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Beyond the Diagnosis empowers the invisible

Malcolm Streitfeld

Anchor Staff Writer

Very recently, I’ve had the pleasure of attending “Beyond the Diagnosis,” an art exhibition, night lecture, reception and guided tour. It was put together with the help of the Paul V. Sherlock Center on Disabilities, Feinstein School of Education and Human Development, Dean’s Office, College Lectures Committee and the Departments of Special Education and Elementary Education. It featured Dr. Cara McDermott-Fasy and Dr. Paul LaCava, Beyond the Diagnosis CEO Patricia Weiten and artist Jennifer Cahoon-Gilhooly. Now that I have attended the main reception and visited the gallery, let me go into detail about my thoughts on the event.

During the reception, the Carter Family arrived with their daughter Bianca Carter. Bianca has Hereditary Sensory and Autonomic Neuropathy type IV. Because of this rare genetic disorder, she cannot feel pain, sweat, or distinguish hot from cold. Bianca’s mother spoke of her struggles raising her daughter at the reception but also made it clear how happy she was to be working with Beyond the Diagnosis. She spoke straight from the heart which made her words very powerful. Dr. LaCava, Dr. McDermott Fasy, Patricia Weiten and Jennifer Cahoon Gilhooly came across as inspiring also. A beautiful painting of Bianca was unveiled at the reception, made by Beyond the Diagnosis. 

Photo taken by Malcolm Streitfeld

After the reception I attended the gallery exhibition. The gallery features several paintings of children that have rare disorders and guests are provided with brochures so they can read the stories of these boys and girls and learn about their specific afflictions. As a person with autism these paintings really resonated with me. Autism isn’t a rare disorder, and yet still these kids, much like myself, are special and unique and have found their own ways to live happily. Beyond the Diagnosis finally gives them a voice, a method for their existence to be acknowledged by those who might otherwise ignore them.  These paintings have brought them recognition at long last. As Dr. LaCava explained during his introduction, “Beyond the Diagnosis unites art and science to raise awareness, educate, and inspire research and innovation of treatments for children with rare and neglected diseases.”

The paintings are gorgeous and vivid, displaying these children in their full exuberance with their wonderful personalities shining through. The backdrops behind these boys and girls are vivid, colorful and poignant. Beyond the Diagnosis has brought together artists from several different countries, including Chile, Poland, Indonesia, India and Pakistan. It was truly heartwarming to see that these children, despite their struggles, are now prospering and thriving with families that truly love and care for them. They have a right to exist just as much as anyone else does. And their stories need to be told. 

The Beyond the Diagnosis Art Exhibition offers self-guided tours until May 10. It is at RIC in Horace Mann Hall, 1st Floor, Elementary Education and Special Education suite from 9:00 a.m. to 5:00 p.m. I encourage everyone to go visit. It is truly a breathtaking and life changing experience. I learned so much from just being there today, about disorders I knew next to nothing about. I got to read the stories of truly wonderful youth who inspire me with how they’ve managed to remain optimistic despite the challenges posed to them by their disorders. Remember everyone, your voice matters, no matter who you are.


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