Why

A personal piece giving voice to the "dis"abled community.

On February 26, 1987, President Ronald Reagan officially declared Proclamation 5613, making March National Disabilities Awareness Month. The proclamation called for people to provide understanding, encouragement, and opportunities to help persons with disabilities lead productive and fulfilling lives. Normally I would wait until the month of March to share my story behind the importance of Disability Awareness, but it’s February, and well, why not??

Growing up, my family and I never focused on March being a month of National Disability Awareness. I think this is mainly because we lived it day in and day out with my brother, Christopher. Chris has Trisomy 21, more commonly known as Down Syndrome. Trisomy 21 is a genetic condition caused when extra genetic material forms at chromosome 21. Trisomy 21 is the most common chromosomal anomaly in humans, affecting about 5,000 babies born each year and more than 350,000 people in the United States.

Chris is the oldest of four of us children, and I, the youngest. As a child, I knew he was different, but at the same time, I didn’t know anything different. Chris was still my oldest brother. We wrestled, argued, played, snuggled, and laughed. Nothing seemed much out of the ordinary. Chris’ normalcy is what was instilled into my siblings and me. It was not until I became a witness to how he fit into the world that I understood the differences more acutely.?

Although Chris went to public school, our Mom went out of her way to ensure that he was in the best program in our area. He didn’t go to the same school as my siblings and me, and he was in a special needs program with other students with both mental and physical disabilities. Truth be told, I would likely come to tears sharing stories –— both witnessed and heard about — of Chris’ experiences of bullying, wrongful blame, inequality, and just sheer ignorance and hate in his school years. Instead, I will share this:

Keep in mind that Chris is 10 years older, so I am 16 in my story. It was a warm summer day. I wore a green ribbed tank top, tan cuffed shorts, black sunglasses and flip flops. I had just gotten my driver's license a few days before and went to pick up my new-to-me car with my parents. With our unspeakable bond, and as soon as I got home, I ushered Chris to be my first passenger. We packed in and went for a cruise, music blaring and windows down. He was grinning and laughing, mainly at me cutting up and singing off key. After a few minutes on the road, Chris decided to inspect the car for himself, just as any big brother would do. He looked in the back seat, checked out the console, made fun of the headliner that dropped down to the tops of our heads, and then pulled down his sun visor. Chris saw the mirror on the back of the visor and stared for a bit.?

He then asked, “Why do I look different?”?I thought I heard him incorrectly, so I turned off the music and inquired, “Huh?”?Chris repeated, “Why do I look different?”

My heart felt like it had stopped, and the world around me became still. Before I could even think about a response, I burst into tears. It had never occurred to me that Chris had noticed his difference in the world, let alone had the ability and desire to discuss it.?Chris then expanded in the deafening silence, “Why can you drive, but I can’t!?!”

As I covered my eyes with my sunglasses so that Chris wouldn’t see my emotional response, I reached my hand over and patted his lap. I remember mustering up the best response I could, "You're just special. No one could ever be like you, Bubba.”

Though Chris’ curiosity had rocked me to the core, my answer sufficed, and he closed the visor and went about inspecting the vehicle. After that, our car ride had a different undertone. One of solemn and unspoken appreciation. When we arrived home, I gave Chris a big hug knowing that he had opened my eyes to something of which I was naively unaware, but still needed time to digest. Chris could physically see that he looked different than others. He was noticing my abilities (along with those of our other siblings) to achieve milestones and do things that he had not been able to experience. I never knew he felt and noticed the differences.

To this day, I am brought to tears as I recall this real-life experience as if it were yesterday. The tears spurred by sadness and frustration, then quickly polarized by inspiration and hope. A reality that societal beliefs and infrastructures have historically segregated individuals born with disabilities, focusing on what makes them different and unable to be a functioning part of our communities. This referenceable archive is saddening and frustrating. The good news though, is that the paradigm is shifting. As individuals question the meaning of normal, we can begin to look at what unites us, versus what divides us. This instills inspiration and hope that Chris, and others like him, will know a future of enablement, instead of disablement.?

In his ability, Chris does not always complete sentences, nor does he cognitively connect topics in communications with others with great ease. However, Chris’ abilities are his superpower, and perhaps more profound than he has ever received credit for. He is a role model of gentleness, patience, authenticity and mindfulness. Even in his most vulnerable moments, Chris allows himself to feel his way through his emotions, never putting on a mask to hide who he is at his core. He demonstrates unconditional love and pure joy, by simply being himself. His imitation of Thelma Harper from Mama’s Family, and karaoke serenades of Deana Carter’s Strawberry Wine and Aaron Tippin’s Kiss This, can light up the darkest room. Chris' ability to teach by influence and example are qualities in which so many strive to attain or achieve in even the tiniest fraction within their lifetime. Though Chris and others traditionally defined as disabled may communicate differently, their voice is one of meaningful action and great power.

Speaking of voice, Chris has, and will always have a favorite word. Actually, his word, as evidenced above, is more of a question.

“Why?”?

In fact, his favorite question followed me into my college years as I sat for my philosophy final exam. I studied long and hard for the exam, anticipating an excruciating regurgitation of the philosophies, theories and principles we had studied at length over the semester. The day of the exam my professor wrote Chris’ word in all-caps on the white board in front of the classroom.?

WHY?

Little did my professor know the love/hate relationship I had with this word. Growing up Chris was always curious about everything and would ask “Why?”on a daily basis. I could say, “The sky is blue today,” or “That horse is huge," and Chris’ response was always the same. Interestingly it was not until the very moment that someone other than Chris asked me this one word question that I finally figured out the only acceptable answer. It had taken me nearly 18 years to calculate the best response to the very question I had been asked almost daily since the day I can remember.??

The answer to my exam and to Chris’ famous question is the same one I will leave you, reader, with today as you:

• Think on inclusivity integrations for disability (and all others) in your own communities
• Reflect on what saving Humanity, and with it Earth really means
• Explore the importance of change in our current nucleus
• Identify your personal voice
• Ask yourself, Why??

The answer is….

By: Casey Edmonds