Medical Photography Exposed- Part 2

September 18, 2015 at 1:24 pm

In Part 2 of her interview with Katie Grogan, Emily Milam discusses how photography is used in medicine today. For Part I, click here.

As a second component to your project, you surveyed dermatologists nationwide about their use and opinion of medical photography. What did you discover about current practices?

Current practices vary depending on the clinical setting and the specialty. I restricted my survey to dermatologists because it is a population that relies on regular use of medical photography. I also chose this group because I do clinical dermatology research, so I have greater access to that population. But plastic surgery and other subspecialties that are particularly visually-oriented also rely on medical photography. To be honest, most fields use medical photography or images in some capacity, whether it's CT scans, MRIs, endoscopic images during a colonoscopy, intraoperative images of a patient's abdomen - these are all forms of photography to some extent.

The goal of the study is to better characterize the use of medical photography, including issues of technology, image storage, consent, and patient privacy. Despite its ubiquitous use, little is known about how photography is employed in the clinical setting.

Is there any formal training for medical professionals to encourage universal responsible photography practices?

To my knowledge, there are very few formal training opportunities. There are courses at national meetings, and some residency programs teach basic photography skills. There are also a handful of review articles in academic journals and CME courses that guide readers on how to focus a camera and things to keep in mind while taking photographs. Some medical centers are fortunate enough to have a professional medical photographer on hand who can take that expertise and apply it to patients throughout the hospital instead of having to rely on physicians. Also, with the advent of telemedicine, there is a focus on training physicians to be skillful photographers so that the images are clear and accurate representations of the disease that they are trying to transmit. I think there is still room for improvement. Medical photography tutorials should be a required component of training for many specialties, especially within the visually-oriented fields such as dermatology and plastic surgery. Beyond teaching students how to use digital cameras and take images that are in focus and with adequate light, it is also important to teach them how to drape a patient properly, what should and should not be included in the image, to remember to remove identifying jewelry and to cover tattoos and avoid the face if it is not the subject of the photo. I think that this is a benefit to everyone because oftentimes you can't publish photos that don't meet those criteria anyway. Other important tips are to place a ruler next to the lesion of interest for scale or to take follow up images at similar distances and angles so that they are more comparable. You'd be surprised how few photographs fulfill these criteria, including images published in some of the best academic journals.

Today, when a medical photograph does feature a patient's face, are there steps taken to protect that person's identity?

That's changed in recent years. At the end of the 20th century - the 70s, 80s, 90s - it was very common to put a black bar over the patient's eyes after the picture had been taken, using a computer to pixelate the image, or some other post hoc editing changes. It was later determined to be kind of silly - you can still tell who's who in a photograph with the eyes covered. So the focus now is on gaining consent, making sure the patient is informed about how their photograph is being used, doing the necessary paperwork, and if the area of interest is the face, including the face - eyes and all. There is greater emphasis placed on making sure the patient is fully aware and on board with how their photos are being used.

Medical photography can really come to bear on patient-physician trust then, right? How do you think it shapes this relationship?

I think that the relationship between patient and physician can go either way. In the modern age of technology, in some sense, patients expect their photographs to be taken, especially if it's for a procedure where they're looking to have before and after differences, or tracking their disease over time. But in the end, to maintain trust, it's important for the physician to fully communicate what they intend to do with the photograph, why they need it, and where it's going to be stored. Otherwise patients may be skeptical or distrustful, and it might make them nervous to come back. There is actually a study by dermatologists at Bellevue and NYULMC clinics, where patients were surveyed on their perspective of medical photography. In that survey, a majority of patients agreed that photography enhanced their quality of care, and they were okay with it. And they were okay with their photograph being used for medical purposes, for their continuity of care, teaching and research purposes, but particularly when the photographs were not identifiable. The study also found that patients preferred the use of clinic-owned cameras above personal cameras or smartphones. They preferred physicians to take the photos and not nurses or medical students. While patients are open to medical photography, there are some things that we need to be mindful of to make it comfortable and to continue that trust and even empower that relationship.

What do you think patients should be aware of when they are asked to be photographed?

I think they should know what their images are being used for, whether that's education, publications, part of their historical medical chart, or medico-legal purposes. This communication should be part of the informed consent process prior to taking the photograph. But obviously in the rushed world of clinical medicine this doesn't always happen. I think if patients understood that their photographs are a benefit to their clinical care as well as a useful instructional tool to trainees and journal audiences, they would feel more comfortable with the process and perhaps even take pride in their involvement. In fact, I've written a few case reports as part of my medical research, and I've found that a couple of patients were very excited to be a part of a journal and to be helping in some way, even if it showed them with a strange rash.

