Community Spotlight: Doug McCullough

Doug McCullough was raised on a dairy farm in Pennsylvania and now resides in Central New Jersey. He is a self-described “fun-loving guy.”

“I take my work seriously but don’t take myself too seriously,” shared Doug. Doug has been working at Johnson & Johnson for 20 years. He also has SMA Type 3 and is a member of the Cure SMA Adults with SMA Advisory Council.

Doug is an avid sports fan and participates in adaptive sports, such as cycling, kayaking, snow and water skiing, surfing, canoeing, and camping. “Sports are a great opportunity to meet and learn from others with disabilities, and the camaraderie of doing activities with both the other athletes and the able-bodied volunteers,” he shared.

Doug spends a lot of his free time reading, listening to music, and traveling. He has visited 45 U.S. states and 25 countries! “I played tuba growing up and in high school was able to travel through Europe one summer with a band,” Doug explained.

Before connecting with Cure SMA many years ago, Doug had never met anyone else who had SMA. “I have really enjoyed becoming part of the community, both from a social perspective in meeting people like me and from an educational perspective in learning how others manage with challenges in their care,” Doug continued.

“I kept waiting for people around me to tell me it was okay to be disabled, but eventually figured out that people mirrored my behavior. If I accepted my disability and was comfortable with it, then people around me would be comfortable with it.”

– Doug McCullough

Doug became an “accidental activist” after he learned to accept his disability. “I’m somewhat unique in that most of the able-bodied world sees me as disabled and most of the disabled community sees me as pretty able bodied. That means I often don’t fit in any particular group but can relate to just about anyone.”

Doug works hard to promote inclusion of people with disabilities, or just about anyone who feels marginalized in today’s world. He is a leader in Johnson & Johnson’s Diversity and Inclusion community, serving on the global leadership team for the company’s Alliance for Diverse Abilities employee group. This group encompasses those with autism, disabilities, and mental health conditions. Doug also presented at a Johnson & Johnson TEDx event in June 2014, titled “A Billion People in the Shadows,” where he spoke about disability misconceptions. This talk is available to view on YouTube.

Doug believes that “identity” is an interesting term in the disability community. Those in the SMA community often feel a roller coaster of emotions throughout their life from diagnosis to the challenges they face and the achievements they meet. “Despite the historical stigma of disabilities, I never thought of myself as disabled growing up and worked to hide my ‘shortcomings’ as much as possible. I learned SMA doesn’t define me, but it is part of who I am,” said Doug.

As Doug reflects, he shares this: “Every person is my ‘superior’ in some way and in that I learn from them. I am constantly learning from everyone around me and that certainly is true for everyone I meet in the Cure SMA community. My advice to fellow people with SMA, though it sounds simple, is to just do your best and have a positive attitude.”

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