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This article is one of the winning submissions from the New York Post Scholars Contest, presented by Command Education.
Hefty camera equipment and tripods capture every angle of Great Neck South High School’s library. Shamrock green ribbons embroider the room—pinned to the chests of students, scattered across tables, and trailed on the zipper of every backpack. The students and administrators—including Great Neck’s superintendent, Dr. Kenneth Bossert, and South High’s principal, Adam Hopkins—anticipate the arrival of the keynote speaker Leah Zelaya. Despite the formal atmosphere and preponderance of recording equipment, Zelaya enters the room with graceful ease and a beaming smile. She looks like any other high schooler, except for the fact that rigid braces are fixed to her legs, from her hips down to her ankles. Despite the curious stares, she confidently makes her way down the aisle.
Zelaya is a high school senior who excels at skiing, dancing and modeling. She also lives with an ultra-rare form of muscular dystrophy, Scapuloperoneal spinal muscular atrophy (SPSMA)—a condition that has shaped her experience but does not define her as a person.
Muscular Dystrophy refers to a group of genetic conditions that affect roughly 16-25 per 100,000 Americans. Zelaya’s form of the condition is so rare that a little over 30 people have been diagnosed with it world-wide. SPSMA is a chronic progressive disease that causes the muscles—predominantly those of the lower limbs—to atrophy, limiting mobility and making it difficult for the affected person to walk without support. Most of the time, SPSMA is diagnosed during childhood; Zelaya was diagnosed at age 6.
While many children depend on wheelchairs, Leah opts to use braces, or Knee-Ankle-Foot Orthosis (KAFOs), since her diagnosis. She explains, “I think of it as I have four legs, which is really cool, and I get to customize the other two.” KAFOs offer users more mobility and a greater degree of independence than wheelchairs, but not everyone is fortunate enough to use them. KAFOs can assist people affected by many types of mobility issues, but they have a few drawbacks. First, the devices are quite heavy, weighing about five pounds each. Adapting to their weight takes difficult training and practice. Moreover, the orthosis must be customized, and finding the right fit—especially for a growing child—is a challenge. Also, this type of orthosis can be very costly. Zelaya recently acquired new braces, which cost approximately $15,000 to $20,000 for each one. Her insurance covered only 80% of the cost, despite Zelaya’s eloquent pleas to the company, in which she explained in detail why the new equipment was necessary. Her experience with obstacles like these has deepened her understanding of the necessity of life-changing equipment, and developed her sense of empathy with those who face similar challenges: “It’s their exoskeleton, it’s a part of their body, and without that, they feel like nothing.” Zelaya’s advocacy arises from her sense of sharing in the struggle of all those who live with disabilities. She has made it her mission to raise awareness about the realities of living with a disability, fighting for increased accessibility and financial support, so that all with disabilities can feel seen, included, and empowered.
Part of Zelaya’s advocacy for the disabled includes celebrating her ability, refusing to see her condition as a limitation. Leading by example, Zelaya fearlessly participates in activities the average person might find daunting; she skis at Windham Mountain, soaring down the slopes on a bi ski. Engaging her core for balance, she flies down the mountain at 150 mph. “It’s such a fulfilling experience where I feel free,” Zelaya comments on her experiences at the sport.
Zelaya is also an enthusiastic dancer. She has been a member of the organization “Dancing Dreams” since the year of her diagnosis at the age of six. This non-profit organization gives children who are facing medical challenges the opportunity to express themselves through dance. Celebrating movement with the group, Zelaya “felt like [she] fit in for the first time in my life.” Now in her senior and last year with the program, Zelaya formed lifelong bonds with the other disabled teenagers, creating a community where “we’ve just all spoken like regular teenagers living our lives, but encouraging others.” In addition to building a local community through dance practices, Dancing Dreams encourages its members to perform. Their audiences range from local venues to televised events on the national stage. Their dancers have been featured on programs, including but not limited to Good Morning America and the The Meredith Vieira Show.
Zelaya began her formal advocacy at the age of 15, as the national youth ambassador for the Muscular Dystrophy Association. However, her growth as an advocate required a difficult journey of self-exploration. When she first began, she struggled with understanding her place in the movement; she wanted to make a difference on a large scale, but she did not know how to get there. Then, entering her second year of outreach, she had an epiphany. “I knew that I really needed to reach out to my community, but mainly reach out to the younger generation,” she says. “I wanted them to know that you’re born with this condition, but that doesn’t mean that you have to feel a certain way about yourself because you can do so many things.”
As a child, Zelaya had often felt “alien” and called out by other children and parents for her disability. Now, her community outreach includes speaking to 5th and 6th grade classes, facilitating a spirit of inclusivity by educating typically abled children and inspiring those who have experienced struggles similar to her own. Her presentations aim to address and eliminate the barriers that arise from the perception of “otherness.” She helps students to instead focus on the things that brought them together, encouraging children to share their views and celebrate their individuality. Ultimately, she created a space where “every kid [could] feel like a kid.”
Over time, Zelaya has taken on the challenge of advocating on a larger scale, reaching people across the nation. Often visiting Capitol Hill with her family, Zelaya targets issues such as newborn screening, physical therapy and better access to healthcare. Zelaya’s father also battles SPSMA. “When they [Congress] see an entire family going to Capitol Hill and raising awareness, it’s very impactful,” Zelaya says. In particular, she fights for better processes when it comes to air travel for disabled people. Reaching out to others living with disabilities, she collects letters and visits the offices of airlines, making them read the letter on the spot. It was through efforts, like Zelaya’s, in which Delta first implemented a new system where people could board airplanes with their wheelchairs and be strapped in for the entire duration of the flight.
Zelaya is an inspiration within and beyond her own community. Pre-COVID, however, Zelaya was thrilled to be lauded not only as a community role model and spokesperson on the beltway, but also as a model on NYC’s Fashion Week runway. After walking for Tommy Hilfiger, she recounts, “I saw my photo on Getty Images and I was like, ‘are you kidding me?’ I loved it because I was able to represent so many people living with disabilities and that has always been my goal.” Zelaya was also featured in the movie Marry Me starring Jennifer Lopez.
Zelaya is many things—a student, an advocate, a dancer and a budding beauty icon—but mostly, she is herself. She navigates a world of labels by owning her identity and allowing herself to change and grow.
When asked how she views disabilities, Zelaya explains “being disabled is an aspect of the human experience that requires respect and understanding. It highlights the importance of inclusivity and the removal of obstacles, allowing every individual to realize their potential and contribute meaningfully to society.”
Olivia Gu is an 11th-grader at Great Neck South High School in Great Neck, NY, Gu hopes to run a media company one day.
English (US)