When disability activist Lily Brasch was asked if she would walk the runway as a model for New York Fashion Week, she didn’t know if she would be able to do it.
That’s not because she has a rare form of muscular dystrophy, which weakens muscles and limits her ability to walk. Rather, it was unfortunate timing: The show was set for Friday evening, when the weekly Jewish holiday of Shabbat begins.
But Brasch, who is Orthodox and goes by the stage name Lily B., quickly devised a workaround: She took her turn on the catwalk in Midtown at 5:00 p.m. and, instead of schlepping back uptown to her Morningside Heights apartment, quickly headed to a nearby hotel to welcome Shabbat with her sisters.
And so on Friday, Feb. 10, Brasch became the first model with muscular dystrophy to walk the runway unassisted at New York Fashion Week, and the second person with the condition ever to appear. (The first was actress and model Jillian Mercado in 2020, who used a wheelchair.)
“It felt really good — it felt freeing,” said Brasch, 22, who modeled a gold sari from the brand Randhawa, which specializes in modern South Asian style. “I definitely never thought I would do something like this.”
“I prioritize representing disability, and pride, and just bringing joy to that community, but I also prioritize remaining truthful to my faith,” Brasch said. “It was great teamwork to get me on the stage and represent disability, and then come right off to go celebrate Shabbat.”
When Brasch was 16, she was diagnosed with centronuclear myopathy, a rare form of non-progressive muscular dystrophy. She was told she would never be able to walk or lift heavy objects unassisted due to her disability. At the time she was disheartened — but she said she used the diagnosis as motivation to “prove barriers are meant to be broken.”
Walking in New York Fashion Week — which runs through Wednesday — is the latest in a series of triumphs for Brasch, who moved to New York last August to attend Columbia University. Last March, Brasch climbed Camelback Mountain in Scottsdale, Arizona — a feat which she calls “My Everest.” She’s also competed in body-building competitions and loves going to the gym.
She also founded the Born to Prove foundation, which promotes disability awareness and breaking barriers.
Though the Chicago native has not always been outward about her Judaism in her activism — in fact, at first she was advised by friends and family not to bring attention to it — Brasch has come to realize how much her religion guides her.
“My Jewish identity has inspired me in that we’re all put on this earth for a reason. Every single one of us has a purpose and that’s what my religion has helped me find,” she said. Her purpose, Brasch added, is to represent strength and beauty for people with disabilities in the next generation.
She hopes to be an inspiration within the Jewish community. “There is a lack of representation in the Jewish community, at least in my Orthodox community, of people with disabilities actually achieving things,” she said. “It’s not really talked about and it’s looked down upon.” Groups like RespectAbility and the Rudin Family Foundation have been working to change that.
She was worried about posting on social media from Fashion Week, knowing her observant friends might question the timing around Shabbat. But Brasch said she was pleasantly surprised when so many congratulated her on representing disability and Judaism and staying true to herself on the runway. “That was one of the best things for me to see because that was my initial goal: to show that there are people with disabilities in the Jewish community and things are changing,” she said.
Brasch is also partnering with Movinglife, an Israeli manufacturer of folding mobility scooters — a deal she inked just before she found out she would walk in Fashion Week. The company partnered with rabbis as well as researchers from the Zomet Institute in Israel to ensure that their scooters could be used on Shabbat even though they are electric, said Brasch, who currently uses the scooters to get around.
With her modeling debut behind her, Brasch said she would walk in Fashion Week again — but she’d rather see other models with disabilities on the runways. “I hope that next time it’s not me — it’s the next girl,” she said.
“The feeling of overcoming something and the feeling of being put out there and being cheered on is something everyone should feel,” Brasch added. “Often, with a disability, I hear ‘poor you.’ It can’t be like that anymore.”