Bellisario College student combats stigma through openness, persistence

UNIVERSITY PARK, Pa. — Carlee Weber opened to Page 35 of Valley, Penn State’s student-run fashion magazine, and saw her photo. It made her think of her younger self.

“If little me would have seen this, it would have changed her world,” she said. “Growing up I never saw anyone in a wheelchair modeling or anything like that. It was really amazing to see.”

Weber is a junior public relations major in the Donald P. Bellisario College of Communications. She has a type of muscular dystrophy called spinal muscular atrophy, which consists of severe weakness of the muscles. Weber uses a wheelchair to get around and has a fully trained service dog, a chocolate lab named Magenta, for assistance.

The spread in Valley was one of many times Weber shared her story. In the article, she discusses how people talk to her differently on Zoom versus in person. She also talks about how challenging it can be getting to class. She is honest and open, a natural communicator. It’s a role she has been playing for most of her life.

Becoming a voice for a community

For as long as Weber can remember, she has been a “poster child” for her condition. Starting at 3 years old, she and her parents traveled Pennsylvania raising awareness and funds. By 10 years old, the Williamsport, Pennsylvania, native was holding court on stage sharing the difficult truth of her condition and explaining the challenges of her day-to-day life.

From the experience to the science, Weber knows everything about spinal muscular atrophy.

She is completely open about her condition, too. She wants people to ask questions, learn and chip away at the stigma that she is different. It is an attitude her parents instilled in her from day one.

“My parents were not going to have a pity party. They wanted me to be as independent as possible, which has definitely helped me get to where I am today,” she said. “They said that this is my life and it’s going to be great.”

Weber’s parents always pushed her to try new things, like traveling. They also encouraged her to apply to Penn State. She credits her parents for her fearless approach.

But there is another thing motivating Weber: “Spite.”

“For me and my community, I’d say it’s the biggest driving factor,” she said. “I just want to do things that people say I can’t.”

She added, “It’s not like you’re telling a kid they can’t have a certain toy. You’re saying I can’t because no one has ever done this before … so I am going to show you that it’s possible.”

That is why Weber is committed to having a college experience just like her fellow classmates. She lives on campus and is involved with THON, Penn State Access Club, and her sorority, Delta Phi Epsilon.

A natural talent

Whitney Chirdon, an instructor in the Bellisario College, taught Weber’s basic news writing course. She witnessed this barrier-breaking energy in Weber’s assignments and projects.

“Carlee has the natural talent and curiosity that will take her anywhere,” said Chirdon, who is also the director of communications for Penn State’s School of Public Policy. “She approaches everything with empathy and understanding. I can really see her tackle any issue.”

Chirdon said Weber was already a solid writer at the start of the semester. She arrived with a work ethic, “always the first one to class,” and boldness, “approachable, respectful and willing to talk to anyone about anything,” that will be the foundation of her future success.

“I could see it in the stories that she selected,” Chirdon said. “It makes me really happy to know she is writing and communicating about issues she wants to shed light on, because we need more people like that.”

Weber said the Bellisario College has put her in a better position to speak about these issues. While certainly not perfect, she has enjoyed the willingness of faculty, staff and students to listen and understand.

 “It’s an environment where people want to learn and they want to enrich their lives by seeing other perspectives,” she said. “It can be really hard to do that out in the real world.”

Another dream

Last fall, Weber penned a list of “9 tips for vacationing with a wheelchair” for Jansport. During her time with the student-run publication Her Campus, Weber wrote columns about a range of topics, from the COVID-19 vaccine rollout to a spotlight of powerful women. Recently, she has been regularly sharing her stories and thoughts on her TikTok channel.

With plans to graduate next fall semester, Weber said her public relations degree will help hone her communications skills. She hopes to use those skills to fight the stigma facing the disabled community, but she has another dream, too.

The dream started on July 7, 2018 — Weber’s “best day of my life.” It was the night she saw Taylor Swift perform. The experience was a game-changer, and she knew she wanted to be a part of it.

“I love live music and entertainment, and I want to do PR for that because seeing that stadium concert — which was at Ohio State, unfortunately — was life-changing,” she said. “I want to plan events and shows and coordinate press tours and travel the world, that would be pretty awesome.”

In November, Weber joined the student-run campus music festival Movin’ On as a promoter. Could it be a first step toward a career in the music industry? Probably, because evidence shows that it’s unwise to doubt Carlee Weber, a young woman who is not afraid to advocate for herself. She is someone who knows that tenacity pays off in the end.

“You have to keep chipping away every single day,” she said. “Nothing is going to happen overnight. Some days it gets exhausting, but if you want big things to happen, it takes time and persistence."