Embracing My Differences and Advocating for the Disability Community

In 2013, at age 13, I was diagnosed with Congenital muscular dystrophy (CMD) and restrictive lung disease. My proximal muscles are weak: legs, hips, neck, and core.

I fatigue easily, so walking is difficult, and I cannot walk long distances. I use bilevel positive airway pressure (BiPAP) at night to assist me with breathing.

It wasn’t until I went to MDA Summer Camp at 15 that I started embracing my diagnosis and advocating for the community. Before then, I was lost and in complete denial. I wanted nothing to do with my disease. Summer Camp was a transformative experience. I made lifelong friends and gained a support system of people who understood what I was going through. I knew I wasn’t alone, and it fueled a passion and love for a community I was now a part of.

Discovering my passion

Olivia Holler graduated from college with a degree in journalism. Olivia made friends and built confidence at MDA Summer Camp.

Transitioning into a power wheelchair during my freshman year of high school opened my eyes to barriers and challenges I didn’t know existed until I had experienced them. Some people would stare at me, ask my family what happened to me and not ask me, or treat me like a child because I was in a wheelchair. These things frustrated me and fueled me. From that moment on, I wanted to educate others about the disability community.

I used my passion for writing and communicating to connect my passion for bringing awareness about my community. I started a blog to share my experiences of living with a disability. I hoped to influence others with disabilities to start sharing their stories and help those who do not have disabilities gain more understanding of the community and not make assumptions.

The blog made me realize I wanted to go into journalism. If I had the gift of writing, why not use it to empower others to share their stories and amplify their voices? I attended the University of Missouri-Columbia and received my bachelor’s degree in journalism in 2023.

My journey through college also exposed me to unaddressed accessibility barriers. As a member of the Chancellor’s Committee for People with Disabilities and Vice President of the Mizzou Disability Coalition from 2020 to 2023, I helped improve campus accessibility.

I also kept writing about my lived experiences. One thing I learned from my college journey as a disabled individual is that people don’t know what they don’t know, and bringing awareness is the way that people will understand.

A time of transition

After graduating from college and returning home, I struggled to find resources for independent living and transportation, and funding for services. The services I needed had always been given to me. Now, the ball was in my court to find the resources and communities to support me.

Because of this challenging time, I wanted to share what I found with other young adults with disabilities, so I created my disability advocacy brand, Rolling with Liv. This brand includes a website where I provide resources that I have found helpful, a blog that showcases my story, and social media where I share day-in-the-life posts, bathroom reviews, and more. I also interview friends and people in my support circle on my podcast. With this brand, I hope to bring awareness and education while utilizing the journalism skills I gained in school.

Ready for the future

It took time to be where I am now, and the journey was not easy, but embracing and accepting my disease has given me the confidence to keep fighting for the future of accessibility and inclusion.

I aspire to make a meaningful impact on the disability community through my writing and communication skills. I want to continue sharing my journey and experiences to raise awareness and create a more inclusive and supportive environment for individuals with disabilities.

Reflecting on my journey and how far I have come, I realized it started with MDA Summer Camp. At camp, I was able to be myself without fear of judgment and self-doubt. If I hadn’t gotten to experience camp, I wouldn’t be where I am today.

Olivia Holler, 23, lives in Lake St. Louis, Missouri, with her family. When she’s not writing and podcasting for RollingWithLiv.com, she enjoys reading and crafting.