An Illumination On DD Awareness Day
Monday, May 31st, 2010I’d forgotten, when I’d arrived at the airport in Buffalo earlier that afternoon, that the event I’d be attending the next day was located less than an hour from one of the great natural wonders of the world. I’d been focused instead on my upcoming responsibilities at the twenty-second annual Developmental Disabilities Awareness Day, a hugely successful conference in western New York state. As the author of a memoir about life with my sister, Riding The Bus With My Sister, I’d been invited to give the keynote address, then run a workshop and sign books. I’ve done many such events, but as every person is unique, so is every conference. For one thing, DD Day, as it’s known, regularly attracts about 1,500 people, a more sizable crowd than I usually address. For another, the participants include so many adults with special needs, they might well outnumber the professionals, family members, and children with disabilities in attendance. I rarely see that kind of proportion, and for the whole flight to Buffalo, I was excited.
Certainly I know many adults with disabilities, from my sister Beth and her boyfriend Jesse to many individuals I have met when I speak. But I never cease to be amazed at how common it is for people who aren’t in the disability community to think that “person with a disability” equals “child with a disability.” The idea that the child will become an adult doesn’t seem to occur to them. Their thoughts, like special ed, seem to stop at age twenty-one.
My new friend Linda was on the committee that organized DD Day, and after she got me at the airport, then took me out to have dinner with others from the committee, she asked if I wanted to see Niagara Falls. I’d been there one night thirty years ago, but with out-of-towners like me, and we hadn’t remotely understood what we were seeing. Linda had grown up in this world, so when she offered to be my guide, I said yes.
In the dark, she continued to lead me down the pathway toward the Niagara River. I could see the rapids now, careening toward what she explained were the Horseshoe Falls, and although they were not yet visible from where we stood, and were better viewed from the Canadian side anyway, I understood that their massive power was the source of the mist. We wove through patches of tourists, listening to the screeching of frenzied gulls circling above the water, smelling fish.
We reached the railing. The river was only a few feet beneath where we stood, and in the dark, under a full moon, it coursed black and ghostly and faster than any river I’d ever seen. I could make out the horizon where it began, but had no way of gauging its depth. If Linda hadn’t been with me, explaining the geography before my eyes, I’d have thought that the ledge to our right was not the drop-off point for one of the most majestic sights a person might ever see, but the end of the earth.
A few years ago, I gave a talk for an agency in Erie, PA that provides specialized residential care for adults with developmental disabilities who might also be medically fragile. I met several adults in their group home, and was impressed at how full of life each was, with habits that made them happy and games they enjoyed playing and chairs they loved to sit in. When I came home, bursting with pleasure about this agency and these individuals, I told a colleague at the college where I was teaching about where I’d just been. He listened distractedly, then made a correction. “You mean children,” he said. “No,” I said. “They’re adults.” His face went blank. I said, “When children with special needs get older, they still need services.” His face stayed blank, and as I backed away from the conversation, I thought, Could he really not understand that children with disabilities grow up—into adults with disabilities?
When I encounter this attitude, I try to be sympathetic. I know that, despite the growing presence of adults with disabilities in the workforce, on television, and in the community, many people still think that “special needs” equals “children.” I also know this can be as true for people like my colleague as for young parents whose child has just gotten a diagnosis they never imagined they’d hear. I meet these parents a lot. They’ve just been thrown into a world that’s unknown to them. It looks dark, foreboding, and overwhelming. Where are they going? they ask themselves. How will they find their way? What could it possibly look like when they get there?
Beside the Niagara River, under the full moon, Linda continued to guide me along the railing. The Canadian side, she told me, bathed the Horseshoe Falls with colored lights, but all I could see as we moved was the mist. It so fully engulfed the Falls that we walked for many yards before we could see anything again. Then it was the river, now hundreds of feet below, and far downstream, the other falls for which this landmark is renowned. The American Falls were easier to see, but too far away to admire.“I wish I could see all of this better,” I told Linda as we made our way back to her car.
“You’ll just have to come back in the daytime,” she said.
It sounded good, but how was I to do that? The next day was devoted to the conference, and my flight home was set for the following morning.
I forgot about Niagara Falls as soon as I went to bed. It did return briefly to my thoughts when I woke up, dressed for my talk, and made my way to the conference center. But as soon as I was enveloped by the crowd, I forgot even that I was in New York state. Instead, I was in a world that transcended all the boundaries, including ethnicity, class, and age. This is one of the great truths of disability: it can happen to any person, in any family, at any time. None of us is so special that we might never have special needs.
Some people, like, perhaps my old colleague, or parents newly entering the disability world, might find that truth frightening. As a sibling, I find it comforting. Yes, it means everyone is vulnerable. But it also means the human race has fewer divisions than we sometimes think. So friends, guides, even role models might already be around us, if we allow ourselves to see.
Then I was swept up in the day. I shook hands with dozens of adults with disabilities, many of whom were involved in the self-advocacy movement. I got on the stage and did my talk, looking out into a room of all ethnicities, classes, and ages. I gave a workshop, and attended others. I stood at the book signing table and hugged parents, siblings, professionals—and individuals with disabilities.And here’s what I saw as the day progressed, all of it with people who had once been children with disabilities and grown to become adults.
If only every young parent could be here, I thought, as the day wore on. The fear would start to recede. The darkness would lift.
“So,” Linda said as the conference drew to a close, “do you want to go back to the Falls?”
We had just shuttled another speaker—a media advocate who’s the mother of a Hollywood actor with Down Syndrome—to the airport, and I was ready to get back to the hotel and collapse. But the sun was still up. And if I didn’t take this opportunity now, I might not get the chance again.
So for the second time in twenty-four hours, I stepped out of Linda’s car at Niagara Falls. The river was still a roar, and the falls were still a force. But now I could see that the water wasn’t very deep. I could see infra-structure I hadn’t noticed. I could see that Linda had become someone I trusted. Together we moved along the path toward the American Falls, until they were not too far away to admire.
“I wish everyone I know could see this,” I said. Then we looked out to the water and put our arms around each other, and I saw so much that I hadn’t known to see.

Many thanks to the committee who invited me to DD Day, which includes, left to right, Linda Szmanda and Kim Palermo of Community Services for the Developmentally Disabled, and Wendy McCarthy of DDAWNY

Thank you, Dawn Everett and Joanie Kerr, from Barnes & Noble in Amherst, NY, for running my book signing







































