The classic age-old question is, if you could speak to your younger self, what would you say? As I slide into my sixties, I’ve come to appreciate many of the words of wisdom spoken by my parent’s generation. But, when I was a young disabled advocate, I ignored any advice from my elders because none of them were disabled. So, I automatically disqualified their opinions because how could they relate to being disabled? Further bolstering my pride was the fact that school administrators kept telling me that I was one of the pioneers of inclusive education. These and other circumstances set me on a path to find out things for myself without relying upon the opinions of others. Now, I sigh at the martyr mentality that fueled my actions so many years ago.
With age comes perspective. I remember every stage of my life from childhood to adolescence to adulthood and now my AARP years. I often fancy what would happen if I could go back in time to have a chat with my strong-willed twenty-year old self. By that age, I had already accomplished quite a bit as an advocate for myself and other students with disabilities. Between the ages of thirteen and sixteen, I was a full-inclusion student at a regular middle school and high school. Those two academic institutions never had a fully-included student with a disability. So, with these hard-won triumphs in my back pocket, I knew that I could draw upon previous experiences to tackle future obstacles.
Recently I had the opportunity to interact with a young boy who I saw as a younger version of myself. Back in March, I attended the Abilities Unlimited Expo at the Los Angeles Convention Center. There were three lines to enter the building. As I sat in my wheelchair, I saw a boy, around seven years old, who had cerebral palsy. He was with his mom, dad, and slightly older sister.
The parents appeared to be in their late twenties. Their collective body language gave me the impression that they had never been to an Abilities expo. The boy’s mother, who was pushing his wheelchair, appeared to be a little anxious as her eyes tried to soak in the scene of hundreds of wheelchair users and over one hundred vendors. I could instantly tell that she was looking for options and answers on the best way to give her son the best life possible. Moreover, if she was anything like my late mom, she had grown weary of doctors who put limitations on her son.
At the time of my birth, sixty years ago, my birth doctors told my parents to send me to an institution for the rest of my life. Back then, it was common practice for doctors to advise institutionalization for brain-damaged infants and children. Furthermore, my mom was told to do herself a favor by removing the unnecessary burden of caring for a child who would be in a permanent vegetative state. Through my own experience, and talking with others who have cerebral palsy, I’ve come to the conclusion that although there have been many medical advances in the past six decades, how medical practitioners view cerebral palsy remains stuck in the dark ages. Because, even today, many doctors of infants with cerebral palsy still give the lazy gloom and doom prognosis.
So, I wanted to reach out to them and give them hope. Because, as egotistical as it may sound, the progressive path of my very existence is proof that there is light at the end of the tunnel. In a perfect world, I could use a Star Trek Vulcan mind-meld to install my six decades of advocacy wisdom to that young family. Make no mistake, I have come across scores of other young people with disabilities over the years. And, during those brief encounters, I would pause to wonder what obstacles each individual had to overcome on their path. But, I never felt a burning need to strike up a conversation. This time was different because their collective aura felt like they were lost babes in the woods.
I was about to open my mouth and introduce myself. But, at the last second, I changed my mind and looked away. Because, as I alluded to earlier, when I was a young man, I wasn’t open to listening to older people period — let alone older people who were disabled. So, how could I be so vain to believe that they would be receptive to my two cents? So, I tried an indirect approach.
I always keep a copy of my first book, “Redefining Normal,” in my wheelchair’s backpack. I asked my traveling companion to withdraw the book and “accidentally” fumble it near the mom’s feet. Of course, it’s contrived but some situations call for inelegant solutions. After a little cajoling, my companion agreed to play along and strategically drop the book near the mom’s feet.
The mom bent down and scanned the front and back covers while picking it up. Before handing the book back to my companion, she read the synopsis on the back cover and smiled at me with a slack jaw. She introduced herself as Lynette and inquired if I was the author. When I answered in the affirmative, we had a concise and meaningful exchange. I told her that my mom ignored the grim prognosis for my life and relentlessly fought with school districts to ensure that they challenged me with a curriculum that was commensurate with my tested academic performance level.
Lynette said that she had waged similar battles for her son. She then introduced me to her son Jeremy who greeted me with a glow of happiness and a touch of mischief in his dancing eyes. Anyone meeting that sparkling little boy at that moment would’ve seen a child with a vibrant spirit. He reminded me of myself from long ago. Finally, as we went our separate ways, she tried to hand my book back. But, I told her to keep it and read it. I told her that I hoped the experiences of my academic life would provide a map of Jeremy’s future path.
As people with disabilities, we must never accept lazy assumptions cast upon us by others. Instead, we must perpetually strive toward our ultimate ability. Additionally, when we encounter a younger disabled person, we must at least try to pass the baton of experience in advocacy’s endless race towards equality.
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