Hero?
I was once asked what I thought about calling individuals with DMD heroes and warriors just because they have a disability.
True, it’s challenging to have DMD, but every person on the Earth has a struggle of some sort, and no one understands someone else’s fight. You bemoan your fate, but if you had to live with my normal, you might handle it better than I do, and I may handle yours better than you. However, I don’t see myself as a hero or a warrior just for living my life. I’m just doing what I have to do.
Hero Negatives
Believe it or not, calling a person a hero can actually have negative effects on their self-esteem.
For example, I grew up in a small town and am pretty well known. I struggled to be “normal” most of my life until I realized there’s no such thing. When I was diagnosed with DMD, my family was told I might reach 18. I wouldn’t accept that. I lived my life as though by 18, I wouldn’t have muscular dystrophy. As a 39-year-old with DMD, you can guess how well that went. I just wanted to live a productive life. I hated it when someone said, “If Ryan can deal with what he does and never complain or feel sad, I know, I can’t complain,” or “I can handle anything.”
As unintentional as it is, the “hero” label can actually complicate matters as adolescents and young adults with Duchenne grapple with their own self-identity, particularly when they already have so much to bear. But those details are for another article.
Even as an older adult, it isn’t easy. There are days I feel sad and don’t want to do anything. I’ve often cursed DMD and didn’t want it. But then there were so many people that I felt I would disappoint or relied on me to be strong that I couldn’t express my feelings. I finally learned to do it and found it was beneficial, and it also helped others to see that Ryan has hard times, too.
Facilitating a Hero
My uncle was highly decorated in the military and, by all rights, was a hero for the gallant deeds he did. He would never say he was a hero. He just did what he had to do.
I’m not saying people with disabilities are not warriors and heroes, but most people don’t want to be called a hero just for being alive.
For example, I don’t want to be known as Ryan Russell, the guy in the wheelchair. I want to be known as Ryan Russell, the Dr. of psychology, the Eagle Scout, the author of Rectify the Avenging Angel, or the most important to me, a son who took care of his parents in their last days.
So when you tell your loved one or friend they are a hero, make sure they know they are a hero for something besides having a disability.
By Dr. Ryan J. Russell
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