hero (noun): a person admired for achievements and noble qualities; one who shows great courage
Beyond both being providers, there’s one more thing my surgeon and physical therapist have in common: they have both repeatedly told me not to be “the hero.” My surgeon would tell me not to be the hero during follow-up appointments after surgery; my physical therapist would tell me the same thing during treatment sessions.
I’ve spent some time unpacking what being “the hero” might mean. If a hero is “a person admired,” wouldn’t that designation be a positive thing? Yet it always seemed negative whenever I heard it from my surgeon and physical therapist, and back then I wondered why. Who doesn’t want to be admired? Who doesn’t want to be noble? It didn’t make sense to me at the time.
Subconsciously, I think I associated being “heroic” with a sort of sacrifice. Apparently I thought I was the person who was always going to, and willing to, bear and withstand the physical pain that came bundled with therapy treatments and recovery from surgery…but the question is why? Did I want to be labeled as a “hero” because I was and would always be the disabled kid with something to prove? Is it why I feel I always have to prove myself to other people even now, particularly people who are non-disabled, because I constantly feel doubted and underestimated by them?
On a deeper level, though, what if I never wanted to be labeled as a hero? What if being labeled as heroic because of my disability is actually problematic?
Whenever my surgeon or physical therapist would tell me, “You’re not a hero,” or, “Don’t be the hero,” I remember, in my naivete, having one thought:
Sociologically, the hero framework in the context of disability suggests that it’s the disabled person’s sole responsibility to “work harder,” fight against, and eventually overcome the barriers that present themselves in life with a disability. If it’s the individual’s responsibility to overcome those barriers and everything else, it absolves society from making our world a more accessible place, not only in the physical sense, but also in what I like to call the “consciousness” sense. Raising the “level of disability consciousness” for the non-disabled person is extremely important, because then, as it follows, they wouldn’t burden a disabled child with that “heroic” title of sorts. It puts an almost insurmountable amount of pressure on me as a disabled person, particularly because what I was dealing with didn’t seem especially out of the ordinary or spectacular. I was, I am, simply living the life I was given like everyone else. I owe that mindset to my parents, who raised me as disabled with a great sense of normalcy, frankness, toughness, and high expectations for success. Mom and Dad never wanted me to feel like I was different, or strange, or defected. I was just me.
Yes, I fought to learn how to walk, how to run, and how to do it all over again. Does that make me heroic, or does it make me human?
The Spastic Diplege 