And when a patient consents to have their photograph taken in a clinical context, what does that mean for ownership of the image? Whose property is it?

That's a good question. It is very hard to say because when a patient agrees to have their image published in a journal, it is very difficult to take it back down the road. So you can argue that a patient no longer has control of the image, especially on the Internet. Once it's on the Internet, it's very hard to extract.

As the third and final component of your project you examined creative portrait projects that feature individuals who have visible diseases aimed at reframing the way we see them. What is different about portrait photography and contemporary medical photography? Why do you think photography is such a powerful medium for raising our consciousness?

Creative portrait projects have provided patients the opportunity to be the subject of art and not just the subject of clinical attention in the medical gaze. It allows them to reclaim their appearance and feel special rather than peculiar. That can be very empowering. These projects are important not only because they empower the portrait subject but also because of their rippling effect in empowering others with similar disfiguring diseases who see the portraits and then can identify with the portrait subjects and say, "There are other people out there like me." It's also important for people who are not disfigured to see the diversity of appearances.

Outside of this project you enjoy photography and documenting your experiences through pictures. Does this inform the way that you see patients? Are you observing your surroundings through multiple lenses, from medical and artistic standpoints?

Absolutely. When I observe clinicians taking photographs of patients or when I'm tasked to do it myself in the medical office, I can't help but consider the principles of perspective and depth of field that I learned in college photography. I can't help but look at the subject and the surroundings as kind of artful in some way. But I also have to remember that medical photographs, when used in clinical medicine, are not intended to be artful. They are supposed to be accurate representations of disease that convey clinical truths. There are two different sides of the coin, and I'd like to think that my interest in photography helps medical photography. I'm able to bring images into clear focus and center the photograph and make sure they are standing appropriately and able to consider the aesthetic elements that are helpful for the clinical needs or the purpose of the photograph. But sometimes it's hard not to want to play around and do creative things.

I hear the distinction you're making, but I wonder if those two things can really be so separate - where a medical photograph is completely objective and doesn't involve the subjective elements of perspective and framing.

I totally agree and in the end you're photographing a human, so you're seeing a human - whether that's through an objective medical gaze or you're peering into what they might be going through because of the malady they have and the reason why they are being photographed. So I don't think they can be separated. I think they go hand-in-hand and are kind of a composite entity.

From this whole process, going through all the photos you studied, do you have a favorite image that really spoke to you and maybe captured the spirit of this project?

It's hard to pick one, but one of my favorites is a photo taken by the medical photographer at Bellevue that I mentioned, Oscar G. Mason. My Rudin fellowship mentor, Dr. Oshinsky, initially told me about the photograph and I think it perfectly encapsulates the purpose of my project, not to mention its historical link to NYU. This photo, nicknamed "The Bellevue Venus," shows a young woman with a debilitating case of elephantitis of the legs. It was published by George Henry Fox in his dermatology atlas, Photographic Illustrations of Skin Diseases in the 1880's. What is striking about this photo is the way the subject has a cloth draped over her head and is covering her exposed chest, perhaps out of modesty or shame, or to protect her privacy or anonymity, yet it is such a clear representation of disease at the same time. You can almost imagine the overlap of the physical and psychosocial distress in this one image.


"Bellevue Venus," photograph by Oscar G. Mason, The Bellevue Photographic Department

The fellowship year is about to end, and I understand that you have a few manuscripts in the works. What are you working on, and what do you imagine to be the future of this project?

I did have a paper accepted for publication, and it should be coming out in JAMA Dermatology in the next few months. It's a historical survey of the first dermatology atlases, after photography was invented. In this era, many of the photos were hand painted by artists to give color to the otherwise black and white images. I also discuss Oscar G. Mason and George Henry Fox's dermatology atlas. I'm working on a few other pieces for publication, including one on the psychosocial implications of one's appearance and society's "beauty biases." I'm also working on a manuscript that discusses, in depth, the legal cases that have shaped medical photography and the current guidelines we have today concerning consent and image security. Finally, I've also compiled a list of portrait projects that exist, showcasing different visible ailments such as alopecia, vitiligo, and craniofacial conditions. I want to have that on a site where people can find them and look through the images and feel empowered.

I want to take photographs of patients at some point. It's been interesting how some of the issues I've researched have been a barrier in my ability to take photographs of patients, such as concerns about image and privacy and anonymity. I still hope to have the opportunity to photograph patients and give them the chance to be the subject of art.

And, finally, you're planning to go into one of the visually-oriented fields of dermatology, so how do you imagine both your interest in photography and the knowledge you've gained from this project will shape the way you integrate photography into your practice?

