My name is Doug and I have a progressive form of muscular dystrophy.
That may seem like a simple enough statement, but it took me a long time to admit that to people. There is such a demoralizing stigma about disability. Growing up on a dairy farm in south central Pennsylvania, I didn’t know anyone else with a disability. You better believe I hid mine as long as I could. People would notice my walk was a bit off and ask if I was okay. I’d respond, “Oh yeah, I just pulled a muscle working on the farm.” In college, sometimes I’d be late for class because I didn’t want anyone to see me struggle going up a set of stairs. As my body got weaker, I couldn’t hide it anymore but strived to continue living a “normal” life.
People have been calling me inspirational for 30 years. I know it’s intended to be complimentary and for a while I appreciated it. But eventually I realized that it is just the flip side of the coin from being pitied. In a way, being called inspiring means others were saying my disability was a shortcoming, something I need to overcome. That just living a full life was an amazing feat because I am different and not truly accepted as I am.
My disability is a result of my genes, no different than genes that control eye or hair color. Find a person with blond hair. You wouldn’t walk up to Jim and say “Jim it is really amazing that you live such a full life with your blonde hair. You should be really proud of yourself for being out and about with your blonde hair.” Or here is a more common example. I have a friend with Cerebral Palsy that I met through an adaptive sports program. He goes to the gym regularly and constantly has people come up to tell him what an inspiration he is. He’s thinking “I’m just a regular guy trying to get in my workout.”
There certainly are people with disabilities that are inspiring, but let’s be a bit more judicious in our use of the term. Every one of us has things we are good at and things we are not good at. At the end of the day, we all strive to do the best we can with whatever talents we have.
Now when someone tells me I’ve inspired them, I say that’s great but inspire is an action word. What have I inspired you to do? I’ve received many nice comments since I’ve started sharing my story, but the most rewarding is when someone tells me they took action. The teacher that forwarded a talk I gave to their school superintendent who showcased it during a teacher in-service day for the whole school district, the volunteer who was renovating their community playground and said we need to add some accessible playground equipment so that ALL children can play here – those are people I inspired, and I’ll take that compliment any day.
Doug McCullough is a Supply Chain Senior Manager for Johnson & Johnson. He received a Bachelor of Science and Master of Science in Dairy Science from Virginia Tech and the University of Florida, respectively, as well as an M.B.A. from Duke University. Doug, who has spinal muscular atrophy (SMA type 3), is active in adaptive sports, recreation and travel programs. He has volunteered with local MDA offices in Wisconsin, North Carolina and New Jersey. For the last several years, Doug has been doing public speaking on disability and inclusion, and he’s been active in starting an employee disability group at Johnson & Johnson. He is a member of MDA’s National Community Advisory Committee.
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