We were lucky to catch up with Kevin Schaefer recently and have shared our conversation below.
Kevin, thanks so much for taking the time to share your insights and lessons with us today. We’re particularly interested in hearing about how you became such a resilient person. Where do you get your resilience from?
I’ve lived with spinal muscular atrophy (SMA) my entire life. SMA is a neuromuscular disability that affects my voluntary muscles and progresses over time. Living with SMA has shaped my perspective on many things, especially resilience. Having a disability like SMA is more than just using a wheelchair every day. It’s fighting for basic accommodations in public spaces. It’s managing a team of caregivers to get my daily needs taken care of, and it’s adapting when people leave and I have to hire new assistants. It’s getting up each day when I don’t feel like I have enough energy to face my obstacles.
I tell people all the time that being disabled isn’t a bad thing. While living with SMA comes with plenty of challenges, it makes me more resilient and empathetic.
Great, so let’s take a few minutes and cover your story. What should folks know about you and what you do?
I work for a digital media company called BioNews Inc. We provide news, patient and caregiver columns, and community resources for people affected by rare diseases. I joined the company in 2017 as a columnist for our SMA site, writing stories about my life, often through a humorous lens. I now work in management, working with people in rare disease communities across the globe.
While I never planned on having a career that connected to my disability, I now couldn’t imagine anything else. I exercise my strengths as a storyteller and connect with some of the best and most compassionate people in the world.
If you had to pick three qualities that are most important to develop, which three would you say matter most?
The three qualities that have been the most important in my journey are communication, resilience, and empathy. For people who are just starting a new career path or a new chapter in life, I recommend connecting with the right people and pursuing the things that matter to you.
What was the most impactful thing your parents did for you?
My parents treated me the same as my nondisabled siblings. They gave me the tools and support I needed, but they taught me to utilize my skills and to advocate for myself.
Contact Info:
- Website: https://smanewstoday.com/embracing-my-inner-alien-kevin-schaefer/
- Linkedin: https://www.linkedin.com/in/kevin-schaefer-a5992419b/
Image Credits
Second photo: Me, Allie Williams, Brie Albers, Jose Flores, Shane Burcaw, LaMondre Pough, and Kevan Chandler at the 2023 Cure SMA conference
