56: Episode 55 - Unpacking Disability Pride: Voices from the MDA Community

In this Quest Podcast episode, we chat with MDA Ambassadors, Payton Rule, Fred Graves and former MDA National Ambassador Amy Shinneman. Payton shares a journey of transformation from self-doubt to pride, emphasizing how important community has been in helping her feel seen and valued. While Fred offers a perspective rooted in resilience and advocacy, discussing how he’s navigated life with a disability by focusing on his strengths and passions and reflecting on the daily decisions he makes to affirm his self-worth, despite encountering ableism or societal barriers. Amy also speaks about how her understanding of Disability Pride has grown over time, especially as she’s learned to embrace her disability as part of her identity rather than something to hide or overcome. These ambassadors share their experiences, expertise and advice when it comes to a celebration of identity, strength, and the ongoing journey toward empowered self-expression, disability pride and navigating life.

Transcript

Guests:

Amy Shinneman is a disabled blogger, a columnist for the Hamilton County Reporter, and freelance writer living with Bethlem myopathy. She has had symptoms since birth but did not receive a diagnosis until she was 44 years old – thanks to genetic testing. She is the mom of two college-aged sons. She enjoys painting with acrylic and oils, cooking, baking, reading, and exercising. She also enjoys training for marathons with her husband, Jamie, who pushes her on her duo bike. They have competed in multiple marathons together.

Connect with Amy:

• Facebook – amy.l.shinneman
• Instagram – @ashinneman

Fred Graves lives with limb-girdle muscular dystrophy (LGMD) and has a passion for disability advocacy. He loves spending time with his son, and his interests include music production, drones, sneaker collecting, travel, and staying connected to his MD/LGMD “fam.”

Connect with Fred:

• Instagram: @kngfrd

Payton Rule is a Clinical Psychology PhD student at Washington University in St. Louis, where her research focuses on wellbeing among individuals with disabilities. She was diagnosed with Charcot-Marie-Tooth disease (CMT) at the age of five. In her free time, Payton enjoys playing wheelchair pickleball, spending time with friends and family, and exploring local parks with her dog.

Host:

Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck.

Connect with Mindy:

• LinkedIn: https://www.linkedin.com/in/hendersonmindy/
• Instagram: https://www.instagram.com/mindyhendersonspeaks/