NIH balked at a child’s portrait in a rare disease exhibit because it may ‘evoke negative emotions.’ I’m appalled

My friend and fellow rare-disease warrior, Patty Weltin, recently reached out to me on social media.

“I’m so upset,” she said in a private message. “Beyond the Diagnosis isn’t going to the NIH.”

“Beyond the Diagnosis” is an exhibit of portraits of people — mostly children — with rare diseases that have been created by a small army of volunteer artists. More than that, it’s a presentation of the colorful souls within those seemingly imperfect bodies and a bright, uplifting, safe way to display them.

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I was shocked that the show’s organizers were withdrawing it from a planned two-month stay at the National Institutes of Health. The NIH is renowned for its efforts in advancing medicine and improving the treatment of disease, including rare diseases. And it has hosted the exhibit before, as have the FDA, the Mayo Clinic, Harvard Medical School, and others.

What could have prompted this? 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.” I’ve seen the portrait the NIH wanted removed, and all I saw was a happy, vibrant young man.

My shock turned to anger. It was a visceral response, one I have, unfortunately, felt many times before.

When I was growing up in Utah, my sister was my best friend and greatest champion. As a youngster, I didn’t know she had special needs — she was just my sister. Once I realized that her life in school was made difficult by some of the other kids, I became her defender.

One day I arrived home from school as the phone rang. A mother was calling to tell my mom that I had been throwing rocks at other kids. As I pulled off my boots and threw my winter coat in the closet, I told my mom I had been throwing snowballs, though they did have rocks in them for greater impact and distance. But I was throwing them only at the kids calling my sister stupid, and a dummy.

My parents understood, though they also tried to teach me to be diplomatic.

My son, Glenn, began having seizures when he was 3. I was better prepared than most people I know to adapt to my family’s new normal. We searched for the cause of the seizures for years. In 2015, when Glenn was 12, he was finally diagnosed with the ultra-rare KBG syndrome. We formed a foundation to help the other 60 patients we knew were out there, and through that I met Patty. Two years later, Glenn’s portrait became a part of the “Beyond the Diagnosis” exhibit, representing the now more than 300 individuals in the world with KBG syndrome.

My experiences with rare disease have shown me that old prejudices, like “if it’s not perfect, it’s not worthy,” remain to this day. That’s wrong. I believe that a person’s value is not measured by how she or he looks, or even acts, but how he or she makes you feel.

When Patty told me about the NIH asking to remove one portrait from “Beyond the Diagnosis” because it might distress patients at the NIH Clinical Center or “evoke negative emotions” in them, I mentally picked up the rock and began packing snow around it.

I’ve lived in this so-called distressing world my entire life. I see a family of variety, where differences are as common as freckles and accepted by most — not just those who revel in rising to the occasion. I see immense love and a deep appreciation for the more fundamental things in life. I see people who decorate their child’s hospital room for Christmas, not just the front room at home. These people take their joy with them.

I know how, when someone with a complex medical condition meets someone else who has personal familiarity with it, they share a depth of understanding that many others can’t comprehend. It’s sharing stories about the best way to keep a catheter or port open and swapping ketogenic recipes at midnight, because who sleeps in the world of rare diseases? It’s standing in front of legislators asking them to help your drooling child and putting your “distressing” world on display so you can make it a better place. Hiding it helps no one, except those who would rather not look.

The organizers of “Beyond the Diagnosis” did the right thing by withdrawing the show from the NIH. Its request to remove one portrait is the same as asking to remove them all.

Annette Maughan is CEO of the KBG Foundation.