Mar 11, 2024

Influencing Positivity for the Disabled Community

Beacon Stories

Content creator and social media influencer Stephanie Renberg uses her platforms to raise awareness for blindness and disabilities in hopes that her openness about her Stargardt disease will contribute to a more inclusive and understanding world.

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Stephanie Renberg posing by a window.

As a full-time content creator and social media influencer, 26-year-old Stephanie Renberg is no stranger to expressing herself and sharing her opinions with the digital world. But accepting her authentic self didn’t always come easily.

Stephanie’s father is in the military, so growing up, her family moved often. In the fourth grade, while living in Turkey, Stephanie remembers having trouble seeing the front board at school and asking her peers for help. Her teacher also noticed and let Stephanie’s parents know. Her parents took her to an eye doctor, but they couldn't correct her vision with glasses, so she was recommended to a specialist in Germany, which then led her back to the U.S. to the National Eye Institute, where Stephanie was finally diagnosed with Stargardt disease.

No one else in Stephanie’s family has Stargardt disease or any visual impairments, so this news was jarring, and her parents had difficulty handling the emotional side of her diagnosis.

“My parents treated me as if nothing happened,” Stephanie recalls. “So I had this huge diagnosis, and then we didn’t talk about it at all, which was just very confusing as a child. In middle school, when my peers would ask about my magnifiers, I would just say I have Stargardt disease and never went beyond that. But in high school, as my vision loss progressed more rapidly and I became legally blind, it was more difficult to hide my blindness.”

Stephanie felt grateful for the resources she was given when she was first diagnosed, and in high school, she had a vision specialist, Miss Martin, who changed her life.

“My vision specialist had experience with vision loss since her mom was blind, and she was the first person to act like it was “normal” and to not act so negatively toward blindness,” Stephanie recalls. “I was so used to my blindness making people uncomfortable and being a taboo topic that no one wanted to talk about. She called assistive technology ‘blind person toys,’ which made it fun for me for the first time.”

After high school, Stephanie went on to pursue a Bachelor of Science in sustainable biomaterials. However, after having so much support in her schooling prior, she suddenly found it extremely difficult to get her professors to accommodate her disability. After countless efforts, Stephanie compiled all the emails to professors who were denying her requests for accommodations and sent them to the Civil Rights and Equity Department at her university, and she got a call back immediately.

“Because I advocated for myself, it was completely changed overnight,” says Stephanie. “But it’s upsetting you have to take it to a legal place to get people to abide by the law for someone with a disability.”

Similarly, after graduating college, Stephanie entered the corporate world for a year, where she also experienced the lack of accommodations she needed, so she left the workforce. Although these were very negative experiences for Stephanie, they did help her start to become more comfortable speaking up for herself and talking about her disability.

In pursuit of helping others with disabilities like herself, Stephanie decided to start her first social media pages in December 2019. She admits that at the time, she had no idea what she was doing, posting any content that she wanted at first. Stephanie began to spend a lot of time studying other creators on social media and algorithms. One day, she posted a video showing how she uses her iPhone as a blind person, and it went viral, so she continued posting more content on blindness education and assistive technology. Stephanie’s social media presence continued to expand, and in June of 2022, she secured her first brand deal. Now, her social media pages have grown exponentially, with 92K+ followers on Instagram, 48K+ followers on TikTok, and 29K+ subscribers on YouTube.

It's been a long journey for Stephanie to feel like she’s finally accepted her diagnosis with Stargardt disease. She still feels hesitant to talk about her diagnosis with new people in person since she’s had so many difficult encounters over the years, but it’s easier for her to talk about it online.

“Growing up, I had never met anyone with a visual impairment, and it felt very isolating,” says Stephanie. “But once I got on social media, that changed quickly. There are so many people I’ve interacted with and become friends who have Stargardt like me. I’ve been in other support groups, but I always suggest BlindTok because it’s videos and talking, so it’s super accessible.”

Now that Stephanie is able to create social media content full-time, she’s moved to Los Angeles, California, to pursue acting and singing, a dream of hers for a long time. She’s also planning to expand her business and grow her brand as “Better Blind.”

“So many people who are newly diagnosed with a blinding disease reach out to me about what to do next,” says Stephanie. “So I want to help those people access resources available since they can be difficult to find and navigate when first diagnosed. I want to use this platform to provide free resources but also support other disabled creators and artists.”

Even with her new business and ventures, Stephanie wants to continue using her voice on social media to help raise awareness about disabilities like Stargardt disease and to make a difference in those who may be struggling to accept their blindness.

“There’s such a lack of education and awareness in our society about blindness,” says Stephanie. “I just want to use my platform to try and help individuals with disabilities who may be in situations like I’ve been in.” 


To continue following Stephanie on her journey with Stargardt, visit her website and follow her on social media.