Well, for one, I definitely hope that photography is a large part of my practice, and that means taking photographs of patients to track their disease progression or to use in educational materials. But I'm going to be very aware of the patient's experience in that process and make sure that I am clear and forward in what the photographs are going to be used for and provide patients the opportunity to opt out. I also want to help create educational tools or teach my future colleagues how to take photographs correctly. I see that on the horizon. Once I'm a physician, I will have built relationships with my patients and may have an easier time taking photographs of them - both clinical and creative - and they won't just come to me for their medical illness.

Medical Photography Exposed - Part I

September 9, 2015 at 12:44 pm

An Interview with Emily Milam, MS4, NYU School of Medicine, Rudin Fellow 2014-15

By: Katie Grogan, DMH, Associate Director, Master Scholars Program in Humanistic Medicine, NYU School of Medicine

The Rudin Fellowship in Medical Ethics and Humanities supports medical trainees at NYU School of Medicine - including medical students, residents, and clinical fellows - pursuing year-long research projects in medical humanities and medical ethics under the mentorship of senior faculty. It was established in 2014 through a grant from the Louis and Rachel Rudin Foundation, Inc and is a core component of the Master Scholars Program in Humanistic Medicine.


Emily receiving her fellowship certificate from Drs. David Oshinsky, her Rudin Mentor, and Lynn Buckvar-Keltz, Associate Dean for Student Affairs, at the Rudin Fellowship Project Showcase, July 7, 2015

How did you become interested in medical photography and why did you decide to develop this into a research project as part of the Rudin Fellowship?

My interest in medical photography stems from a longstanding appreciation of portrait photography, since the two overlap so much. I first took a portrait photography class in college. In medicine, much of our education relies on illustrations from photographs. So when we aren't learning from the patients themselves in clinical rotations, we're learning from textbooks and the Internet where we see photos of patients with these diseases. I've always wondered what the experience was like for the patient who is photographed. What were they feeling? What did they think would become of that photograph? Did they know it would be in textbooks for thousands of people to see years later? I imagine that the experience would be perhaps embarrassing for some but fulfilling for others. I wanted to explore the different emotions and scenarios in which portrait photographs were taken in medicine.

One component of the project was a historical survey of medical photography. I imagine that most people, whether they are in healthcare or not, know very little about the origins of medical photography. When and how did it become integrated in medical practice?

Photography in some form has been around for centuries, starting with principles of the camera obscura. But the birth of photography is often credited to Louis Daguerre, who developed the daguerreotype process - the first photographic image with permanence - in the 1830s. After that it's thought that the first application of photography to medicine was in the 1840s, when a physician named Alfred Donne published a cytology atlas of 86 daguerreotypes of micrographic images in his book Cours de Microscopie with the help of a photographer named Leon Foucault. The earliest medical portrait is an 1847 photograph depicting a woman with a sizeable goiter, taken by two Scottish photographers, David Octavius Hill and Robert Adamson. There are many other examples of medical portraiture in the years thereafter, including the earliest known dermatologic daguerreotype of a burn victim's distorted face and neck published by a surgeon in Philadelphia's Medical Examiner. There was also a psychiatrist, Dr. Hugh Welch Diamond, who gathered a collection of psychiatric portraits of asylum patients, which he used for diagnostic purposes and case reports, but he also showed them to the patients after their treatment had finished to say, "See: this is the state you were in prior to coming to me." Finally, I'll just mention, the first medical photography department in the United States was at Bellevue, under the guidance of photographer Oscar G. Mason. He encouraged physicians to use photographs to describe landmark cases, surgical cases, and medical cases. He also helped physicians compile photographs for atlases of disease, and those can be viewed to this day.

Portrait and medical photography seem so distinct from one another. One emphasizes the wholeness and personhood of the subject, while the other captures a specific body part or condition of interest. It's interesting that early medical photography employed portraiture so heavily. Was the implementation of medical photography in the 19th century about documenting the patient experiences or advancing scientific knowledge?

I think it was a blend of the two. The purpose was definitely to advance scientific knowledge and to show these diseases, and to be able to send these photographs to other physicians around the country or world so that they could learn from unique cases. That couldn't really be done until the photographic technology allowed for prints to be lighter, smaller, and easier to transport. But when you look at early photographs of the late 19th century, you see very staged poses, with the use of props and backdrops, and they look like formal portrait photographs. So, there was a time when the two really overlapped, as medical photography was gaining its foothold and becoming more of a scientific endeavor and less about artful portraiture.

