My nephew just spent the week with us. From 7:00 AM until 9:00 PM, he played Phase Ten, Yahtzee, and ping pong, bounced on the trampoline, learned to dive, discovered our dog loves ice cubes and outlasted all five of us everyday.
In between practice dives, he explained how friction causes swimmers to work harder and eventually slow down. I couldn’t tell if he was earnestly seeking to explain the mechanics of swimming or offering condolence for my interminably slow freestyle.
At dinner that night, he made a card for his grandmother which he delivered with the stunning line, “I made this for you because I love you more than I love myself.”
When it was time to head to the airport, he said, “I will miss you for an entire year.”
Jack is six. Jack has Aspergers.
Since his diagnosis four years ago, my sister has openly shared her heartaches, frustrations, and triumphs. In the process of trying to support her, I have learned much and become acutely aware of our culture’s skittishness towards folks who have other abilities. For the most part, we are more likely to turn away or feign indifference. We pity the parents who are saddled with such a complicated life.
Amy Julia Becker in A Good and Perfect Gift describes a conversation she had with a friend regarding this: “I read a book recently that distinguished between pity and compassion. The author said that they can seem very similar but pity is when someone looks at your life and says, ‘I’m so sorry.’ And the way they say it involves a distancing mechanism, as if they’re holding up a hand to stop you from getting any closer.”
Until Jack became part of my family, I was that person holding up my hand. Trying desperately to be polite but simultaneously ambivalent as a means to prevent myself from feeling the grief that I imagined must accompany parenting such a child.
Spending the past seven days with Jack has caused a paradigm shift. I found myself wondering why he has a pejorative label affixed to him and I don’t. Yes, being in relationship with him does require heroic patience and a commitment to decipher his hyper-speed communication. I struggled to respect his need to not be hugged and felt exhausted by his indefatigable lifestyle.
But, he also laughs so hard he actually gasps for air. His innocence and deep trust of my sister and her husband allow him to be disarmingly honest, but never mean-spirited. A skill I could stand to grow in.
My nephew has profound insight into all things mathematical and scientific. I am convinced that he already understands more about quantum physics than I ever did – or ever will. He invents games (such as Hyperactive Six Year Old—his title—which had such complicated rules he always won. Hmmm.), makes radically insightful comments (“Why isn’t Eclipse gum black?”), and works his butt off to understand the unspoken and often random rules of social etiquette.
So why does our culture propagate the practice of avoiding and stigmatizing people like Jack who are both limited and inspiringly other? Why is it that we seal ourselves off, turn our heads, and dismiss individuals who have the wisdom to comprehend deep mysteries and the heart to feel things that are often inaccessible to a “normal” person?
Two thoughts. Americans tend to be both grief avoidant and obsessive about our image. Regarding the former, though I would agree that Jefferson’s rhetoric in the Declaration of Independence was exquisitely crafted, I think we do ourselves and everyone around us an injustice to believe that happiness is an inalienable right. When we chase this, if anything or anyone appears to be blocking our right to happiness, we can smugly justify our choice to treat them poorly. Individual happiness then takes precedence over more virtuous qualities such as maturity and the good of the community.
Our concern about image seems to run as deep as our desire for happiness. Degrees, status, perfect bodies, having influential friends all matter to most Americans. Anyone who thinks, speaks, acts, and – perhaps most significantly – looks “other” than mainstream folks, is viewed as an obstacle to that goal. On a more subterranean level, they serve as unwelcome reminders of our limitations and powerlessness. And for this offense, we are quick to label and marginalize them, preferring distance to engagement.
Writing about her daughter who has Down’s Syndrome, Becker continues:
“I realized that I had always assumed it was very sad to have a child with mental retardation, or for that matter to be a person with mental retardation. But why? Why was that sad – because our culture held the intellect in such high regard? Because life was only as valuable as what we could produce or what academic degrees we had attained or how attractive we were or how big our house was? What was sad about having a child with Down’s syndrome? In a Nietzchean universe, her existence was a tragedy, plain and simple – an accident, an abnormality, biology “gone wrong.” But in a God-created universe, what was good and not good in her? And was it any different from that which was good and not good in the rest of us?”
Indeed.
My sister and her husband, along with millions of other parents across the globe, face challenges that those of us with children unaffected by genetic or developmental disorders will never fully grasp. But I also believe that children like Jack give their parents, and all of us who are willing to receive, a unique and profound gift – the bold willingness to embrace the actual life we have rather than striving to be someone we are not. Thank you Jack. I am forever indebted.
(You can read more about my sister’s life with Jack at http://janehuber.blogspot.com/)