The 2013 documentary film “Bernadette” was a milestone for Bernadette Scarduzio in many ways. It wasn’t just the first movie project she was a part of, it also was a coming out for her. The documentary marked the first time she came out as gay and her first time sharing with the world her story as a woman affected by Charcot-Marie-Tooth disease (CMT). Now, she’s recognized as an icon and advocate in the CMT community.
After watching “Bernadette” several days ago, I reached out to her. I wanted to hear how life has changed for her in the decade since the filming of “Bernadette” and what it’s been like to be a public figure with CMT.
Any doubts that the documentary accurately captured her personality were erased within a few minutes of chatting with her.
“Bernadette” certainly captures Scarduzio’s self-admitted brash and edgy flair. She can be blunt, doesn’t hesitate to curse, and has an earnest laugh. But while her personality and her passion may not have changed since the documentary’s initial release, Scarduzio said many other aspects of her life have.
For one, she’s quit smoking cigarettes and she’s no longer with the woman she was dating while filming was in progress. Furthermore, her CMT symptoms have advanced. She relies on caregivers these days and drives an adaptive car.
However, the passion that drove the telling of her CMT story has stayed the same. It’s a passion she said she fostered from a young age after years of school kids making fun of the way she walked. According to her, she’s only become more inspired since her father passed during the filming of “Bernadette.”
“My family didn’t really talk about it, but I wanted to talk about it,” Scarduzio said. “I wanted people to know what CMT is. And I was ready. I had spent my whole life limping and on crutches and on casts and I was over it. I was over caring about what people thought of me.”
As a teenager, she dreamed of speaking about CMT on “The Oprah Winfrey Show.” While that never happened, folks around the world still found her story through “Bernadette.”
“I made a commitment to be a face of CMT and [“Bernadette” director] Josh Taub gave me the wings for it, and now I felt like I’ve got to do something,” Scarduzio said. “And I want to keep on making my dad proud. And I want to continue reaching out to people who have CMT.”
Folks around the world have been responding. Especially since Amazon Prime Video streamed “Bernadette,” people have been emailing Scarduzio to share their own stories and some have made a pilgrimage to visit her in person.
Nowadays, Scarduzio occupies her time by advocating for the disabilities community in other ways beyond the scope of her documentary film. For the past five years, she’s been working for the Hereditary Neuropathy Foundation as a social media coordinator. And she is pushing for beach cities to adopt Mobi-mats to improve access for everyone as well as applying for acting roles to try to increase the visibility of the disabled community in the media.
“I feel the need to keep on sharing my story,” Scarduzio said. “And I will continue until the day my heart stops beating because people need to know what CMT is and that it affects so many people out there.”
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.