I know you combed through some really fascinating archives. What types of images did you find? What surprised you most about what you saw?

I scoured many places, especially the Internet, because there are so many archival photographs available, but there is nothing like holding an old tattered photograph or a reflective daguerreotype - they almost look like mirrors, and they are really special to see. I was able to travel to the Morbid Anatomy Museum in Brooklyn and also the Mutter Museum in Philadelphia. I spent the day sorting through original medical photographs from the late 19th and early 20th centuries, particularly photographs of Civil War veterans who had an array of amputations and maladies related to their time in the war. What's so striking is how formal some of the photographs are. A lot of the subjects are dressed very elegantly - with their top hats, bowties, and ruffled shirts - and they're posing formally, taking a sort of pride in their image and perhaps even their malady, though I can only speculate. I was also surprised, on the other side, to see portraits that seemed to portray patients' embarrassment or modesty about their illness, whether communicated by a look you can see in their eyes or their decision to cover their faces. Again, I can only speculate why they were covered - maybe it was the photographer's choice or the physician's or the patient's, it's hard to know for sure.

In our modern medical landscape, patient autonomy is paramount. When we talk about medical photography, what immediately comes to mind for me are issues of consent and privacy. Were these concerns for early medical photographers? How did this change over time?

In the present day, patient privacy, image security, and image quality are definitely paramount. I think early medical photographers were also concerned with image quality, but they employed the techniques of traditional portrait photography to showcase the high quality of their medical photographs, with the props, clothing, and elaborate backdrops. But underlying class issues and race issues came into play as well. There are photos that show patients of different races with similar conditionsaa leg amputation, for example - but the black patient is naked and the white upper-class patient is elegantly dressed and wearing full attire. In general, I think patient privacy was less of a concern. You can even find photographs with patients holding up signs with their names and other identifying information.

G. Porubsky

G. Porubsky, Co B. 46th NY volunteer, photograph by R.B. Bontecou, from Shooting Soldiers: Civil War Medical Photography, by Stanley Burns, MD, published by Burns Archive

Was there one landmark legal case that really altered the course of medical photography with regards to privacy?

It's hard to pinpoint one case that changed the medical photography landscape but one of the first landmark privacy cases that hinged on photography was Roberson v. Rochester Folding Box Company in 1902. Basically, in this case the Franklin Mills Flower Company had hired Rochester Folding Box to print 25,000 advertisement posters. On these posters was the face of a young girl named Abigail Roberson, a teenager whose portrait had been taken at a photography studio for personal use. She never consented to its public display. Unbeknownst to her, the photos were placed all around town, and she learned of them through friends and family who recognized her. She reported experiencing "great distress and suffering in both body and mind" and she had a nervous breakdown, essentially, because of the embarrassment. While the judge ruled in favor of Rochester Folding Box, her case led to really rampant discussion about privacy and whether or not you own your own image. Over time, a decision related to this case ruled that, in fact, you do own your own image and the rights to decide what can be done with it. There are so many other interesting cases. One is Claymann v. Bernstein in 1940, in which the court ruled that a physician could not use a photograph of a patient's facial development for the purpose of medical instruction without consent. So even if it was just to be shared between medical students and residents, if consent had not been acquired, then it was not allowed. In a 1961 case in Louisiana, McAndrews v. Roy, a patient sued for an invasion of privacy after a physician published an image ten years after the patient consented. The judge found it unreasonable to publish photos after so much time had elapsed. So the rules we know today stem from several legal cases over time.

The gold standard today is really written consent, right? In these cases, what was the method of consent?

For the case of the elapsed time, I think it was a written consent. But even today not all institutions do written consentathey'll do verbal and document in the chart, "consent gained verbally," and some people don't do consent at all. So, it's definitely a fine line still, despite all of these cases.

To be continued

Humane Endeavor

August 21, 2015 at 12:25 pm


From the Division of Medical Humanities Newsletter:

An interview with Atul Gawande touches on medical error and fallibility, healthcare reform, the joys of reading, and how his research on end-of-life care made him a better doctor.

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Rediscovering a history of trauma: An interview with Dr. Annita Sawyer

August 17, 2015 at 2:20 pm

Dr. Annita Sawyer is a psychologist and the author of several essays, stories, and a memoir titled Smoking Cigarettes, Eating Glass, which was published in May 2015.

In 1960, however, Dr. Sawyer was battling mental illness and thoughts of suicide. She was institutionalized and underwent 89 electroshock treatments. Although traumatized by her experience as a patient, Dr. Sawyer survived the broken mental health system of the 1950s and 1960s and went on to graduate summa cum laude from Yale, earn her doctorate and join the faculty of the Yale University School of Medicine. In 2001, Sawyer sent for the records from the years she was a patient at the two psychiatric hospitals. She decided to reveal her past and began to write only after she had begun to recover from revisiting the early trauma and began to remember what had happened to her.

