At a fashion show for people with spinal muscular atrophy, models take back their own stories

NEW YORK — The scene: a fashion show on Fifth Avenue. The catwalk was not elevated, as it usually would be. People were packed tightly on benches alongside it in the dark. The first person to walk it was a singer/songwriter, James Ian, dressed in a flashy suit with a howling wolf embroidered in beadwork on the back.

Ian walked with a slight limp. Many of the other models, who included students, writers, an artist, and big-time social media influencers, used motorized wheelchairs. The event, covered in Vogue and Women’s Wear Daily, was part of an initiative to raise awareness about the lives and needs of people with spinal muscular atrophy (SMA), a condition in which damaged or destroyed motor neurons lead to various levels of disability. All the clothes were specially designed. Ian’s suit, according to an event brochure, featured a magnetic closure to create the look of buttons without imposing the challenge of fastening them.

“I feel like with media, oftentimes, non-disabled people are telling our stories, and they’re not telling it correctly,” Ian said during an on-stage Q&A that followed the fashion show. “There are a lot of incorrect perceptions or assumptions about the disabled community because non-disabled people are telling the stories.” The world, he said, needs more disabled actors, models, writers, CEOs, and CFOs.

“I love my SMA community,” Ian said. “I love the disabled community. I am proud to be a part of the disabled community. And when I walk down the street with my SMA limp, my SMA gait, my head is high and my disabled flag is waving.”

The event last week was part of an ongoing campaign funded by the drugmaker Genentech, known as SMA My Way. Last year, SMA My Way funded the creation of an inspirational song and music video, called “Spaces,” written and performed by Ian.

The fashion show, held in a store in midtown, is this year’s big SMA My Way event. Fashion, it turns out, is both a way of empowering people with SMA, who face severe limitations when it comes to clothing, and a way of dramatizing the challenges people living with the condition face.

Joe Lakhman, a student who walked the runway with his sister, who is Miss New Jersey, wore a red leather jacket. Normally, he told the audience, he doesn’t wear leather jackets because they are stiff and make it difficult for him to operate his wheelchair. The sleeves of the jacket were separated from the jacket and attached to a harness underneath. Several of the women’s dresses had their hems shortened so as not to interfere with their wheelchairs. Allegra Keys, a poet and student, had a stretch panel on the back of her red off-the-shoulder gown, because zippers are both difficult to use and uncomfortable to sit against in a wheelchair. One boy had openings in his jacket and shirt to accommodate a feeding tube into his stomach.

Perhaps the stars of the show were Shane and Hannah Burcaw, a married couple whose YouTube channel, Squirmy and Grubs, has 1 million subscribers who tune in for their banter and discussions about Shane’s life with SMA. Shane has also written three books about living with the condition: “Laughing at My Nightmare,” “Strangers Assume My Girlfriend Is My Nurse,” and “Not So Different.”

In a backstage interview, they said that they are motivated by the overwhelming response to their videos — and the negative responses from online trolls, too. “Even today they motivate us,” Shane said. “They are evidence that we need to keep doing the advocacy that we’re doing because there is very much ignorance out there.”

Fashion, it turns out, is another window into Shane’s life. Finding clothes is “impossible,” he said. “I’m small,” he added. “So I have to shop in the children’s section and I’m a 30-year-old man. I don’t want to wear T-shirts with a teddy bear on it.”

Hannah interjected: “You will find one cool T-shirt and turn it around in the back and it says, like, ‘Daddy’s little boy.’ Never mind!”

For the fashion show, called Double Take, Shane wore a purple suit jacket that had stretch panels at the elbows to facilitate bending and invisible zippers for separating the sleeves. His suit pants came in two layers: a stretchy pant shaped to his leg, and the more formal-looking purple pant that snapped over it.

The participants’ clothes were designed by a group called Open Style Labs, a nonprofit that aims to make fashion more accessible for people who are disabled. Its CEO, Grace Jun, founded it in 2014 when she was a designer at MIT. She is now an assistant professor of graphic design at the University of Georgia.

Jenna Deware, who designed Shane’s pants, said she became interested in the project after she developed multiple sclerosis. She found that after her disease flared it was much more difficult to dress herself. So she came up with creative solutions. One of the dresses in the show used stretch fabrics in carefully placed locations so the garment could simply be pulled on and off.

“I think there’s ways to elevate these fabrics and to add modularity to make it more accessible to everyone,” Deware said. “And it’s obviously not going to be perfect, but we can strive towards making it more accessible.”

All of this work, of course, occurred with Genentech’s financial backing. The company’s interest in SMA is not purely altruistic. It sells a daily oral medication, Evrysdi, that is used to treat SMA in infants and in some adults. Like other SMA treatments made by Biogen and Novartis, it is effective, expensive, and lucrative. In the first half of the year it generated $500 million in revenue.

There was nothing at the fashion show that related directly to Genentech’s business concerns. The event was unbranded, meaning that Genentech didn’t even know which drugs the participants were on, if any. Its benefits to Genentech were purely in bolstering the company’s reputation, particularly with the patient community.

The event was a reminder that, in some ways, the relationships between pharmaceutical companies and patients are catalyzed by the awful way that people with disabilities are treated by much of society.

“I think the people who are involved in the SMA My Way program, they genuinely care about the voices of the SMA community,” Shane Burcaw said. “They have compiled this team of, I don’t want to say ‘all-stars…’”

“Great people,” Hannah interjected.

“Yeah, great people, great voices,” Shane agreed.

The pair said that they don’t even think about the fact that Genentech is part of a giant pharmaceutical company.

Nor, it seemed, did the other participants. Sawson Zakaria, a model and actress with SMA, said in the on-stage Q&A that she saw the fashion show as a way of helping to create more roles for people who are disabled.

“The more people with disabilities have the opportunity to work and be a part of the conversation,” Zakaria said, “the more non-disabled people can see how inaccessible this world actually is.”