingly, the response is one of amusement, and the snapshots tend to get a lot more attention than the "serious" work. But occasionally there is a deep appreciation of being shown their own environments in a different way: "I didn't know it looked like that!" "Who would have thought my room looks so nice?" They may never enjoy the print for the same reasons I do, but at least we will have reached an understanding that there is some meaningful value in it for both of us.
Ultimately, the validation comes from seeing the growing Ana Blohm collection of photographs on the walls of my patients' homes.
(1)See for example the work of Eugene Richards and Nicholas Nixon
(2)Charon, Rita. Narrative Medicine: form, function, and ethics. Annals of Internal Medicine. 134:83-7 (2001).
(3)Baruch, Jay. The Story Always Comes First. Commentary in Literature, Arts, and Medicine Blog. October 17, 2008.
(4)Weston, Edward, In Newhall, Nancy, ed. The Daybooks of Edward Weston, Volume II, p. 147. (New York:Aperture) 1973.
Commentary by Jay Baruch, author of Fourteen Stories: Doctors, Patients and Other Strangers (Kent State University Press, 2007). Assistant Professor of Emergency Medicine and Director, Ethics Curriculum, at the Warren Alpert Medical School at Brown University
Question: What do you call physicians who write?
This particular quip rings funny to me-and perhaps only to me. It riffs off of Kurt Vonnegut, who swathed this gem in toilet tissue in his book Timequake.
Question: What is the white stuff in bird poop?
Answer: That’s bird poop too. (1)
Like a skilled physician who distracts the patient to minimize the pain of injection, Vonnegut knows how to bury sharp insights in silliness so the reader never feels a prick.
Regardless of the color, whether it lands on your head or windshield, its still bird poop. That’s how I feel about being a physician/writer. One part cannot be extracted from the other. There are no smooth fascial planes along which to dissect, no separate and distinct blood supplies. Principles and moral values guiding my bedside responsibilities and behavior somehow feed into the slow meandering act of writing about them. I have trouble finding a physical and emotional distance that is far enough from this moral tug.
How does this commingling manifest itself?
When I write doctor stories, I write fiction. Over the years, this unconscious decision has nonetheless been buttressed by three dominant justifications: patient privacy, trust and potential abuse of the physician/patient relationship, and my belief that the story always comes first.
Thieving and the Physician/Writer
I’m very uncomfortable writing non-fiction or creative non-fiction (a genre I’m still trying to understand). Writing about "real events" and "real people" from my role as a physician makes me feel like a thief. For me, you can dress up real patients, bend and twist them like balloon animals to alter identifiable details, and yet fail to alter enough core narrative slivers. It’s not only what’s changed, but what remains that’s concerning. The female in life becomes a male on the page, the Latino kid on crutches is now a Korean in wheelchair, the bald guy preens about with a Mohawk. But too much faithfulness to the real, protection of the factual, the writer risks missing dustings of critical evidence, like fingerprints, or hair and skin spiraling with DNA.
Why this thieving feeling?
The physician-patient relationship is tender and complex, charged with issues of vulnerability and power. Privacy and confidentiality are ambiguous and complicated values in today’s society, especially in a time of media overexposure, reality TV, and the "Wild" Wild Web. The house of medicine is one arena where foundational values and laws from Hippocrates through HIPAA have clearly drawn the lines around privacy and confidentiality.
Question: What do you call patients in medical narratives?
The Emergency Department: Writing and Rapid Trust
I often wonder if my specialty and sphere of medical practice deepens my sensitivity to the moral issues at play in the physician-patient relationship when I’m writing. Part of the demands of emergency medicine involves caring for sick strangers. A large part of that challenge involves building rapid trust. Not many people know about my creative work, but local reputations develop. I don’t want to risk the perception from patients that I might use them for personal purposes. I don’t want patients to guard sensitive medical information valuable to their care out of fear the physician/writer is listening with different ears. Patients must feel like the subjects of my gaze and attention, not as objects.
