As the mother of an 8-year old with Down syndrome, I sometimes get annoyed by headlines trumpeting the everyday accomplishments of kids with intellectual disabilities. Heart warming stories of the teenager with Down syndrome who shot a three-pointer for the basketball team, or ran the field for a touchdown, or was voted Homecoming King or Queen sometimes feel like distractions from the prejudice people with intellectual disabilities face in our schools and in our society at large. Moreover, for every child who receives the applause of friends and family (and the wider world of the internet), countless others do not achieve something that commends praise. I want to uphold the intrinsic value of all the kids with intellectual disabilities, especially the ones who don’t make the headlines.
Yet I found myself cheering for Hema Ramaswamy, a 23-year old woman with Down syndrome who recently performed her coming-of-age ceremony, which involved two hours of dancing and nearly a decade of practice.
And I couldn’t help but swell with pride and a bit of wonder when our own daughter, Penny, competed in her school’s spelling bee last week.
I probably shouldn’t have been surprised to learn that Penny was one of four kids from her third grade class to advance to the all-school spelling bee. Penny has always loved words. As a preschooler in speech therapy, she would ask us to give her big words to say out loud. I remember her little voice repeating back to me words like onomatopoeia, ridiculous, symphony, brontosaurus, ontological. Then, once she could read, it became our habit during long car rides — the twice annual visits to the ear doctor, the eye doctor, the physiatrist — to give each other words to spell. Easy words came first — bed, hat, tin, cap. And then “medium words” like mailbox, evergreen, point, basket. Finally, “medium-hard” words that kept us giggling with the complicated letters she would mix up from the back seat: hospital, telephone, beautiful.
Still, when she buried her face in my lap with the thrilling news that she would be in the school spelling bee, I almost cried with surprise and pride and excitement for her. She practiced every night. Say the word, spell the word, say the word. Think about it first. Say it slowly. Have fun. She lay on the couch with the list of practice words. Peculiar, fluoroscope, forewarn, generous.
Ten kids lined up in their chairs in the front of the auditorium. Penny, legs dangling, smaller than anyone else, sat up straight with a big smile. She spotted me and waved. The first round consisted of three words. She spelled the first one wrong: rarely, with two l’s. She spelled the second one wrong: surprise, without the second r. But she got her final word right. She marched with confidence to the microphone. She said the word, spelled the word, said the word. Possible. P-O-S-S-I-B-L-E. Possible.
Penny sat down in the audience after that round along with three of her peers, and she cheered for the kids who advanced to the second round and then to the final. As I thought about her accomplishment and the excitement of watching her up there, I realized that at least part of the reason I cheered a little louder for her (other than being her mom, of course) was because I knew it took even more work for her to get there than the other kids. It took more hours of paging through books and practicing words out loud and reading and reading and reading.
I once had a doctor friend explain what it means for Penny to have low muscle tone. “Her body’s resting state is looser than other kids,” he said. “It’s kind of like if you have a Ferrari and a Honda next to each other. They are both perfectly good cars. They can both get to 60 and drive you to your destination. But the Honda is going to have to work a lot harder, and it will probably take longer, to get there.” His words ring true not just for Penny’s body but also for her brain. It takes longer. It takes more practice. But she can get there.
The same is true for Hema Ramaswamy. For Karen Gaffney when she swims across Lake Tahoe. For Emmanuel Bishop when he plays the violin. And so I cheer in recognition not only of their musical or athletic ability, but also of the work it took for them to get there.
I still worry that in writing about these accomplishments I will contribute to a perception that human beings have little value unless they can perform or achieve something measurable. But I also don’t want to give credence to the thought that individuals with intellectual disabilities should be categorically dismissed from activities like basketball games and spelling bees. Perhaps these visible reminders of the capabilities inherent in people with intellectual disabilities will help others look for the more subtle gifts present in every individual we encounter, including those who will never stand on stage in a school auditorium.
Because here’s the thing. Nearly nine years ago a doctor offered us a grim pronouncement of developmental delays and mental retardation. And last week, our daughter spelled possible.