The CACTI Blog: The Mirror - How Shared Experiences Inspire Confidence and Change
By Reagan Imhoff, 2024-2025 DISCAPAZ VIP
I’m typically recognized by my big smile and power wheelchair that I have been driving since I was two years old. I am a seasoned veteran when it comes to doctors, hospitals, and physical therapy appointments. I know the feelings of frustration and disappointment of one’s body not being as healthy and strong as one’s mind. I also know how it feels to persevere and find joy. My life looks nothing like how I thought it would ten, five, or even two years ago, but I am so happy it doesn’t. I have discovered how to be confident in who I am and learned the importance of community, and this was developed through my advocacy work with the Muscular Dystrophy Association (MDA).
My favorite part of being a former MDA National Goodwill Ambassador was connecting with my peers living with neuromuscular diseases. Hearing their stories and personal experiences made me feel like I was a part of something bigger than myself. Alongside other MDA advocates, I traveled to Washington, D.C. in May of 2023 to advocate for accessible air travel. For people with disabilities, air travel is one of the most anxiety-inducing experiences. Airlines are the only public transportation that do not have to follow and enforce Americans with Disabilities Act guidelines, which provide bare-minimum and long-term access so people with disabilities can experience the world. On airlines, people with disabilities often have to part with their mobility aids on the flights, and if the crew doesn’t have proper training to handle this equipment, the likelihood of the mobility aids breaking is high. Airlines also classify wheelchairs as luggage, so if a wheelchair breaks, they can shrug their shoulders, not claim responsibility for damaging them, and drag their feet on covering the cost. I have had multiple wheelchairs damaged or destroyed in front of my eyes and I was left helpless, watching my independence and ability to experience the world be broken beyond repair.
I did not want this pain, anxiety, inaccessibility, and lack of freedom to happen to other people with disabilities. This sentiment was shared by the other MDA advocates I met in Washington, and we advocated to improve accessible air travel through adding accessibility provisions to the Federal Aviation Administration (FAA) reauthorization.
Madison Lawson–a journalist featured in Allure, Vogue, and Forbes–and I met during this advocacy trip. I remember her messaging me on Instagram a week before the trip and saying how excited she was to meet me. I remember hearing her squeal down the hallway when she saw me. Ignoring what other people in the hall would think of the two women waving and screaming at each other, I rushed to her side and hugged her. After the briefings with MDA, the other disabled advocates and I prepared for a fight–armed with our knowledge, stories, and voices. Sharing our pain and stories of how ableism impacted us was so important. Voicing the rage at the constant invalidation of my community’s experiences and our lives is difficult to explain. However, when I talked to Madison and the other advocates, I felt less alone. We cried, comforted, and laughed at what we had gone through and were still going through. I openly raged with them, and we shared our deepest wounds and dreams with each other. Having these shared experiences was amazing, because the other advocates and I were mirrors to each other. We saw each other’s pain and felt our own reflected back at us... just in a somewhat different way. We saw each other’s joys in all their complexities and beauty. We saw other people who might have looked different but who, if even for a short time, were united together and saw the power in that.
Sometimes, it is difficult to share a piece of myself that is so angry and so hopeless, but Madison and the others provided me with a safe space to share my uncensored stories, dreams, and joys. I realized that I had made a true friend when Madison told me that, “As much as having my chair broken by airlines sucks, I’m endlessly grateful that it brought me to you.” She proudly displayed her confidence, grace, and uncensored stories with the world and me. This made me want to be brave and realize that displaying my pain and joy openly could help others do the same. I have never forgotten the gift the other advocates gave me, and now, I share my truth and experience with other people to help them feel less alone.
The CACTI Blog features the voices of our interdisciplinary trainees and Community Advisory Council members as they highlight diverse images of people with disabilities and provide community information and advocacy on disability issues. Check Out The CACTI Blog