On the runway at NY Fashion Week, an established model with muscular dystrophy makes history.

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 Lily Brasch becomes the first person with a condition to walk at a performance before hurriedly checking into a hotel nearby to observe Sabbath New York Jewish Week. Lily Brasch, a disability activist, wasn’t sure if she would be able to participate when asked to walk the runway as a model for New York Fashion Week.

That’s not because she suffers from a rare type of muscular dystrophy that impairs her walking ability by weakening muscles. The show was scheduled for Friday night, the start of the weekly Jewish holiday of Shabbat, which was unfortunate timing.

But Orthodox Brasch, also known as Lily B., quickly came up with a solution: She took her turn on the catwalk in Midtown at 5 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.

Thus, on Friday, February 10, Brasch became only the second person ever to appear with the condition and the first model with muscular dystrophy to walk the runway without assistance during New York Fashion Week. (The first was wheelchair-bound actress and model Jillian Mercado in 2020.)

Brasch, 22, who modelled a gold sari from the company Randhawa, which specialised in contemporary South Asian fashion, said, “It felt really good — it felt freeing.” “I definitely never thought I would do something like this.”

“I prioritise representing disability, and pride, and just bringing joy to that community, but I also prioritise remaining truthful to my faith,” Brasch stated“. “It was great teamwork to get me on the stage and represent disability, and then come right off to go celebrate Shabbat.”

Brasch was diagnosed with centronuclear myopathy, a rare type of non-progressive muscular dystrophy, when she was 16 years old. She was informed that due to her condition, she would never be able to walk or move large goods without assistance. She admitted to being dejected at the time, but she later said that the diagnosis served as inspiration for her to “prove barriers are meant to be broken.”

Brasch, who arrived to New York in August to attend Columbia University, has achieved a number of successes, the most recent of which is walking in New York Fashion Week, which continues through Wednesday. Brasch conquered Camelback Mountain in Scottsdale, Arizona, in March of last year, an accomplishment she refers to as “My Everest.” She enjoys going to the gym and has competed in bodybuilding contests.

She also established the Born to Prove charity, which supports tearing down barriers and raising awareness of disabilities.

Brasch, a native of Chicago, has not always been open about her Judaism in her activism; in fact, at first, friends and family counselled her not to draw attention to it. However, over time, Brasch has grown to understand how much her religion influences 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 added.“  She serves as a symbol of beauty and resilience for the next generation of persons with impairments, according to Brasch.

She wants to serve as an example for the Jewish community. “There is a lack of representation of people with disabilities actually achieving things in the Jewish world, at least in my Orthodox community,” she said. “It’s not much discussed and it’s despised.” To change that, organisations like RespectAbility and the Rudin Family Foundation have been active.

Photo by Hilary Phelps

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