This Jewish Disability Activist Walked the Runway at New York Fashion Week

22-year-old Lily Brasch, who has a form of muscular dystrophy, exited the runway moments before Shabbat to honor her Modern Orthodox faith.

When Lily Brasch was a child, she spent “every moment” in school hiding her centronuclear myopathy, a form of muscular dystrophy. At the private school she attended in Skokie, Illinois, she estimates that she was the only student with a physical disability; this lack of awareness and stigmatization around disability, combined with her natural shyness, made it hard for her to open up. But now, the 22-year-old Jewish disability activist is done hiding.

This past Friday, Lily walked the runway at New York Fashion Week, becoming just the second person with muscular dystrophy to do so (after actress Jillian Mercado in 2020). Wearing a gorgeous golden garment for South Asian brand Randhawa, Lily was among the first models to open the 5pm hiTechMODA show — and she did so in triumphant fashion. Lily made her entrance on the runway in her wheelchair, a choice she says she made to push back against the stigma surrounding mobility aids. Then, she rose to walk the rest of the way to thunderous applause and tears from her sisters, who were in attendance. At the turn, Lily flexed her bicep. It was an incredible testament to both her own strength and the error of doctors who told her parents that she wouldn’t live past the age of 4 — and then told her at age 16 that she would never walk again.

Photo by Hilary Phelps

“I had a lot of fears about doing it, so I was kind of scared. Like, what would people think?” Lily said of the experience. “But at the end of the day, it was an incredible time. I hope that other people can see [my walk] and feel proud of their disability. That’s why I wanted to do it.”

Beyond the effort it took to walk the runway, there was another particular challenge Lily faced while participating in the show: staying true to her Modern Orthodox beliefs. Lily is shomer Shabbat, meaning that she observes the Sabbath prohibition of work from sundown on Friday night to sundown on Saturday night. When JeanAnne Roberts, a colleague of Lily’s, reached out to her about walking at Fashion Week for Randhawa, a brand owned by Roberts’ friend Amna Inam, a few months of back and forth ensued. First, Lily and her team tried to make arrangements for her to walk at an 11am show on Friday, instead of the 5pm show. Ultimately, however, Lily ended up agreeing to walk at the 5pm show at Gotham Hall — provided she could walk first. Then, she would immediately depart the show for a nearby hotel room (knowing there was no way to get to her Upper West Side apartment in time) where she could light the Shabbat candles before sundown.

In spite of a last minute and somewhat stressful hiccup wherein another brand ended up walking before Randhawa which meant Lily walked an hour later than expected, she and her sisters were still able to make it to the hotel in time for Shabbat. Ultimately, the experience was important to her as a Jewish person with a disability.

“It meant a lot to me to get out there and represent [my identity],” she said. “I say this all the time, but why are we not celebrating neuromuscular conditions? Why are we not celebrating disabilities? I know they have this negative connotation, and I wouldn’t wish disability or disease on anyone, but [disabled people] have enough people telling us what our fate is. We have enough people telling us what to look for, what to be scared of and what to expect. We also need those people telling us: you’re still worthy, you’re still great, you can still try. I was hoping, when I walked, to represent that hope a lot of people need and I needed.”

Lily Brasch
Photo by Hilary Phelps

Though her stint at Fashion Week is over, this is certainly not the last we’ll be hearing from Lily Brasch. While juggling her busy college schedule (she’s a first year student at Columbia University studying psychology and business management) and her workout schedule (she meets with a trainer three days a week to work on muscle building and swims laps five days a week), she still finds the time for disability advocacy. Through her Born to Prove Foundation, she has a documentary about her struggles coming out this year called “Die Strong.” She’s also hoping to climb Mt. Camelback in Arizona — a feat she accomplished last year on March 6, a day she marked as “Physical Independence Day,” with a team and supporters in tow. On this year’s trek, she wants to encourage other disabled people to join her. And finally, her goal is to help Jewish day schools become more inclusive and supportive of students with physical disabilities; Lily hopes that this specific action will encourage other Jewish institutions, and the Jewish community more generally, to become more accessible.

In total, the work Lily has done for the disability community is extraordinary. Regardless of whatever life throws her way next, I’m confident that Lily Brasch will handle it in the same way she walked down the runway last week: with style, immeasurable strength and pride in her disability and her Jewishness, guided by tikkun olam.

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