By Marisa Conners
I am an aspiring and passionate fashion-loving entrepreneur, designer, techie, blogger, content creator, and disability advocate with big dreams and a very full life. I am almost 30 years old. I was born and raised in Cincinnati, Ohio. I was also born with cerebral palsy. I am hard of hearing, I cannot talk, and I am a full-time AAC user who communicates through my iPad and gestures. My mind has always been sharp, creative, and ambitious. While my body may move differently, my disability does not mean I can’t have a good life and achieve my dreams. Today, I divide my time between Cincinnati and Florida—a place I hope to call home permanently one day.
In my experience, Medicaid is not just health insurance. Medicaid is the foundation that allows me to live with dignity, purpose, and autonomy. I am currently on a Medicaid waiver which gives me access to the services I need, including communication support, assistance with home chores, and self-directed personal care. These essential services allow me to live independently, maintain my routine, and manage my daily life with confidence.
One aspect of Medicaid that is especially important to me is how it enables me to oversee my own caregivers—including friends and other people I trust. That control matters deeply. It means I am not just receiving care; I am directing my life.
I actively direct my caregivers to assist me with my daily personal care, ensuring my needs and preferences are respected. I take the time to teach my caregivers how to communicate with me effectively, and I use a captioning app that allows me to read their voices in real time. This approach helps create clear communication and mutual understanding. My caregivers truly listen to me and support my decisions. Because of this supportive caregiving environment, I have been able to experience national parks, Alaska, and more destinations around the world, where my caregiving team and I have traveled.
After I graduated from high school in 2015, Medicaid made it possible for me to follow my path to professional success. Medicaid guaranteed my care needs were met so I could focus on building my own career, telling my story, and making meaningful contributions to the world. I attended college for two and a half years and decided to leave in December 2017, after the semester ended, because I realized that college wasn’t fulfilling my career aspirations. I made the decision to teach myself and start pursuing my career. Looking back, it’s one of the best decisions I’ve ever made! I now have a background in fashion, graphic design, and digital technology, and I have a substantial interest in adaptive clothing which I have designed for other people with disabilities.
Being able to pursue my passions has helped me gain much confidence, knowledge, and life experience. I have been self-employed for five years obtaining multiple remote jobs. Working remotely allows me to advocate, create, and earn in ways that align with my creativity and my communication style. Remote work is the best thing for me since I have physical limitations due to my cerebral palsy. My remote work is a significant part of my independent life. I hope to inspire people who have similar challenges as me to lead meaningful and productive endeavors.
My parents, caregivers, family, and friends have always supported my goals and aspirations. Because of Medicaid rules, my personal income is limited, and for my whole life, I have lived in a family home with my parents who are close to 70 years old. My dad, in particular, who has worked for over 40 years, inspired me to become a great businesswoman—I call him my hero. While I am grateful for both of my parents’ support, my vision for the future is clear. One day, I will be a homeowner with 24-hour care assistance, living independently and fully on my own terms. Medicaid makes that future imaginable, not unrealistic.
Medicaid is the system that has allowed me to grow, dream, travel, and work remotely. To me, Medicaid means access, stability, and the quiet force behind my independence.
Check out our other posts related to Medicaid advocacy: Advocating for Policy Change, What Would You Do Without Your Aide?, and “We Take Care of Our Own:” Protecting Medicaid. You can also connect with our guest blogger Marisa Conners and link to her social media via marisaconnersofficial.com.
Download Marisa's post in PDF form here. Access post via Google Doc here.
Image Descriptions:
[Image 1: Marisa Conners wears a sparkling pink formal dress and poses in front of a background filled with golden lights, stars, and orbs.]
[Image 2: Marisa Conners wears a flowing pink blouse and sunglasses. Behind her is a glacier.]
[Image 3: Marisa Conners stands in front of her wheelchair, fists raised triumphantly. She models a yellow floral dress she designed and a white headband.]