Editor’s note: Two days after this article appeared, NIH director Francis S. Collins apologized to Beyond the Diagnosis about the portrait request described here. Collins said the NIH will display a series of portraits for its “Rare Disease Day and a future showing at the Clinical Center.”
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.
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.
Re: “being in pain”, from Patricia’s email thread. Denying the reality of pain is an insult to the people affected. Does disease matter only if it’s attractive or can be made to appear so by editing? The potential viewers of the exhibit already know pain on many levels; how could that image make them any more uncomfortable than the idea of having a condition that’s not pretty enough to be acceptable?
Lillian XXXXXXX
Don’t people impacted by rare conditions have enough challenges to overcome?
Shame on you “Lillian” – you’ve been curating for decades – you can make the call all on your own.
In my opinion, you owe that kid an apology, a dose of dignity and a high-traffic hanging location.
Make it happen. @tanthonyhowell
As a mother of a child with a rare disease, albeit in another country, I am astounded that anybody would think this is okay. These children are invisible enough without Government agencies compounding these issues. It is even more unfathomable that part of the Health and Human Services Department would take this undiscerning step and believe it to be in the interest of others. My son has Barth Syndrome and there was a portrait in this collection from a member of our group. What on earth is this world coming to. If this is the kind of decision made to benefit others I would hate to think of other decisions coming out of this department.
I am a mother of a child with a rare disease. I have been to the NIH clinic. We participated in a clincal trial. We had a positive experience and felt very grateful and proud that we volunteered to participate. We did not go there for any type of healing feelings from portraits or art, but rather, people. And the people we met evoked feelings of love, inspiration, hope, and faith, and compassion. All of them. Even those that appeared to be in pain. I’m sorry, but I am very disappointed in NIH for not rectifying this. The curator doesn’t get it. If they can’t see beyond 1 potrait, they shouldn’t get Beyond The Diagnosis. Bravo, Patricia, Annette, and everyone taking the time to comment.
Although I can understand how this entire situation has left people feeling misunderstood, devalued, and as though the world truly has less compassion than it should. To be completely honest, the whole thing really just saddens me.
The whole thing.
Actually, I will clarify that a bit, I am saddened by how lack of empathy, bruised ego, and lack of compassion really just ended up putting an end to something that could have educated, informed, and helped so many. That’s a real shame.
Now, I know that this isn’t probably the popular vote, but did anyone consider that instead of “shoot first, aim later,” the better response to an email (not an actual face to face conversation) that seemed somewhat uninformed was compassion, education, or maybe a phone call? It’s not an easy task, as personal experience as taught me, but I have never found it to be the wrong choice either. More than once its been patience, empathy, and compassion that’s changed a number or patient or client into a real human being – and that changes everything. And, really, who better to show anyone how it’s done than people who know exactly how precious a commodity that is?
So, I’m not condoning any sort of poor behavior or saying it’s okay to ignore uncomfortable situations. But, I am saying that if compassion and understanding is what you want, that’s what you need to do. Sometimes people need to be shown how to change.
Call them back. Put the pictures up. Let us benefit from knowing every single face there and remove the harsh words and hurt feelings that got in the way of some really great things.
Just a thought.
We did have a phone call. The only solution the NIH had was to relegate the portrait to an area where other people in the rare disease space were. People who wouldn’t be ‘distressed’ by a child with a rare disease. People who would accept that child for who he is. People who would stand up and unite for the sake of this child and others like him.
Patricia,
I truly meant no disrespect by my comment. I have had some rather disappointing experiences with individuals who can’t or won’t believe the world isn’t a “one size fits all” kind of place. It’s an awful, heart-rending experience (to say the least).
I’m glad you had the opportunity to speak to someone on the phone, and I’m sorry the conversation went so poorly. (The article and comments below didn’t really provide that much information.) But, I hope the comments I did see from the NIH were heartfelt and they are willing to reconsider and speak to you and arrange to have the exhibit displayed. I really think it would be a wonderful experience for so many people who truly want to provide love and support for loved ones in their own families as well as those they can send their love to from afar.