In this interview with Simone Leung, Dr. Sawyer discusses the process of creating her memoir, how doctoring and writing play into her life, and shifting perceptions of mental illness today.

What originally led you to dig into your history, and why have you chosen to share your story in Smoking Cigarettes, Eating Glass at this point in time?

I'd been working full time for twenty years. As a psychotherapist I had reached a comfortable place professionally. My children were grown and on their own, so I had privacy. My husband and I were meeting with a marriage counselor who was struck by my sometimes vague, otherworldly demeanor, and the fact that in the middle of an argument I would often forget what I was talking about. She recognized this as dissociation, a symptom of trauma. I still had little memory of my first twenty years, and I had questions about my history, which I thought might have answers in the medical records. I wanted to find out the specific number of shock treatments I'd been given - my estimate of 54 seemed way too high. For all of these reasons, we agreed that I should send for the hospital records.

Conventional wisdom holds that the best way to make a point vivid and memorable is to connect it to a story about a real person. Reading the records triggered a dramatic revisiting of my early life - as a child and also as an adolescent in the hospital. All my old symptoms returned, overwhelming me. Memories I thought had been erased by shock treatment returned in many forms. Most striking were intense physical reactions that often lacked thoughts - memories were stored in my body even though they might have been erased in my mind. This experience of the enduring effects of trauma was so amazing to me that I was determined to share what I'd learned. I felt an urgent need to inform clinicians of the harm they could cause by being careless, by not paying attention, beginning with diagnosis.

A mental illness diagnosis has a powerful influence on one's sense of self. Also diagnosis often determines treatment and some treatments have severe life-changing side effects. Misdiagnosis can seriously compromise people's lives.

Beyond medical side effects, shame and stigma adds to the suffering already caused by mental illness. It can lead people to deny that they are having problems, or to avoid getting help, because treatment also carries stigma. This stigma also affects families and friends, who worry about shame by association. I kept my past hidden for most of my life, long after I was working as a psychologist. This secrecy was a given: no one ever suggested that I should stop hiding my past. However, the gratitude people show - friends and strangers alike - along with their references to my bravery now that I am speaking about my experience, makes clear how powerful the stigma is and how important it is that we work to diminish it.

And finally, I'm here, alive, today because I was fortunate to find the right therapist and to recover through psychotherapy. By showing how it worked for me, I want to inspire people both not to give up and to invest in good quality psychotherapy.

When you were sorting through your journal entries and gathering material for your memoir, did you find yourself having to filter out certain details? If so, could you talk about the process of determining what should be made public and what should be left personal?

Initially I was writing from the midst of urgent chaos, seeking to hold myself together by putting thoughts on a page. I repeated lots of fears; I can see looking back that I was in certain ways repeating my earlier hospital thinking. I had a sympathetic and savvy therapist who encouraged me to write down what was happening and to send it to her by email. The details I filtered out over time included primarily what I considered over the top melodrama. I also toned down what felt like was terrifically immature neediness in my relationship with my therapist. There was just so much embarrassing information I could bear to reveal.

In one of your essays, you explain that you initially held back from sharing your history in part due to fear that it would affect your professional reputation. Did opening up about your past and vulnerability affect your practice?

I am not alone in my concern that the stigma attached to acknowledging a history with mental illness could risk my professional reputation. A number of colleagues have confided their own fears. I kept my past hidden until I'd been in practice for more than twenty years.. The first time I spoke at a psychiatry grand rounds, I was a co-presenter and my name was not on the announcement. Before I did that I met with both a long time supervisor, a senior psychologist in New Haven, and with my former psychiatrist, checking with each one to make sure they didn't think I was compromising myself professionally to do this.

All of these precautions may or may not have made a difference. In fact, everywhere I've gone I've been treated with kindness and respect. I have been invited to make further presentations. People express gratitude and confide their own secrets. Among professionals my reception has been consistently positive. My patients appear unfazed. If anything, they say it makes them feel more secure to know how far I've come. They appreciate that I understand suffering.

Could you talk about the shame and fear of stigma attached to mental illness and psychotherapy today? Do you believe our perception of it is shifting and if so, how?

