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When I Questioned My Decision to Be a Disability Advocate


Caught in the midst of a midnight musing, I found myself trapped in a panic. For the first time since fully claiming my disability identity, I felt lost, alone and uncertain. I feared that in spreading awareness about my medical condition, candidly highlighting both the victories and the struggles of living with cerebral palsy, I was losing those I hoped would listen.

Utterly disheartened by the prospect of screaming to a bewildered audience in a dead-silent room, I let the tears cascade down my cheeks as I desperately searched for an answer to the very question that has puzzled many before me.

How can I be an effective advocate?

As I felt the storm swelling inside of me rise, threatening to erupt, I began to wish away the immutable, longing to push my long-held secret, my disability, back into the protective confines of my heart. My fruitless pining for the precariously ideal life I had led for years left me with a spate of unanswered questions.

Why? Why in the world did I choose to open up about my disability? Why do I even have cerebral palsy if I can’t seem to use my experiences to educate and advocate, to help others see a new perspective?

Suddenly I was once again the naive 12-year-old girl longing to hide her disability, the girl who was a decade away from seeing cerebral palsy as the blessing it is.

I was once again the shy 15-year-old girl who craved acceptance at any cost, the teenager who believed concealing her disability was her only option, the girl who felt completely alone, dampening her bedsheets with tears as she wondered why she was born with cerebral palsy.

I was once again the self-conscious 17-year-old standing in front of the mirror, analyzing every step she took, searching for self-love but discovering a pit of internalized ableism she longed to combat, the girl slowly learning to reveal her disability in small doses, the girl witnessing genuine kindness in the wake of her wavering glimpses of complete transparency.

I was once again the 21-year-old college graduate fearing her uncertain future, holding her disability close to her perpetually guarded heart, but longing to be free from the confines of her secret life, the woman wondering if revealing her disability would be the solution she sought, the key to a fulfilling future.

In the wake of my tears, as my past collided with my present, I re-discovered my purpose, the desire that fueled my advocacy.

I advocate for the 12-year-old who longs to hide their disability, in the hope they will discover that disability is a gift and living a life of openness will lead them towards true happiness.

I advocate for the 15-year-old who feels completely alone in the wake of their tears, in the hope they will learn that differences are something to celebrate and realize they are never as alone as they feel.

I advocate for the 17-year-old who struggles with body image as they slowly work towards self-love, in the hope they will know that their strength in the face of obstacles is beautiful and discover the world around them is kind.

I advocate for the 21-year-old who worries about the future, struggling to disclose their disability and hoping their medical condition won’t hold them back, in the hope they will find that sharing their story could become their fulfillment, the missing piece they’ve been searching for all their life.

I advocate through doubt, uncertainty, and trepidation because I was born to use my voice to foster hope for those living with disabilities.  Even in my darkest moments, I continue to advocate because I know that somewhere, someone hears me — and just one listener is enough to spark change.

Originally published on Thought Catalog.

Getty image by Antonio Guillem.