Advocating Like My Life Depends on It

Advocating Like My Life Depends on It

Advocate. This was a badge I unconsciously affixed to my vest as a child.

Watching my mother fight tirelessly for my educational rights, inclusion, respect, and dignity in every sphere colored my world. Translated to me through her actions, relationships with my doctors, teachers, therapists, and every other person entering my orbit was the message that I was worth it. Learning to become my own advocate was not only crucial for my health, educational success, identity, and self-worth, but also for a broader mission beyond myself.

When the gossip mill churns zephyrs of misinformation about somebody during her high school career, she often adds this to her résumé of flippant rebellion. When rumors persist with contagion and the notorious recipient is 6 years old, it is far more likely she will dissolve into a puddle of confusion and hysteria.

Differences in my method of walking, talking, and general balance and coordination configured me into a blond bull’s-eye for teasing. With my multicolored, fluorescent braces strapped to my skinny legs, I symbolized a beacon of the unknown.

Though I would later come to realize that the etiology of cruel comments came not from my ponytailed classmates, but rather from their parents, this did not matter at the time. What concerned me was that the other kids chose not to use the same crayons as I did because they feared whatever terrible malady swimming through my bloodstream was contagious. I was a monster. And they did not want to become monsters, too.

Attempting to disarm erroneous assumptions can be challenging. Ironically, the more ridiculous and incorrect they are, the harder it was to convince my peers that the differences we shared were fewer and far less cataclysmic than they had envisioned.

No, cerebral palsy is not congenital.

No, my disability is not contagious.

No, I am not retarded.

No, I did nothing wrong to acquire a disability, and neither did my mother.

Yes, hard as you may find it to believe, I am human. I feel, think, dream, and desire a fulfilling life, just like you do.

While my peers were learning to read and follow directions, I was simultaneously fighting for an education while educating my educators. More hurtful than the inhumane knives hurled at me by my peers were the teachers condoning them.

With their refusals to accommodate my lawfully mandated adaptations, and their assertions that it didn’t matter because I would never amount to anything anyway, battling antiquated ideologies was a full-time job thrust upon me. And they say public education is free. In complex ways, I paid a hefty price for the learning that I earned.

For every academic skill I mastered, I simultaneously had to convince a number of reluctant bureaucrats that I deserved every equal opportunity, that I would accept nothing but the best, and that I would be showing up, day after day, to get it.

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Note: Cerebral Palsy News Today is strictly a news and information website about the disorder. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.

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