I hope that increased openness on the internet and the presence of more media series that include mental illness and psychotherapy will help to defuse the stigma. But every time there's a mass murder or similar tragedy and the perpetrator is someone identified with a psychiatric diagnosis much of the media hype that follows only serves to reinforce the fear, and thus stigma, again. I don't think there's a good way to change this except for successful, accomplished, public people to begin to refer to their therapy sessions or their childhood therapist or the year they had to drop out of college for treatment, etc. as if that was a perfectly reasonable response to the situation at the time, so that the public perception shifts to seeing mental illness and treatment, especially psychotherapy, as part of a continuum, as much more common that one would think and something that can be dealt with successfully.

Smoking Cigarettes, Eating Glass, "The Crazy One," "The Other Chair," and many of your other works seem to draw almost exclusively from your personal experiences. What is appealing about writing nonfiction to you?

Nonfiction is what I know. I haven't tried to write fiction because I worry I couldn’t create a good enough story. My own life in psychiatric hospitals, however, delivered hundreds of stories already made. I just had to learn how to capture them on the page. There's the challenge of telling a good story as a way to make a psychological point. By using myself I can show the many sides of a simple action - the shame, fear, excitement, dread and hope that can be part of making a decision or taking a stand. I can illustrate emotions and psychological dilemmas without wondering if I'm accurate or not. The truth has sort of been handed to me and I'm using it.

As a psychologist and an author, you straddle the worlds of medicine and humanities. Could you talk about the interplay between your professions?

At the center of both medicine and humanities is the individual human experience. Yet that experience takes place in a context. We're all products of families and cultures, which vary widely, to say nothing of the larger forces of economics and the natural environment.

For me personally, your question itself couldn't be more affirming. You accept as given that I am an author as well as a psychologist; you refer to my professions, plural. And today this is true: I belong to both worlds. Each enriches the other. I find joy in both. Often the mistakes I make in therapy, the times I'm insensitive or overlook something important, come from rushing, from filling in the blanks with my own assumptions rather than being patient and listening with respect. The more open we are to varieties of experience, the better we can listen and appreciate any particular individual we encounter.

Are you currently working on any new projects?

I have pages of ideas for new projects, but I haven't yet been able to develop one beyond a few tentative stories. I'm learning that to have a book accepted for publication and then actually published and available is only another step in a long, ongoing process. It sounds trite, perhaps, but it's like having a baby. Labor and delivery is just the beginning! I'll be going to a residency in the fall where I'll have three weeks to really focus on beginning something new. I want to write stories about psychotherapy from a variety of points of view - the patient and therapist perhaps, but also the patient's parent or partner or child; people in the therapist's life. I want to see if I can convey the effects of psychotherapy as they ripple beyond the consulting room, to show how it heals (or doesn't) and how one person's change affects a whole system. And I'm beginning to think I want to write a novel that would tell what I imagine to be my mother's story.

Simone Leung is an intern at the Bellevue Literary Review. She is a rising junior majoring in Global Studies at Colby College and is interested in creative writing.

Sawyer's story "The Crazy One" appeared in The Bellevue Literary Review:

Patient Autonomy & Shifting Medical Ethics

August 7, 2015 at 1:20 pm

04eea5d5-bf0f-47c3-a305-0bddbafc7227From the Division of Medical Humanities Newsletter:

In an interview with Point of Inquiry, Barron Lerner, MD, PhD, professor of medicine and population health at NYULMC, "paints a global picture of all of the ethical considerations that come into play when practicing medicine as he wrestles with what he believes it takes to be a good doctor."

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Close Observation: Nursing & Writing

August 4, 2015 at 12:14 pm

From the Division of Medical Humanities Newsletter:

What is it like to be both a nurse and a writer, and how does one inform the other? The Bellevue Literary Review, a journal of humanity and human experience published by NYU Langone Medical Center, recently held a fascinating roundtable discussion on these questions and more.

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Reflections of a Young Doctor

August 3, 2015 at 10:32 am

From the Division of Medical Humanities Newsletter:

Does asking medical residents to participate in reflective writing exercises help them to better connect with patients? New York magazine highlights a study, recently published in The Journal of Health Communication, that addresses this question. Excerpts from the program exercises are featured.

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Oliver Sacks - "My Periodic Table"

July 31, 2015 at 10:18 am

From the Division of Medical Humanities Newsletter:

A moving essay from the great Oliver Sacks serves as a primer for embracing life, and science, even as the end approaches: "And now, at this juncture, when death is no longer an abstract concept, but a presence — an all-too-close, not-to-be-denied presence — I am again surrounding myself, as I did when I was a boy, with metals and minerals, little emblems of eternity."

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Wherever You Go: Self-Representation and Williams Syndrome

July 14, 2015 at 5:04 pm

Jess Libow is currently a summer intern at the Bellevue Literary Review. She is a rising senior English major at Haverford College interested in disability studies.