I wish you all the best as you and each of us move forward with this beautiful and worthy cause.
This is from NIH: the curator (not a rare disease staff) said they needed to check with higher ups. They would like to check with others in the hospital. “She indicated that if a decision is made not to include the piece at the Clinical Center, NIH has another location that might be suitable for the portrait. This alternative location hosts the annual NIH’s Rare Disease Day celebration, which draw hundreds of visitors including researchers, advocates, and policy makers, and doesn’t require the same considerations the Clinical Center has to make for patients.”
Below is the entire response from NIH:
“The NIH Clinical Center has showcased art from this organization for years. The current submissions for their Beyond the Diagnosis exhibit were under review when the contract was pulled by the exhibitor.
The NIH Clinical Center is a research hospital which saw more than 92,000 outpatient visits and 4500 inpatient visits in 2017. We choose and place artwork in the hospital for its healing potential for all of our adult and pediatric patients. On that basis, our top priority is always our patients. Since art evokes emotion, we consider several factors when selecting art that will be displayed at the hospital, including color, light, content, among others. Given these considerations to our patients, 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 and that she would like to check with others in the hospital. She indicated that if a decision is made not to include the piece at the Clinical Center, NIH has another location that might be suitable for the portrait. This alternative location hosts the annual NIH’s Rare Disease Day celebration, which draw hundreds of visitors including researchers, advocates, and policy makers, and doesn’t require the same considerations the Clinical Center has to make for patients. We regret that the Clinical Center art curator’s decision to have the portrait further reviewed was interpreted in a way that it was not intended.
NIH is the world’s largest funder of rare disease research, and the NIH Clinical Center itself is a major contributor to rare disease research and breakthroughs, while providing high-quality, compassionate care to patients with common and rare diseases alike.”
You are only get part of the story and half-truths.
My email thread with the NIH’s art curator. This is their first and true response. Indefensible:
Lillian: thanks Patricia, I got it today. The only one I have concerns about is XXXX, he might be interpreted as being in pain by some viewers. Is there any way we could just substitute that piece? I’ll have to take it to my art committee for comments if it needs to be in the show. Also, you might know already there is also an event at Natcher building. They are possibly looking for art to display during the event. Would you like me to put you in touch with Lester Davis with CC Communications who reached out to me earlier this week?
Thanks!”
Me: I’m so glad you got it. XXXX has XXXX syndrome. He is representative of how many patients with rare diseases look. We will change it if you like, but feel it’s important to include all children with rare diseases, despite their differences.
Lillian: I can totally see your point, but our environment at NIH can be overwhelming and we don’t want to add to a patient’s distress.
Me: I’m not comfortable with your suggestion to leave XXXX out of the exhibit. In fact, as the mother of a child with a rare disease who has been bullied all of her life for the way she looks, I am disgusted that this has even come up.
We are withdrawing the exhibit from the NIH gallery.
Megan, do you consider an art committee higher ups? There is no defense here. None.
it looks like no one noticed how the NIH has changed over the past few years. That picture did not look like one of those Pharma Ads were are inundated with constantly. This is what happens when industry Insiders run our federal agencies.
Bravo BTD. A portrait that evoked emotion. Bravo. As a parent of a child with a rare disease (and in this exhibit) I too felt distress when I learned of her diagnosis. We didn’t have an option to make it go away. We embraced the diagnosis and all of the emotions that come with it. Thankful to our village for walking with us and not closing doors on us. How privileged the NIH is to make something “distressing” simply go away.
Beautifully written.
As a woman with several rare yet invisible disease’s I am appalled at the outright discrimination by the curator of this exhibit.
I maybe lucky that my genetic disorders are invisible , yet that often precludes me from getting appropriate care. Having several rare disease’s and attempting to navigate a uniformed health care system is difficult at best.
I cannot comprehend how a portrait of a child with a rare disorder could in anyway disturb a population when the goal is information and advocay and knowledge of what “we” are up against.