Fashion stylist Marcus John was preparing a friend for a gala in New York City eight years ago when he noticed she was shying away from trying on shoulder-less dresses and ones with plunging backs.
John’s friend, who worked in commercial modeling, didn’t want to wear any of the styles showcasing her back.
It was that night when John learned she had severe scoliosis.
“She had been hiding it all her life,” John said. “Some of her family members didn’t even know about it.”
Inspired by his friend’s experiences with scoliosis, John launched the nonprofit Back to Healing in 2017, which is meant to help those with the spine disorder through mental health awareness, empowerment, education and advocacy. The nonprofit conducts mission trips to Africa, South America and the Caribbean, where awareness and care for the impairment are rare. The group also organizes special photo exhibitions in U.S. cities such as Washington, D.C., and Los Angeles, and overseas, too, in locations such as Ghana and Jamaica.
Now a Back to Healing exhibition has come to Providence.
On the ground floor of Brown University’s Warren Alpert Medical School, visitors will find “A Curved Reality,” a showcase of seven local scoliosis patients captured in black and white photography, artwork intended to capture the multiple sides of people who have the spinal disorder.
The exhibit will be open Monday to Friday from 8:30 a.m. to 5 p.m. through the end of October at the medical school on Richmond Street in Providence.
Each patient has two large photos in the exhibit: one a traditional studio portrait and the other with their back turned and their curved spine uncovered.
Along with the photos, the exhibit also includes each patient’s story and how scoliosis has affected their life.
Dr. Bassel Diebo, assistant professor of orthopedics at Brown and a spine and scoliosis surgeon with Lifespan Corp.’s Lifespan Orthopedics Institute, brought the exhibit to Providence.
Diebo, who knew John, had seen similar Back to Healing exhibits and was inspired to bring a local version to Brown.
“We were on the same page in the way we want to address scoliosis,” Diebo said. “So it was an easy decision. We were all just singing the same song.”
There is limited awareness of scoliosis, yet there is a lot of stigma surrounding it and this often causes patients to face mental health issues such as depression and low self-esteem, Diebo says.
Scoliosis is an exaggerated, sideways curvature of the spine that often develops and is diagnosed in childhood. In most cases, the cause is unknown.
The disorder can cause physical pain and inability to stand straight. In some cases, the curved spine sends pain shooting down a patient’s legs.
“It’s extremely disabling. They cannot walk long distances; they cannot stand up straight – it’s very, very painful,” Diebo said. “The goal here was to normalize everything and to tell people that, ‘Hey, the way they look doesn’t define the way you are.’ ”
The exhibit includes patients ages 11 to 75, some of whom have had surgery to treat the scoliosis and have scars to prove it, Diebo says. Four of the models featured in the exhibit are his patients.
Medical students studying orthopedics and neurosurgery learn about spine disorders, but the hope is that “A Curved Reality” will raise awareness outside the classroom about the lasting effects of scoliosis – and treatments – can have on a person’s mental health, and the influence doctors can have on that.
“It’s a great career snapshot,” Diebo said. “It’s a huge window to the future for them; it has a significant educational value.”
Both Diebo and Kris Cambra, assistant dean of biomedical communications and curator for gallery space at Brown’s medical school, say students have been eager to help with the exhibit.
“One of the reasons that we do these exhibits is certainly to expose our medical students to different facets of ways of thinking about disease and about really looking at the whole person,” Cambra said, noting students were coming to look at the exhibit before all the portraits were hung.
This is why it’s important the exhibit also features the patients’ faces and stories as opposed to just their backs – because it offers context of who each person is and where they are in their life, Cambra says.
“We use art as a way to remind physicians that patients are not just their conditions. They are whole people who have families and interests and things that they love to do, and that disease or that disorder, or whatever it is, [is] just one small part of them,” Cambra said.
At first, John says scientists were confused by the exhibit’s connections between fashion, art and medicine. But Back to Healing’s exhibits have been well received and earned support not only from medical institutions but from leaders in the fashion industry, too.
He says the patients featured in the exhibit, also known as ScoliWarriors, have felt more seen.
“We see the beauty in things a majority of the world would look past,” John said.
