Intern Writer, Marie Dagenais-Lewis
[Image Description: A white woman (Marie Dagenais-Lewis) with long dark hair, wears a black top, smiles at the camera, and holds her book Chronically Spooky proudly to the camera.]
Ableism is an archaic form of systemic oppression towards the disabled that is still a normalized part of today’s society. Therefore, it is not a surprise that the mainstream wave of diversity and inclusion has swept right over disability rights. Our culture is built upon centuries of ableist notions that have yet to be challenged…until now. It’s time to address the inequities that plague the disabled while we dismantle The Ableist Society—it is the only way we can have a truly inclusive modern society.
Ableism shaped the way I saw myself for a very long time; I loathed myself, as I was born disabled with a rare genetic disorder called Multiple Hereditary Exostoses (MHE). MHE is known as a bone disorder. However, the reality is, that it is a systemic genetic defect that causes a myriad of symptoms, one of which is bone tumors that can turn malignant. Over the years I acquired more diagnoses than fingers and toes to count them on. But for a while, the only thing we knew about was my MHE.
Growing up with a rare, complex, and mostly invisible condition meant I was consistently invalidated and misunderstood by the world. At the time, medical professionals didn’t understand the full scope of my genetic disorder, and kids can be cruel to something they don’t understand. When my mom tried to advocate for me and let my peers know of my fragility, it backfired enormously as the kids became scared of me. I was the “gross girl with tumors,” and once my best friend at the time screamed at me to “get my cancer away from her.” My disability ended up becoming my dirty secret. Without knowing I was autistic; I was so self-conscious that I couldn’t speak in front of my classmates. My inner monologue, a reflection of an ableist society, was always reminding me how much I hated myself.
It was very difficult for me to live in my body, but I adapted very quickly. Looking back, I hate the phrase “my disabilities never stopped me” since I had to learn to adapt to the pain and be as neurotypical as possible to survive in this ableist society. It’s the systemic ableism that has stopped me in my tracks, as no matter how hard we try there are times we can’t overcome that.
I started my journalism education in 8th grade, where I finally discovered my voice in front of the camera. Continuing that education at a 4-year specialty school throughout high school, I landed my directing career at the young age of 19 in Market 68. When I started, a reporter asked my boss if I was old enough to drive, let alone supervise live newscasts. I thrived in the pressure cooker of a newsroom thanks to my lifetime of dealing with unexpected medical news. Over the years I’ve directed thousands of newscasts, one of which won a VAB award. Despite my hemiplegic migraines, I managed to continue my directing career for two years by directing in the dark, a feat I am proud of. What ultimately ended my almost 8-year broadcasting career was an ableist society and its inability to understand disability rights.
But as cliche as they say, when one door closes another one opens. Experiencing disability discrimination led me to find my new path as an artist and advocate. Over the last few years, I’ve evolved as an anti-ableist thought leader, creator, and mentor. Through this unexpected new life, I’ve been able to find a sense of self-acceptance through disability pride. As the creator behind @r.a.r.e.advoc8 and The Power in Pride Celebration for Disability Pride Month, I’ve had the opportunity to share my story on numerous podcasts and publications as well as events such as the NCIL National Conference and the Facebook Communities Global Summit. In 2022, I was inducted into the Susan B. Daniels Disability Mentoring Hall of Fame and was a finalist for the Social Health Awards 2022 Community Cultivator Award.
I found Lights! Camera! Access! (LCA) during a quest to find a space that valued disability in the media. What started off as participating in ADA LeadOn events transformed into joining the LCA family and marketing team, which is exciting. Now, I get to use my expertise to help amplify the stories that create real disability representation while working to make the industry more accessible. Instead of hiding my disability, I get to celebrate it with a community that finds my existence empowering. Being a part of LCA feels like being a part of a revolutionary movement—together, we will show the world just how capable the disabled are.
About the Author: Marie Dagenais-Lewis is a contributing Intern Writer – with Lights! Camera! Access! (LCA) Newsletter/Marketing Team. She has been with the disability newsletter brand since 2023. Marie is also a storyteller and community galvanizer who creates to dismantle The Ableist Society. When she is not a director and manager, working as the Director of Social, she creates content for her page@r.a.r.e.advoc8. She currently resides in the Blue Ridge Mountains of Virginia with her husband and service dog.
[Image Description: A white woman (Marie Dagenais-Lewis) with long black hair, wearing a dark shirt, and dark lipstick. She holds up one of her hand-drawn illustrations called “PROUD” positioned in front of her.]