How Textbook Beauty is changing how we see patients

By James Barnett, AADMD Student Chapter Leader, Albert Einstein College of Medicine

Winnie loves to smile and make others laugh. She is nonverbal but brightens everyone’s day with her goofy, happy attitude and contagious giggle. She’s from West Michigan, so Winnie loves to go to the lake and play in the sand. She also enjoys seeing her friends at school and playing games with her siblings. She is a little ray of sunshine! 

Winnie is living with bilateral perisylvian polymicrogyria: Photo By Rick Guidotti for Delta Dental and Positive Exposure.

If you audited every photo used in medical school curricula around the United States, how often would you see patients with black bars over their eyes, emotionless, with an almost macabre presentation?

I know that my medical school uses photos that fit this description.

Pictured: Christopher is living with Cerebral Palsy and Epilepsy. Photo by Rick Guidotti for Positive Exposure.

I learned the history of some of those photos by speaking to Dr. Robert Marion, a prominent Professor of Genetics at the Albert Einstein College of Medicine. He is both a strong supporter of using more positive photos in medical education, and one of the many photographers that supplied the black barred photos you may have seen in your textbook or school’s PowerPoints presentations.

When we spoke, he explained how photos are necessary in teaching the morphology of certain diagnoses. However, during his training, photos were not nearly as accessible as they are today. Google, PowerPoint, the internet and even the personal computer did not exist yet. If he wanted to include a photo in a presentation, he would have to take the photos himself. Despite the importance of photos, he said “there was never any time for instruction on how to go about taking a good picture.” His equipment consisted of a Kodak Instamatic Camera attached to a 24-inch chain, which was used to measure how far the subject's face needed to be from the camera. He vividly remembered his mentor taking these photos. He would set the distance, “click the button a few times, and pray that he actually got the kid's face somewhere in the field.” 

Pictured: Billy who is living with Marfan Syndrome. Photo by Rick Guidotti for Positive Exposure.

Some of these photos were taken with consent, while others unfortunately were not. So they added a black bar to protect the subject’s identity. Although the intention was to protect the patients, they may have done more harm than good.  Many photos taken were frankly degrading and dehumanizing.

It is a tragedy that for many students these demeaning pictures, which can have a lasting impact, may be the first, and sometimes only, impression of these wonderful individuals. If the goal of a good medical education is to encourage patient-centered care, which emphasizes the well-being of the person, then photos that display patients more like specimens cannot be the standard. This realization was what inspired my team to create Textbook Beauty, a diverse photo source, which will give medical students, allied health care providers in training, practitioners and faculty access to positive, informative images presenting the humanity and dignity of individuals living with various conditions/diagnoses. 

If the goal of a good medical education is to encourage patient-centered care, which emphasizes the well-being of the person, then photos that display patients more like specimens cannot be the standard.

Pictured: Caleb who is living with Achondroplasia. Photo by Rick Guidotti for Positive Exposure.

I didn’t notice the obvious problem of representation of patients until I met Rick Guidotti, the founder of Positive Exposure. From the first minute, he made an impression of being one of the most passionate, enthusiastic, and magnetic personalities I’ve ever met. Hearing from people he photographed and speaking to him was eye opening. His work emphasized the beauty and humanity of people which is often overlooked or underemphasized by medicine. His work inspired me to work with professors at the Albert Einstein College of Medicine to incorporate his photos into my medical school curriculum. I am proud to say the Einstein Chapter of the American Academy of Developmental Medicine and Dentistry (AADMD) successfully did this with the help of Dr. Howard Steinman and Dr. Herb Lachman who run the genetics course at my school. 

Seeing these photos in my curriculum impacted me greatly. The photos illustrated the beauty and positive qualities of each person. They portrayed their individuality and personality, and I still can’t help but smile when looking at these wonderful individuals. Maybe the most important contrast to the older photos was their emphasis on the person first and the diagnosis just as a part of that person, not the other way around. The PowerPoints were no longer just displaying the palmar crease of Down syndrome or the morphology of Prader-Willi syndrome. They were showing Simone living with Down syndrome and Ronan living with Prader-Willi syndrome. It was a gentle but striking reminder that I came to medical school to treat people, not just disease.  

These pictures honestly changed my view of my duty as a healthcare professional and how we should perceive our patients.

Pictured: Simone who is living with Down Syndrome. Photo by Rick Guidotti for Positive Exposure.

These pictures honestly changed my view of my duty as a healthcare professional and how we should perceive our patients.  It pushed me to expand this initiative to others like myself, who I knew could benefit from a new point of view. I reached out to students from the AADMD across the US and we found others who wanted to see a change in their school! Myself and my board told Rick the good news, and with his leadership we started compiling photo galleries of individuals living with albinism, autism, familial dysautonomia, and more. This is when Textbook Beauty started. With each photo gallery we carefully selected photos that represented each person just as that, a person and not just their diagnosis.  

Pictured: Chris who is living with Arthrogryposis Multiplex Congenita. Photo by Rick Guidotti for Positive Exposure.

Rick pushed us farther and demanded more from this project to include diversity of age, gender, race, and spectrum of disease. This would not only be a powerful learning tool for medical students, as it is not uncommon to have only one photo of a person with a certain diagnosis, but was also a celebration of humanity and the diversity of beauty in our patients. We’re still compiling more photo galleries and planning ways to spread our project! There’s still so much work ahead of us, but we're confident in our mission!

We no longer live in a time in which photos are hard to take or hard to come by. Information is now easily disseminated. We can and should demand proper representation of individuals living with various diagnoses for our sake and the patients we take care of. I believe it’s time for schools around the country to make efforts to celebrate the beauty of our patients and this should start with better representation in our school’s curricula. My team is doing its best to push Textbook Beauty’s mission forward. I encourage anyone who is reading this to reach out to me and join the cause by incorporating photos into your curriculum. There’s more to come, but we must start somewhere!

On a final note, as I am only part of the larger Textbook Beauty team, I want to give credit and thanks to everyone who helped. I’d like to give a special thanks to Rick Guidotti, for his passion, expertise on advocacy, and of course for the photos that make this possible, Dr. Vincent Siasoco for his guidance and leadership, Samantha Disalvo and Anuva Goel, for their dedication and passion in planning and initiating this project, Drs Lachman and Steinman for helping us incorporate these photos into our school, the Rose F. Kennedy Center UCEDD and all the members of the Einstein chapter of the AADMD!  

For more information contact images@positiveexposure.org