After all, I’m billed as a physician, someone bound by the Hippocratic Oath (or at least a less misogynist version of it), someone duty-bound to place patients first. The ID hanging from pocket reads MD, not PRESS. A stethoscope hangs over the back of my neck. I don’t carry a long, skinny reporters’ notebook. I don’t wear a coffee-stained sport coat. I wear a coffee-stained white coat.
Jack Coulehan and Anne Hawkins have written cogently about the ethical considerations facing physicians who write about their patients and the potential impact on the physician-patient relationship. (2) How would the patient react if he or she learned they were written about? Rita Charon has argued passionately that patients own their stories. Respect for patients demand they give consent for use of their stories. (3) I’ve beenA rereading their profound work and those of other health care providers and scholars the past few months as part of a project on the ethics of medical blogs. I recently lectured to medical students on this subject, and grappled to find a closing nugget for them to chew: The best I could do was this: Physicians must care for patients on the page, too.
The acute, short-lived, compressed form of my physician/patient relationship poses certain challenges to obtain permission. So I try to avoid the need for permission altogether.
The Medical Story as a Black Box
But more than the many moral concerns stated above, my decision to write fiction is dictated by the demands of the particular stories I’m trying to write. Fiction permits me imaginative freedom to plunge into confusion and discomfort, to ask questions that typically pull me far away from the real in attempts to pin down certain truths.
What is driving my desire to tell this story? Whose story is this? What’s at the heart of this story? How much and what part of this story earns space on the page, and what lives above the words, a past and present only I’m privy to. Once I make these decisions, write drafts, change my mind and kill more trees, I ask these questions again. Why am I writing this story?
George Saunders, fiction writer and essayist, describes art as a black box into which the reader enters in one state of mind and exits in another. The reader should exit a story altered somehow, feeling that something "undeniable and nontrivial" had happened. (4) The writer doesn’t get points for accuracy, for filling the box with facts and details. The writer must aspire for a more transformative experience. The poet Tess Gallagher alluded to this when describing the purpose of language in poetry. "To enter emotional spaces on terms that are original." (5)
Emotions pull me into a story, as well the desire to understand particular human behavior and to effectively communicate that which surprises and disturbs me. The medicine practiced in my stories must be accurate. But the characters and events, the narrative bones, aspire to a "story truth," more than a "happening truth." (6)A Tim O’Brien, in his stunning book, The Things They Carried, argues that if the reader identifies with the plight of the characters, it shouldn’t matter whether events are true. The truth is felt in the reader’s gut. Sometimes invention is necessary to clarify and explain. (7) It might be the contradictions between what happens, what is expected to happen, and perhaps, what should happen. I set off on unexplained and unexplainable detours. The factual details fall away. What remains are inventions, people and conflicts and histories absent at the beginning, fueled by tension and emotional engines.
The Importance of Wandering Far From Where I Started
I play with points of view, which removes any pretension of veracity. An example: many versions of my short story, "Road Test," were written through each character’s eyes, only to come to life when I realized this ER story belonged to the janitor. Only through his eyes was the conflict between the homeless drunk and the young doctor drawn most acutely, permitting the reader the most intimate and unbiased access to the complicated and often ugly thoughts and emotions that compelled me to write this story. It reads as a "real" event. The doctor and the homeless man weren’t drawn from particular people, but their actions and feelings and fears are painfully real.
Recruiting different voices in medical situations opens the story to moral opportunities. When the writer is a physician, the patient’s experience is channeled through, and controlled by, the physician. The narrative choices belong to the one with a stethoscope and a pen. One of my great challenges in the writing craft is developing the empathy, the curiosity and confidence to inhabit lives most unlike my own. Should I fail to create convincing characters, it’s not for lack of interest or desire, and I hope my respect for these persons seeps through.
