In a fashion show for people with SMA, the models take back their stories


NEW YORK – The scene: a fashion show on Fifth Avenue. The catwalk was not raised, as it would normally be. People were packed tightly into the pews around him in the dark. The first person to walk in it was a singer/songwriter, James Ian, wearing a sparkly costume with a howling wolf beaded on the back.

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

“I feel like with the media, oftentimes, people without disabilities are telling our stories and not telling them correctly,” Ian said during an onstage Q&A that followed the fashion show. “There are a lot of incorrect perceptions or assumptions about the disability community because non-disabled people are telling stories.” The world, he said, needs more actors, models, writers, CEOs and CFOs with disabilities.

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

The event last week was part of an ongoing campaign funded by 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.

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

YouTube celebrities Hannah and Shane Burcaw, who said he’s normally uncomfortable in formal wear, but not in a suit that was made specifically for the fashion show. Courtesy IMAXTree for Genentech

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 does not wear leather jackets because they are stiff and make it difficult for him to operate the wheelchair. The jacket sleeves were separated from the jacket and attached to a harness underneath. Some 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 in the back of her red dress because zippers are difficult to use and uncomfortable to sit in a wheelchair. One boy had openings in his jacket and shirt to insert 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 follow for jokes and discussions about Shane’s life with SMA. Shane has also written three books about living with the condition: Laughing in My Nightmare, Strangers Assume My Girlfriend is My Nurse and Not So Different.

In a behind-the-scenes interview, they said they’re motivated by the overwhelming response to their videos — and the negative responses from online trolls, too. “They still motivate us today,” Shane said. “They’re evidence that we have to keep doing the advocacy that we’re doing because there’s a lot of 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 them.”

Hannah chimed in: “You’ll find a cute t-shirt and flip it over and say, like, ‘Daddy’s little boy.’ Don’t be upset!”

For the fashion show, called Double Take, Shane wore a purple suit jacket that had stretch panels on the elbows to ease bending and invisible zippers to split the sleeves. His costume pants came in two layers: an elasticated pant that shaped his leg, and more formal-looking purple pants that snapped over him.

The participants’ clothes were created by a group called Open Style Labs, a non-profit organization that aims to make fashion more accessible to people with disabilities. 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 developing multiple sclerosis. She found that after her illness flared up, 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 places so the garment could simply be put on and taken off.

Kellie Cusack, who has SMA, was one of the models in the show. Courtesy IMAXTree for Genentech

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

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

There was nothing in the fashion show that directly related to Genentech’s business concerns. The event was unbranded, meaning Genentech didn’t even know what, if any, drugs the participants were taking. Its benefits to Genentech were simply in strengthening the company’s reputation, especially with the patient community.

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

“I think the people who are involved in the SMA My Way program, they really care about the voices of the SMA community,” Shane Burcaw said. “They’ve put this team together from, I don’t want to say ‘all stars…'”

“Great people,” Hannah interjected.

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

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

Apparently, neither did the other participants. Sawson Zakaria, a model and actress with SMA, said in an onstage Q&A that she saw the fashion show as a way to help create more roles for people with disabilities.

“The more people with disabilities have the opportunity to work and be part of the conversation,” Zakaria said, “the more people without disabilities can see how inaccessible this world really is.”





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