A couple weeks ago, a mother of a child with spina bifida wrote a courageous column titled “My Child With a Disability is Not My Hero,” which has been tumbling around — along with the usual gazillion other thoughts — in my brain.
Now, I’d like to say a few things.
First, I agree in many ways with Sarah Sweatt Orsborn’s perspective as a parent, and I applaud her for being brave enough to write about it so honestly. It’s an important question for parents of children with disabilities to think about. Orsborn writes, “The tendency of parents of kids with special needs and disabilities to say their kids are ‘heroes’ makes me deeply uncomfortable.” She explains that she feels this way because to call children with disabilities “heroes” amounts to demarginalizing and dehumanizing them. They’re just kids, and should be allowed to be kids first and foremost, not put up on a pedestal or given standards that may be tough to live up to.
Now, as someone who grew up and lives with a disability, I’d like to chip in my piece: a “Adult With a Disability” perspective. The idea of calling someone with disabilities a hero just because of what they have and who they are also makes me uncomfortable. Here’s why.
I was born deaf. I grew up deaf. I’m still deaf and will be deaf for the rest of my life.
But I am not a hero. My simply being born deaf or being deaf is no reason to call me a hero. It is just part of who I am. I was born that way. Are you a hero because you were born with blond hair? Are you a hero because you were born with brown eyes? Are you a hero because you were born with a talent for math or a talent for kicking a soccer ball?
I didn’t think so.
Any challenges I’ve faced as a deaf person are challenges constructed by society, not created by my lack of hearing. My growing up deaf and “beating the odds” that said I’d never read beyond a third-grade reading level and get a college degree — much less a graduate degree — is no reason to call me a hero. I am not a hero for putting up with society’s assumptions about normality and about what people with disabilities can or can’t do. I am not a hero for “beating the odds.” I am not a hero for meeting my potential.
If you want to call me something, call me a survivor. I am a survivor of a society that thinks about me in terms of what I can’t do. I am a survivor of a medical system that told my parents what to expect and accept based on cold science and statistics, not on heart and soul and raw potential. I am a survivor of an educational system that did not fit my abilities, that had to be forced to accommodate me. I am a survivor because I looked self-esteem-damagingly low expectations in the face and defied and exceeded them. I am a survivor every single time I get a “you can’t” and give back a “fuck you.”
Everybody has survived something. Some people survive a terrible childhood. Some people survive car accidents. Some people survive rape or assault. Some people survive cancer or serious illnesses or poverty or unemployment. Every single adult friend or family member of mine I can think of has survived a serious challenge in their past or is surviving one in the present. We’re all given challenges to deal with, to learn from, to grow from. If you want to talk about “overcoming” challenges, either we’re all heroes or we aren’t.
In my opinion, being a survivor is not the same thing as being a hero. Survivors can be people you deeply respect. They can be role models, people you admire or want to emulate. But they are not heroes. That’s something different from being a survivor or role model.
Being a hero is not about being who you are, or having something you were born with or exceeding expectations or dealing with a personal challenge or about what you do every day to live just like everyone else. It’s about what you do for others and how you change lives and society for the better through your actions for others.
Elie Wiesel is a hero not because he survived the Holocaust, but because he then dedicated the rest of his life to fighting ignorance, racism and genocide. Martin Luther King Jr. is not a hero because he survived growing up black in the Jim Crow South, but because he spoke out, fought, marched and sat-in for equality and civil rights. Malala Yousafzai is not a hero because she survived being shot in the head by the Taliban, but because she continued her fight for education and women’s rights. These people are not heroes because of the lot they were given in life, but because of what they did with it for others.
In my story of growing up deaf, I am not the hero. My parents are the heroes. They put in the sweat, tears, long hours, stubbornness and persistence to break down barriers and teach me how to bust them down myself. They acted, and they did it for someone other than themselves. They changed the schools, they changed our church, they changed my hometown by always pushing for access, not only for myself, but also for any deaf children in the future who might want to play softball or ride horses or go to the theater. Anyone who partnered with my parents to actively work to change expectations and improve access for deaf kids like me are also the heroes.
I only walked through the doors that they opened for me throughout my childhood. I am not a hero for walking through these doors.
I do not want to be called anyone’s hero until I do something that creates change for the better, whether it be change in one person’s life or in a town or a country or the world.
When that day comes that I’ve changed someone’s life for the better through my actions — not through just being who I am — then you may call me a hero.
Until then, please don’t.