Nader and Josh at the Wildhorse

All photos courtesy of camp staff

Looking out over the dance floor at Nashville's Wildhorse Saloon as other members of our group line danced with the crowd below, Mark told me "It's good for us to get out into the community so that people know we exist." As a counselor this past June at Lifting Lives Music Camp at Vanderbilt University, run by the Academy of Country Music, I lived in a dorm with Mark, who is 51, and seven other men with Williams Syndrome. After this experience, I couldn't agree with him more.

Lifting Lives is a weeklong musical experience for people ages 16 and older with Williams Syndrome. Over the course of the week, campers from all over the country come together to write a song with renowned Nashville songwriters and, after much rehearsal, record and perform their original work at the historic Grand Ole Opry.

Recording Studio

While performing a song written only a few days earlier at the Opry might be intimidating to most, many people with Williams Syndrome thrive in this sort of setting. Williams Syndrome (WS) is a congenital neurodevelopmental disorder caused by the deletion of 26 genes on chromosome 7. WS is an extremely rare condition: the NIH estimates it occurs in 1 in 7,500 to 10,000 live births. In addition to mild to moderate intellectual disability and a range of medical issues, including cardiac conditions, people with WS are likely to have a number of distinct social qualities. Studies have shown, for instance, that people with WS have a strong predilection for music. People with WS also tend to have remarkably little social inhibition; they are eager to meet and please others and are deeply attuned to the emotional states of those around them. Their profound desire to connect lends itself easily to musical performance - people with WS are natural storytellers.

As an English major interested in disability studies, I was drawn to Lifting Lives because I saw it as an opportunity to witness people with disabilities telling their stories through songwriting. This year, the campers wrote a song with Ross Copperman and Heather Morgan titled "Wherever You Go." It's an uplifting song about aspirations and supporting one another. The most notable part of the song is the bridge, which is both universal and incredibly specific to people with WS. "Thunder roars and the rain might fall," the song goes, "but together we're unstoppable." This brief moment in the song addresses two significant characteristics of WS. People with WS have extremely high levels of anxiety, particularly about events beyond their control. Thunderstorms are a common stressor for a number of the Lifting Lives campers, and were a constant topic of discussion throughout the week. Because of the extent to which the "roar" of thunder produces anxiety in people with WS, when the campers sing this line many of them are essentially referring to their highest possible level of emotional discomfort - it is both a metaphor and a reality. The second half of the line, "but together we're unstoppable," speaks directly to the value people with WS place on human connection. The lyrics suggest that through interdependence, the campers are able to to withstand anxieties and other obstacles. This celebration of community support not only resonates personally with the campers, but is applicable across differences and abilities.

lifting lives camp

Songwriting and singing provide a creative and exciting way for the campers to tell their stories. David, for example, told me that he'd "always wanted to write a book about Williams Syndrome," but after a songwriting workshop with songwriter Odie Blackmon, "might have to change it up. There should be a song about this!" Like David, however, many of the campers have a propensity for self-representation off-stage as well.

I was struck by the ease with which campers would share stories from their past and especially intrigued by how many of their stories had to do with Williams Syndrome directly. The ever-enthusiastic Gary told me over dinner that he once encountered two nurses in the ER who'd "never met anybody who had Williams Syndrome! And they said what in the world is that? And I said to look it up, 'cause it's a really cool thing to know about!" Trevor, who works with People First, a disability advocacy organization in his home state of Washington, added that "people judge us sometimes, but they just don't know. We're friendly."

Their stories weren't always so straightforward. Some of the campers readily used simile to represent their experiences. For instance, while waiting at the gate to board his flight home, Trevor told me how he felt about my accompanying him. "It's like Barack Obama," he explained, "he’s the most powerful man in the world, but the legislative branch still sometimes helps him. So you're helping me right now." For Trevor, having a counselor wait with him at the airport wasn't insulting; it was merely part of a system of interdependence not unlike one of checks and balances. Similarly, Mark, who loves doing impressions, drew on his love of old movies to teach me about his past. "I identified with Frankenstein’s monster when I was younger," he shared after an impromptu impression of the character, "the neighbors weren’t very nice to me because I had this disability. But I found a way and I made friends."

It's hard not to wonder what drives this impulse to self-narrate. When does the desire to share one's story stop being a symptom and start being political? Does this distinction even matter?

