My Road to Madvocacy

My first experience as an advocate was more than twenty years ago. I greeted my eight-year-old sister Chavon, who had fiber-type disproportion myopathy, as she descended the wheelchair lift on her school bus. It was Halloween, and she was in tears.

Bullies on the bus had taken the candy she had received from her class Halloween party, she told me. I let her pass me to enter our house and I stepped onto the school bus.

“Who has her candy?” I demanded. “Who took it?” I waited for a few moments.

A teenaged boy reached into his bag and bashfully handed me the stolen goods.

“This better never happen again,” I glowered, meeting the eyes of the school bus driver. I turned swiftly and exited the bus, riding the fumes of my adolescent outrage.

I handed the candy to my sister, and in that moment, I became her hero.

Over the next 19 years of her life, I witnessed her needs and my mother’s quiet but effective way of getting these needs met. I also advocated for my sister many times, especially as she neared and entered adulthood. When she was treated unfairly at school or at work, or when a landlord made unreasonable demands due to her disability, I used my voice to support and supplement hers.

Nine months before my sister passed away at the age of 27, I gave birth to a son, Richie, who was also born with fiber-type disproportion myopathy. My mission for advocacy continues as I fight many of the same battles, and some brand new ones, for his care, education and wellbeing.

The path can be maddening. Claim denials, hoops and red tape, and basic institutional cheapskating are the major instigators of steam from my ears, but success is possible.

My son and my sister are the reasons I advocate; empowering others is the reason I became the Madvocator.

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Charisse Montgomery is the author of the Super Safe Kids series of books and safety tools. These tools engage children, parents, and their families in improving safety and advocacy in the hospital, the community and the home. A former educator, Charisse Montgomery has earned bachelor's and master's degrees in English, along with a master's degree in Educational Psychology, with research focused on informing and empowering parents of medically fragile children. She completed a graduate certificate in Patient Advocacy and serves on the Board at Rainbow Babies & Children's Hospital.

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