Disability Awareness Month: The Story I Want You to Remember

As the gym echoed with 200+ fourth graders collecting their thoughts to begin the question/answer time following a blindness/guide dog presentation I had just concluded, I heard the principal call upon the first questioner. A computerized voice rang out to my right, not asking a question but thanking me for coming and complimenting me for the message I had shared. My heart jumped into my throat as I realized that the child communicating the question through a talking computer was nonverbal and likely had severe disabilities. I had not known that this child was in my audience, but his compliment moved me deeply as it apparently did the larger audience too, given the stillness that settled in among the previously animated nine and ten-year-olds.

Right afterward, the voice of an adult woman inserted itself, telling me that the boy with the computer also had a question. I sat silently, stroking Nacho's forehead and waiting to hear what the child would ask.

Then it happened. I crashed into one of the moments I will never ever forget in this year of service as 2015 Indiana Teacher of the Year. While most of these breathtaking moments had tended to come up with no notice, this one leapt above all others in prominence and profundity. Maybe because of the computerized voice, maybe because I didn't know a special needs child had been listening to me speak, maybe because this was in my old hometown and was thus already emotionally charged, maybe because March is Disability Awareness Month. Whatever the reasons, I can relive each second of what unfolded as if it were happening right now, again and again.

The nonverbal boy, voicing his inquiry through a robotic speech synthesizer, asked me, "Does it ever get so difficult that you want to give up?"

With tears choking my voice and flooding my eyes, the room emptied to only me and this little boy: not literally, but in every other way that matters. I knew his question arose from a place of struggle, isolation, frustration, sorrow, loneliness, dreaming, immense effort, longing to do things without having to employ such immense effort every single time, friendlessness, wishes, hopes, devastation, unspoken guilt for what his loved ones had to face that they never anticipated, desire to be just like everyone else for once, exhaustion for having to work twice as hard to do even the simplest things and sometimes not even getting close to succeeding. I knew all of this, because in spite of my blessed life that often seems kissed by unwarranted stardust and sparkles, I too carry those very same pervasive realities.

As I stumbled through my tears to answer him, I was aware of an incredible internal pressure squeezing out my words. This little boy did not need to hear a glib, "Yes, but you can do anything you set your mind to doing," or "Sure, but keep up the fight," or "of course, but it always works out." The common word that I was determined to leave out of my answer? "But." That little conjunction for this little boy would minimize his journey. I needed not to be the fixer in this conversation...I needed to be the fellow-traveler. I needed to realize that sometimes, "I understand" is what is needed, not a solution or a formulaic dismissal of his heart's honest cry.

It doesn't matter what I said to him. It doesn't matter what pieces of his story I put together later when talking to school personnel about the moment. It doesn't matter whether his family ever contacts me after they receive the business card I left with the principal for them. What matters is this. During March of 2016, Disability Awareness Month, I was brought face-to-face with a child whose life will never be easy. He in his courage forced me to remember that my own life has not been easy. The stories of so many are not easy...whose story is? I refuse, however, to dishonor his story and my story and the other stories of those with disabilities by cleaning up the jagged edges of our stories with a litany of "but" "but" "but." Absolutely, I refuse to wallow in that jagged debris, just like that little boy isn't wallowing, but he in his innocence and youth and transparency is the one who had the courage to touch those sharp edges and say to me in front of hundreds of peers, "Sometimes it hurts, doesn't it?"

Yes, little boy with the computerized voice. Sometimes it hurts. And (not "but") you did more for Disability Awareness Month in that one honest question than you can ever imagine. "I understand," and I thank you for understanding my story too. May our understanding walk both of us forward, a bit further away from those jagged edges, perhaps side-by-side, hand-in-hand.