The body is physical, but the soul is not. It is soul that defines our soft truth, but it is body that defines our everyday tangible hard reality. If you can’t walk, your daily reality — the actual physical living — is challenged, but if the soul is solid, it can and will motivate you to find and create beyond the challenge, beyond the diagnosis.
It is soul and spirit that motivated Patricia Weltin, founder and curator of “Beyond the Diagnosis,” to create an art exhibition program that spotlights the intangible — the soft truth, the essence, the angel light, the soul of children who, by no fault of their own — live with physical challenges and rare diseases that mark them in the harsh world. But beyond the physical, they are pure beauty.
The Rumford, Rhode Island-based “Beyond the Diagnosis” is a traveling art exhibition of mostly traditional portraits, in a variety of painting styles, from classic and tight realism to expressive and abstracted representations. There are over 100 portraits in the collection by artists from around the world, well-known artists as well as emerging, and it continues to expand as more artists and children participate in the program.
What’s important about the collection is the variety, not only in the depiction of children, but the mix of painting format, making “Beyond the Diagnosis” an excellent tool for portrait painting instruction. A viewer and student of art can and will benefit from looking at the collection as pure art without examining subject context. While context helps to understand the portraits, it is not necessary to know that the children have rare disease, because the art itself speaks about characteristics that are more important than illness.
The portrait genre is the most powerful form of art to capture, reveal and define a human person. A good portrait does more than depict physical characteristics; it reveals the inner person. The purpose of the portraits in “Beyond the Diagnosis” is to show children as they are, as soul beings, without a focus on physical limitations. The portraits also do something more: they prove that even though the subject is living with a disease, they can still have a full and active life, experiencing all the normal joys and travails of existence.
One of the best portraits in the collection, which can be viewed on its website (beyondthediagnosis.org) and in its catalogue, is Wolfgang Widmoser’s “Ashlyn,” a close-up, intimate portrait of a young child’s face in a superb realist tight style with a touch of expressive brush work. What is wonderful about Widmoser’s portrait of big blue-eyed Ashlyn, who lives with Sturge-Weber Syndrome, is that the disease is not on view. There’s a marvelous dramatic shadow on the left side of the face that runs from the eye down to the nose into the mouth that gives the face a captivating mystery.
This shadow is a discoloration from the illness, but without knowing the context, it existence as a gorgeous painted element, an exploration of light and shadow. What Widmoser has done with Ashlyn is reveal truth; depicting the child as a human of extraordinary mystery, curiosity and innocent allure. In the exhibition catalogue, Ashyln’s mother, Megan, said, “She is social and flirty….”
Another portrait that reveals inner truth is Jota Leal’s “Megan,” whose subject lives with Hutchinson-Gilford progeria syndrome, the famous aging disease, that gives people who have it a remarkable “elf-like” appearance. These are special people, touched by the universe to help those of us who physically age slowing to see and understand pure soul essence.Leal’s portrait is also tight and realist, a classic sitting portrait against a dark void background with beautiful light and shadow along the sitters left side. In this portrait, what is depicted is strength, fearlessness and action. Megan’s blue eyes reveal a powerful inner determination. Yes, her disease is on full view, because that’s who she is — small and unique. It can’t be avoided, and it’s beautiful. In the exhibition catalogue she says “Sure I’m small, but so are poison dart frogs!”
The exhibition also features untraditional portraits. Ian Mohan’s “Eliza,” of a woman who lives with Sanfillipo Syndrome, is a vibrant depiction of colorful and minimal modern line showing Eliza, in a sun hat and sunglasses, in abstracted form against a background of simple colorful graphic-line draw flowers. Her face is abstracted, giving the portrait the tonality of open-ended interpretation. Because she is deconstructed physically in her portrait, Eliza is about questions instead of direct answers. The portrait is also about joy and escape, removing the sitter away from the heaviness and realism of the world to play in a magical place of possibility instead of limitations. Of this, her parents, Glenn and Cara, wrote, that she enjoys, “make believe in her backyard tower.”
While it is absolutely impossible to select the best portrait as all are beautiful, there are works, from a formal art perspective that are better than others. It is the technical variety, the stylistic differences, from one portrait to the other, that makes the collection important and engaging as an exhibition of art.
Artists who wish to participate fill out a submission form, which includes a request for examples of their portrait art. “We now have artists from as far away as Thailand and Bali,” Weltin said. “We also have begun including children from around the globe. We never expected that a portrait exhibit that started in the smallest state in the country would become a worldwide movement.”
As the exhibition has traveled, Weltin has been able to meet many of the children and their families in person, who through their participation in the exhibit, has become a family in its own right. “I connected with most of the families and artists through social media,” she said. “The portraits and the images I work with every day are more than portraits to me. I have a connection to each child. In a certain way, they have become like my children, and when I see a portrait, I ask myself if I am doing everything I can to make sure these children are being seen for who they are and not the disease they live with.
“I have been to many events and watched people connect with these children. They are moved and engaged. They see the child and I am so grateful to the artists who are changing the way the world sees rare children.”
Beyond the Diagnosis will be unveiling a portrait of a little girl with Long QT Syndrome at the 12th International Sudden Arrhythmic Death Syndrome Foundation Conference that takes place October 4 through 6 in Atlanta, Georgia. The exhibition will be on view from October 26 and 27 at the New England Hemophilia Association Fall Fest in Warwick, Rhode Island as well as the Disorder: The Rare Disease Film Festival in San Francisco, California on November 9 and 10.
“Beyond the Diagnosis” was unveiled at Brown University’s Alpert Medical School in 2015 in honor of World Rare Disease Day. There are approximately 7,000 different types of rare diseases and disorders with more being discovered each day. Eighty percent of rare disease are genetic in origin, and thus are present throughout a person’s life even if symptoms do not immediately appear. Ten percent of the population in the United States are living with a rare disease, 50 percent are children. To learn more about the disease and the art, visit rarediseaseunited.org and beyondthediagnosis.org.