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Edward Hessler
"Beyond the Diagnosis" is an exhibit of paintings of people with orphan and medically neglected diseases. This exhibit was withdrawn recently from a two-month showing at the National Institutes of Health (NIH).
The reason surprised me. Annette Maughan at STAT writes that according to the NIH Clinical Center, 'the hospital art curator expressed to the exhibit organizer that one of the portraits in the collection of rare disease portraits may evoke negative emotions in patients.'" Rather than remove the "offending" portrait, the organizers decided to withdraw the entire show.
The purpose of Beyond the Diagnosis is "advancing medicine through art." Here is the mission statement.
"There are 7,000 rare diseases. Rare diseases became known as orphan diseases because drug companies were not interested in adopting them to develop treatments. Less than 5% of all orphan diseases have a treatment. There are no cures. People living with orphan diseases experience long diagnosis times, few medical experts, no treatments, financial hardship, and emotional stress.
"The Beyond the Diagnosis art exhibit’s focus is the orphan disease patient. Artists have donated their time and talents to paint orphan disease patients for this groundbreaking exhibit. Each portrait represents a single orphan disease. Our goal is to put a face to all 7,000 orphan diseases. This beautiful exhibit is traveling to medical schools, research institutes and hospitals around the globe encouraging the medical community to look “beyond the diagnosis” to the patient.
"Art has been used for thousands of years to successfully convey a message, whether it be a story or a glimpse into the human spirit. At Beyond the Diagnosis, we believe art not only leaves a powerful and lasting visual imprint but creates a unique connection for the viewer."
The web page includes many paintings, information, a gallery of the artists who have donated their time and art, and itineraries of past exhibits. Interestingly, one of the testimonials is from NIH. " The Clinical Center hosted the exhibit in 2016, 2017 and looks forward to exhibiting 'Beyond the Diagnosis' again in the future."
I read Maughan's essay shortly before I discovered a short, powerful video from the BBC. It features the work of Angela Forker who photographs babies with severe and terminal illnesses. She places them in richly imagined and beautifully photographed fantasy scenes. The effect is moving. The short video is titled "Why I Take Photos of Babies with Severe Illnesses."
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