A few weeks ago, Lily Brasch became just the second person with muscular dystrophy (MD) to appear on the runway during New York Fashion Week, and the first to do so unassisted by a wheelchair or scooter. Brasch represented fashion brand Randhawa on February 10 as part of Fashion Week’s hiTech MODA show. She was the first model on the runway because she had to get back to her hotel before sunset to observe Shabbat.
“It was incredible, and it went by really fast. It’s an incredible experience you’ve only thought about while lying in your bed and you think, ‘Well, what would that feel like’, and then you’re experiencing it,” Brasch says. “Most important was the feedback that I received afterward that people were inspired. It was a reminder that I deserve to be here, and this is going to remind other children like me that they deserve to be here, too.”
Brasch grew up in Skokie in a large family with five siblings, two dogs, and, she says, lots of fun. She was raised Modern Orthodox Jewish and graduated high school from Ida Crown Jewish Academy.
While she exhibited symptoms of muscular dystrophy since birth, it wasn’t until age 16 when her symptoms were progressing that a diagnosis of a rare form of MD was confirmed.
“Most of my life, knowing I was weaker as a young girl, I didn’t want to show it. It was easy to hide at first but then people started asking me, ‘Why do you walk like that or why do you talk like that’?” she says. “That can hurt a young person’s self esteem a lot. When you’re at home you don’t get questioned but when you go out people ask what’s wrong with you. I had very close friends growing up who were not fazed by what I have, and they would help me.”
Brasch says that in 5th grade it was a popular thing at her school to sit on top of the monkey bars, but you had to climb up to get there. Her friends formed a human ladder so she could climb up and sit on the monkey bars with all of the other kids.
Despite those positive moments, she faced physical challenges all through high school, which she barely finished—often having to skip school on days where she felt too weak. But she persevered and is now a junior at Columbia University, committed to helping others who face challenges and erasing the stigma of having a disability. She’s already established a charitable foundation to support her passion.
“I was 18 when I said this is what I want to do and I was 21 when I finally had the courage to speak out and to encourage others to find the beauty in their struggles,” she says. “I graduated high school in 2018 and now I’m studying psychology and business at Columbia so that will help a lot with the foundation that I’ve set up.
“My vision is to take this platform where individuals can really come to for hope and inspiration and participate in global events that I hope to set up. We started one last year around this time. It was the first mountain climb. We had people from all over join me and help just one girl with muscular dystrophy get up a mountain.”
At the finish of that climb of Camelback Mountain last March 6, Brasch planted a sign declaring March 6 as Physical Independence Day. The second Physical Independence Day will be celebrated this year. Her next goal is to get 10 people with physical challenges up the mountain with her.
She plans to have ongoing events that remind people to have hope and inspire people with disabilities to encourage each other up the mountains they face. One thing she’s quick to point out is that there is a difference between having a disability and being disabled.
“If you check my website, you can give a vote to support our mission which is in a way getting rid of the stigma of the word ‘disabled’,” Brasch says. ”I never have liked being called disabled, I don’t like the word and I think it’s a dangerous term to be throwing around to children when that word clearly translates to un-abled, which is furthest from the truth.”
She says her accomplishments, climbing a mountain and walking at fashion week being just two, is a credit to the fact parents never “put her in this box.” You can say she has a disability, but she wants to get rid of the negative stigma surrounding people with physical challenges.
“Disabled means that they are not able, that they are not beautiful, that they are not strong, that they are disabled as an entire person,” she says. “I feel very strongly about the impact of that word.”
Faith is an important inspiration for Brasch and the work she is doing now and plans to do in the future. Walking the runway was a goal but getting back to her hotel in time to observe Shabbat had to be part of the plan for that day.
“Faith is just what keeps me grounded and humble. I believe in God and that’s what keeps me going,” she says. “I’m around here for a reason and a purpose. Sometimes you’re chosen to take on jobs that you think you may not be strong enough to do but it reminds me to stay strong and continue on and stay positive. My faith is what I go back to every time when I feel I want to give up.”
For more information and to find out how you can get involved in Brasch’s work, visit borntoprove.com