The phone rings late one afternoon as I am chopping salad. Cordless receiver wedged between my shoulder and my ear, I line up a row of cherry tomatoes on the cutting board.
"Hi, my son Jeremy is a volunteer in your sports program," a woman who identifies herself as "Jeremy's mom," says. "I'm going to need you to write something up for him for the awards ceremony next month."
"Hmm-hmm," I say.
"I need a report describing your program, discussing what my son has contributed, and what kind of growth you've seen in him. And also, what he's learned from working with those kids," she says.
Those kids.
"I'm sorry, what did you say your son's name is?" I say, starting a slow seethe.
"Jeremy."
Who is Jeremy? I honestly don't remember him. We have so many volunteers, all trying to fulfill their school's community service requirements by volunteering at the Alternative Sports League. It's a weekend program for children with disabilities that my husband Marc, a friend, and I started in our community several years ago.
But as usual I am polite. "Sure, happy to," I say, savagely chopping the tomatoes, thinking, if it's your kid's community service, why isn't he calling me himself? Why isn't he writing his own report?
"Oh, just one more thing. Could you have it for me before Friday? I can pick it up, just leave it in your mailbox. I know it's short notice, but I'm a little overwhelmed, I'm taking my daughter to Canyon Ranch this weekend," Jeremy's mom says, and laughs. Is she trying to draw me in? Sound apologetic?
"You know how it is," she says.
No. Actually, I don't.
"No problem," I say, and hang up. I whack at a pile of carrots, thinking, so you're stressed having to make your kid rack up his community service hours to pad his college application packet? Let me save you the trouble. I'll just give him a tee shirt that says, "Look, I'm selfless and wonderful: I volunteer with autistic children."
Our sports program gets a lot of traction from the middle schoolers in the neighborhood. It's become customary for children going through a bar mitzvah or church confirmation to do a service project - collecting clothing or canned goods for charity. Then some parents cottoned to the fact that their sports-loving kid could get more mileage out of our program. The problem is that once the confirmation, bar mitzvah, or Boy Scout project is over, so is the kid's commitment. Most of them never show up again. What can their parents be telling them?
One Saturday morning last year, Marc and I sat in the synagogue listening to a boy we know from our town deliver his bar mitzvah speech. "For my mitzvah project I'm so proud of all the work I did for the Alternative League," he said. "I'm really good at sports, so I was able to share all my skills with those kids."
There it is again. Those kids.
"I hope I helped their lives in some way," he added.
Marc leaned in. "Did he come to any of our games?" he whispered.
"I saw him there once. Maybe twice?" I whispered back.
Here's what particularly galled me: this kid, all self-congratulatory smiles, actually lives in our neighborhood. He's close in age to our son Mickey. But in all these years, this boy has never - - not once - rung the doorbell to ask if my son wants to come out and play. It reminds me of that old "Peanuts" poster, a cartoon of Lucy Van Pelt with a bubble over her head that says, "I love Mankind. It's people I can't stand." I've seen how this boy's sister looks the other way when my son walks by. Like so many of the children in town, they simply ignore my child. In six years of elementary school, my son was never invited to one birthday party. All through middle school I would see kids in the neighborhood walking to and from school together; not once did any of them ask my son to walk with them. Yet Mickey always glows with delight when he sees them. "Hi Lindsay! Hi Shawn! Hi Kelsey!" he sings out happily. He gives his heart so freely. It makes me wince. He thinks these kids are his friends. Sometimes they mumble back, then look away. I can see he makes them uncomfortable.
The irony hurts. All these kids are accumulating community service brownie points to impress the colleges, while my child isn't ever going to go to college at all. I'm jealous. How could I not be? I don't mean to begrudge other parents their good fortune. It's just that there is so much that Mickey will never be able to do, things which those other families take for granted. He's not going to get a license to drive. He's not going to the prom. When Marc and I want to go to a movie, we still have to hire a babysitter, even though our "baby" is 17 years old.
"We're studying disability for English class," an eighth grader told me one morning this past winter. She was big-eyed and bubbly, and had just shown up at the sports league toting a video camera. "I want to show how caring this community is!"
"You'll have to get permission from the parents before you tape anyone," I said.
"How did you feel when your child was diagnosed with autism?" she asked. "Can I interview you? We're learning about tolerance."
The dictionary defines tolerance as "the act of enduring." Can this really be what the teacher had in mind?
I don't want you to tolerate my child, I thought. I want you to accept him.
My friend Susan, the parent of a child with a disability, tells me that last year some boy on her block who had an assignment for his church's confirmation class asked to "borrow" her son Jacob. They played basketball in the driveway for ten minutes, till the boy's mother came running to document the event with her digital camera. Susan showed less forbearance than I. "I'm sorry," she said, stepping firmly between Jacob and the camera. "I feel very uncomfortable with you photographing him. My son isn't a project. He's a person."
Recently a reporter and a cameraman from the New York Times showed up at our middle school. Among other things, they wanted to report on a newly launched club that invited mainstream students to share snacks and board games after school with a class of autistic students. It was a front page story, and it began: "The privileged teenagers at Scarsdale Middle School are learning to be nicer this year, whether they like it or not."
Can one really teach empathy? I'm not sure. What I am sure of is this: I'm tired of other parents who expect me to go all soft-eyed and grateful because their kids spend one hour a week on a soccer field kicking a ball around with my son. My child isn't a mascot. He isn't a charity case. He isn't a community project. He's a kind-hearted, teen-age boy who enjoys having friends. And he happens to have autism.
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Unfortunately, the qaulity of life statistics of young adults with autism are quite bleak. Little research is done in this area, but the little bit of info that is available shows that the majority of people with autism do not have meaninful employment, do not live independently and do not have significant social relationships. Would more empathy for these individuals help? I don't know, but feeling accepted in society is something all people desire and deserve.
I force myself to say, "My son HAS autism", rather than "My son IS autistic." A small semantic difference, and yet all the difference in the world.
Thank you so much for your words.
Sincerely,
tmac01
It seems that parents need to do a better job of teaching tolerance. The best way to teach this, of course, is by example.
The number one complaint of people with developmental disabilities is loneliness -- not disability.