Self-representation is a crucial aspect of disability politics today. As self-advocates, people with disabilities around the world are making sure their voices are heard. As the critical field of disability studies indicates, self-representation is a crucial aspect of advocacy efforts. This kind of political action embraces something that comes naturally to so many people with Williams Syndrome: telling your story. And a lot of the people I met at camp know that this matters. Echoing Mark's sentiment at the Wildhorse, many of the campers want others to "know [they] exist." Like David, who wanted to write a book, or maybe a song, about WS. And Kurt, who has a radio show every week. Josh, who told me he plans to write a blog for the Williams Syndrome Association. And Trevor and Dara, who are both self-advocates in their hometowns.

In my experience, people with WS challenge how we think about narrative and storytelling. They force us to reconsider what motivates us to share, to speak up, and to put ourselves and our stories out there. Biology and politics both come into play. It can be tempting to write off someone's unsolicited story as a symptom of their disability. It can also be tempting to romanticize their efforts to speak up for themselves with an overzealous "good for you" and a pat on the back. But at the end of the day, there's something powerful about someone sharing their life experience and perspective. The people I met at camp, whose stories I've tried to recount here, want to put everything on the table. I think they might be onto something.

To learn more about Williams Syndrome, please visit
To learn more about Lifting Lives, please visit their website

Cortney Davis - When the Nurse Becomes a Patient: A Story in Words and Images (Part II)

June 9, 2015 at 2:00 pm

(Kent State University Press, 2015)

[Editor's Note: This is Part II of a dialogue between author and painter Cortney Davis and our Art Editor Laura Ferguson. Part I can be read here.]

Laura: I'd love to know more about your studio process. I see that some of the pieces are acrylic, some oil, and some include collage. Are they as unselfconscious as they seem? Did they come into being easily and quickly, without a lot of working over - or did you just make it seem that way? You let us feel your pain and your aloneness, you invite us to understand, and you allow us in to your experience. I suspect that may be in part because your paintings are not too perfect and polished.

Cortney: The paintings were painted very rapidly with no working over. I was discharged in mid-July, and the first painting was done at the end of July. Most of the paintings were done in August, six of them, one after the other, usually only a few hours per painting, or less. Three were done in September and two in October. I actually didn’t know what I was doing, technique wise. I painted in my basement in front of an open sliding door, with music playing (most often "The Tallis Scholars Sing Thomas Tallis" or "Agnus Dei, Music of Inner Harmony"). Painting also took my mind off my body (I was having a lot of medication side effects) and I really felt blessed to be alive, to be home, and to be standing by the open door with summer all around me, doing something that seemed totally free from "thought." When I finished the last painting, I looked at them and wondered exactly how they came about. It seemed there was no "planning" to them, just the painting.

As I recovered, however, by October I could sense the paintings becoming more "thought about" and less unselfconscious. I began to wonder if I was painting "correctly" and I found myself being more careful, more precise with the last two paintings. It was as if when I regained control of my body and my illness was less central, less in command of my day, I also moved, little by little, away from the totally un-thought-about and un-planned-expression that marked the paintings. (The paintings in the book, by the way, are not in the order I painted them - they have been arranged, in the book, in a chronological order to tell the story. I painted the images without rhyme or reason, just painting whatever seemed most urgent.)

The commentaries were added in November and December, at a time when words seemed to return to me, certainly the creative medium in which I was most comfortable and felt most proficient.

The Dark Night

Laura: You say that "painting seemed to be all about the body" but also that "painting took my mind off my body." Is that a contradiction? Did it feel like getting back to your body the way it felt before the illness?

Cortney: Painting felt physical, messy. It felt more like my body if my body only consisted of the senses.

When I painted the last one (which is the last in the book, "Angel Band") I noticed it was very neat - it felt less messy than the earlier ones - and I knew it was a sign that my head was taking over again. I haven't really done any more painting since then.

Laura: I wonder if being so vulnerable and out of control, and in a situation that forces us to live in our bodies in a very basic sense, opens us up, frees up that kind of expressiveness. The side of ourselves that needs to get things right becomes unimportant.

I'm thinking about the med students in my Art & Anatomy drawing class. I find myself trying to get them to loosen up, to enjoy being messy, to let go of trying to get it "right" - which is hard, because it's so important in every other aspect of med school. I think this is related to the issue of control that you bring up. You speculate that "maybe turning illness into something creative is a way of taking control," and I think that's true. It allows us to organize the experience, to present it as we see it. But paradoxically, it's a control that comes from letting go of control. As you say, it works best when it's messy and just comes out, without a lot of thought or oversight from one's internal editor.

This tells me that there's the potential for tremendous creativity in the world of medicine, from both patients and caregivers - and that art is a great way for each to communicate and open up the reality of their experience to the other.