The Spinal Muscular Atrophy Podcast with Kevin Schaefer · SMA News Today

#144: Doug McCullough, Advocate and Author With SMA

·54 min·3 clips

Doug rejects “disability as inspiration” and says he was building a talk about shame, stigma, and inclusion.

1. The SMA News Today podcast episode centers on Kevin Schaefer’s conversation with Doug McCullough about SMA, disability identity, and Doug’s book A Billion People in the Shadows. 2. Kevin Schaefer hosts the show, says he has SMA Type 2, and introduces Doug McCullough as a friend from SMA Conferences, a Central New Jersey resident with SMA Type 3 and a former Johnson & Johnson Pharmaceuticals employee. 3. The episode asks how Doug moved from hiding SMA and working in corporate supply chain to speaking publicly about disability inclusion and employment. 4. Doug says his SMA journey restarted at age 11 when he was the slowest runner in class and could no longer keep up in basketball. 5. He describes seeing multiple doctors, hearing an early muscular dystrophy suggestion from a neurologist, and living through the late-1970s lack of diagnostics. 6. Doug explains that tendon transfers in both feet came before high school, followed by a summer in casts from his knees to his toes. 7. He says a doctor later suggested a nerve and muscle biopsy before his senior year of high school. 8. The biopsy removed a piece of nerve from his calf and muscle from his shoulder, and the microscope results confirmed spinal muscular atrophy. 9. Doug grows up on a dairy farm in South Central Pennsylvania, with a mother who taught nursery school and later ran a daycare center at Harrisburg Area Community College. 10. He says his father’s side had several generations of dairy farmers, while he and his younger brother grew up with no family history of SMA. 11. Doug talks about playing tuba, joining band in fourth grade, and traveling to Europe with a high school band before senior year. 12. He says band directors adjusted marching choreography and parade participation so he could take part despite slowing down and falling behind. 13. Doug describes life at Virginia Tech, where he planned to become a veterinarian, joined Alpha Gamma Rho, and later served as president of the dairy club. 14. He says a poor experience in anatomy and physiology pushed him away from vet school and toward graduate study at the University of Florida in dairy management and operations research. 15. Doug explains that a year working on the home farm led to a clash with his father about responsibilities, and he later says a cow slipped on him and broke his lower leg and ankle. 16. He says the family argument ended in reconciliation, and the injury helped him decide to look for off-farm opportunities, eventually leading to an MBA at Duke and a 24-year career at Johnson & Johnson. 17. Doug says he kept trying to hide SMA from classmates, skipped stairs when possible, and felt embarrassed when others noticed him struggling. 18. He recalls fraternity brothers confronting him at a campfire, which became the first time he told non-family members about his diagnosis. 19. Doug says an adult turning point came when a book about a stuttering public-relations executive showed him that self-consciousness was the real problem, not other people’s reactions. 20. The conversation stays interview-driven and reflective, with Kevin pressing on transitions, stigma, accessibility, and the difference between being accommodated and being included.

As heard by us

A calm, reflective conversation about disability, work, and learning that the room is often less judgmental than it feels.

Doug McCullough's conversation with Kevin Schaefer keeps a personal, unhurried pace as it moves through SMA Type 3, career, and the new book, then settles into Doug's shift toward accepting his disability identity.

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Why you'd press play

For a thoughtful conversation about SMA, work, and learning to stop bracing for the room.

Read the full recommendation in PlayNext →

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