Fiction gives me room to wonder and wander. I’m allowed to shape a medical situation, hold it up to the light and twirl from side to side. Take the man dying of cirrhosis, his domineering wife hot with disdain for doctors and demanding narcotics for her husband’s pain. These two individuals are at the center of my story, "Thin Walls."
Even the most unlikable people harbor a measure of kindness, and finding it is my mandate as a writer. Many difficult patients and family are sympathetic, calm and reasonable people who become unhinged or uncontainable only when they encounter the health care system, or the person in the white coat. Maybe every test I run brings them one step closer to bankruptcy. Maybe the wife’s scared to lose the love of her life. Maybe her pushiness is the only semblance of control left to her. Maybe she and her husband share an unhappy marriage. Now he’s dying, ramping up the misery?
The start of any medical story, at the bedside or on the page, always begins elsewhere. The "real" medical incident that set me off writing this story happened almost two decades ago, a moment that somehow, in the discovery of writing, led me to the two people mentioned above. I was an intern, holding a young child brought to the hospital for neglect. I don’t remember the details of the case. I remember the child’s empty eyes, the way his inert body slipped through my arms, his frail body awkward and surprisingly heavy.
I imagine what my invented characters would say if they read about themselves. I don’t necessarily want their approval-I’m often hard on them-only their acknowledgment that I had been fair and honest, that due diligence had been done to understand as completely as I could unflattering and embarrassing behavior.
Fiction and the Physician/Writer: A Weak Crutch?
There are limitations in writing fiction. Making up experiences might fail the reality test, be viewed by some as lacking validity. Physicians who write in non-fiction genres often become central characters in their work. That takes a great deal of honesty, courage, and skill to compose such narratives. I respect and admire many physicians who have created books that glow with compassion and insight. Perhaps I open myself up for criticism by removing myself from the action, by dispersing dark moments and emotions onto other characters, and making these fictional others bear my burdens.
Critics might also argue that writing fiction doesn’t absolve me entirely from accusations of feeding off my physician-patient relationships in my creative work. Henry James wrote of the "perfect dependence of the 'moral" sense of a work of art on the amount of felt life concerned in producing it," and the "kind and degree of the artists’ primary sensitivity which is the soul out of which its subject springs." (8) The intensity of a clinician’s work, the consuming, unshakable nature of the interactions, contributes to my "felt life."
In Conclusion: The Physician/Writer is Still a Physician
I want my characters, and my work, to resonate with readers, because they are all potential patients. Should readers come to my emergency department, I hope they will be comforted to learn that this writer will be caring for them, and they will trust the physician.
The process of writing fiction allows me to discover emotional truths about characters and myself that would have remained unearthed had I obeyed a chronological or factual accounting of events. Referring back to Saunders’ metaphorical black box, I aspire for readers to enter a story and emerge altered in some way. For me, that can only happen in the work of writing drafts, and remaining open to possibilities. The journey takes me to an unexpected territory far from where I began, from the place where words are chosen with great care, from my pressed white coat, my hospital ID hanging for all to see.
1. Vonnegut K. Timequake New York: G.P Putnam’s Sons, 1997 p.142
2. Coulehan J, Hawkins AH. Keeping Faith: Ethics and the Physician-Writer. Annals of Internal Medicine 2003;139: 307-311.
3. Charon R. Narrative Medicine: Form, Function, and Ethics. Annals of Internal Medicine 134;2001: 83-87.
4. Saunders G. "Mr. Vonnegut in Sumatra" in The Braindead Megaphone. New York: Riverhead Books, 2007. P.78
5.A A Piece of Work: Five Writers Discuss Their Revisions, ed. Jay Woodruff.A Iowa City: University of Iowa Press,1993. p.68
6. O’Brien, Tim. The Things They Carried New York: Penguin Books, 1990.p.203
7.A Ibid, p. 180.
8. James, Henry. Preface, The Portrait of a Lady. New York: Modern Library Paperback Edition, 2002: p. xxiii.