Monday, November 26, 2012

To a Parent in a Parking Lot

Meg Evans
megevans.com

I met you last weekend when I was leaving a crowded shopping center. Your son, who might have been about ten years old, suddenly did a cartwheel in front of me while I was walking to my car. You took hold of your son’s hand and then glanced toward me and apologized by saying, “He’s retarded, sorry.”

I didn’t say anything to you before you went on your way. No doubt your attention was focused on keeping your son safe, and rightly so. You wouldn’t have wanted a nosy stranger to lecture you on how your son might feel about your choice of words. Indeed, you probably believed that your apology was the best way to protect your son’s feelings, by letting me know that there was a reason for his behavior. I’m sure there must have been many times when ignorant, judgmental people yelled at your son and got him upset. You’re quite right that your son doesn’t deserve to be abused like that by strangers, and I understand that you were trying to help him by making sure I didn’t jump to conclusions about him.

One little sentence -- just three words. It’s easier than getting into a long conversation about the details of your son’s diagnosis. Maybe you feel that random people in a parking lot have no right to expect you to share personal information. As to that, I don’t disagree. Besides, you wouldn’t have had time to get into a conversation about it, even if you wanted to, because you were so busy making sure your son didn’t get run over. I understand that, too.

Your son didn’t look bothered by the language you used to describe him. Maybe you think it’s harmless because he doesn’t understand what it means. Or you’ve decided that even if he understands, it’s what our society is going to call him anyway, so he may as well get used to it. Why sugar-coat the inevitable? If you use the word in everyday conversation, then it may lose its sting and become just another part of the background of your son’s life. To the extent that your assumptions about what your son can expect from our society may be correct, I can’t fault your logic.

And that, I believe, is the crux of the controversy we have seen about neurodiversity in recent years.  It’s not that anyone vehemently objects on principle to the idea of social equality and respect for their children and for others who have developmental disabilities. Rather, it’s that many parents simply can’t fathom how our society could ever get there from here.

If I had said anything to you, in that parking lot, about the possibility that your language might harm your son’s self-esteem and his potential for future accomplishment, you’d probably have told me that I was both rude and clueless. After all, you’ve been working as hard as you can, all these years, to keep your son safe from harm and to teach him the daily living skills he’ll need as an adult in a group home. Nobody has done more for your son than you have, fighting with school officials and insurance company bureaucrats to get whatever scraps of services are available. So far, those services don’t come close to what your son would need to hold a job and live independently. You can’t foresee that situation ever changing for the better. In the wake of the Great Recession, you’re just grateful that there is still a roof over your family’s heads and food on the table.

I didn’t write this article with the expectation of changing your views. Realistically, there is very little chance you might read it. And even if you did, I suppose you’d just tell me to quit being the language police, when you have more serious things to worry about. I’m not inclined to dispute that point, in light of all the struggle and stress faced by today’s families. So I’ll ask no more of you than that, if you should happen to come across this article, I hope you’ll take it as it’s intended -- not as a criticism of your approach to raising your son, but as a respectful observation that our world sometimes changes in ways not foreseen.

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I have always believed in the power of stories to shape the future.  In that spirit, I’ve composed a vignette describing another parking lot encounter, which takes place in the year 2025. This time it’s a little girl at the shopping center with her mother. Nine years old, with a freckled face and long blonde pigtails, she smiles often but can speak only a few words. She dearly loves both gymnastics and playing outdoors. It’s a beautiful sunny afternoon, with a cool breeze blowing and a few tiny puffy clouds dancing across the brilliant autumn sky. Overcome by the keen joy of the moment, the little girl spontaneously does a handspring right there in the parking lot. She doesn’t notice how close she comes to colliding with a passing shopper, a middle-aged lady who blinks in surprise behind her bifocals.

The child’s mother takes her hand and is about to apologize. Before Mom has time to say anything, however, the lady smiles at the little girl and compliments her for doing such a good handspring.  Then she turns to the mother and says, “What a lovely daughter you have!”

Mom says thank you for the kind words and continues walking to her car with her daughter. Once safely buckled in, the little girl starts typing busily away on a tablet that has a text-to-speech app installed. Her spelling and vocabulary are still very much a work in progress, and often she gets a word wrong; but today has been such a good day that she doesn’t feel frustrated because of it.

All the way home, the back seat overflows with happy, electronically-generated chatter. As best Mom can figure it out, it’s about gymnastics, and the cute puppy in the pet shop window, and gymnastics, and the nice lady in the parking lot, and gymnastics, and last week’s field trip to the nature preserve -- and of course, gymnastics. Mom responds with an occasional “Wow!” and “That’s great!” when she can get a word in.

Truth be told, Mom isn’t paying as much attention as her daughter believes she is. Her thoughts are still on a news article she read earlier that day. For the first time since records have been kept, most adults with developmental disabilities have jobs and are living independently. The government official who was interviewed for the article gave many reasons -- advances in assistive technology, improved educational methods and therapies, better availability of health care, expanded community services and supports, a booming economy with many new jobs to fill, and diversity programs aimed at countering prejudice and hiring more workers with disabilities.  But above all, the official said, it was because our society finally found the collective will to do what was needed.

She has been quiet too long, her thoughts filled with the myriad possibilities that the future may hold. Her daughter just turned up the volume on the tablet (having discovered the uses of that feature last month) and “MOM!” blares from the back seat.

“Yes, I’m listening,” she says. The light changes to green, and she accelerates away from the intersection. Tall maple trees on both sides of the boulevard are ablaze with late-fall colors. Some of the trees have dropped almost all of their leaves; these stand in clear silhouette against a backdrop of pure blue sky, with the shape of every branch and twig revealed.

She speaks again, as much to herself as to her daughter.  “The world is listening too.”