The following is excerpt from an essay that appears in the just-published anthology, My Baby Rides the Short Bus. I chose to publish it anonymously so as not to name the organization I write about here. It’s a great organization that does good and important work, and I do not mean to imply otherwise, nor did I write this to trash them. Rather, I wrote it to illuminate the experience of feeling isolated when one is less conventional than the people one might find oneself among as a result of particular life circumstances–the overall theme of the anthology. The book just arrived in my mailbox, and it’s extremely wonderful–buy it.
It was my first Doozy Conference.
Oops—I guess I’d better back up and provide a little background.
My son David, now forty-two, was born with a neurological condition requiring brain surgery—the first when he was ten days old, and several more times since. Surgical scar tissue led to intermittent grand mal seizures that began when he was eight. He also had learning disabilities that were diagnosed as laziness until 1975, when the public school system discovered disability–by which time David was two years from graduation.
Doozy is the private word we used when my kids were little to refer to David’s condition. I invented it when I realized that David’s younger sister Sara was having a hard time talking about his condition, especially when other people, upon learning of it, reacted with alarm. Whenever I referred to “David’s Doozy,” the kids cracked up, releasing some of the tension and fear that surrounded his condition.
I’m resurrecting the term now so I can write about the Doozy Association without (a) publicly trashing an organization that does a lot of good work, and (b) insulting or injuring the individual people who do that good work. After much thought, I decided that the only way for me to be honest about my experience with the Doozy Association is to render it (I hope) unrecognizable. For the same reason I’m writing anonymously, and all names have been changed, including those of my children.
So—to get back to my first Doozy Conference. David was already a man in his early 20s when I discovered the Association, after moving from the East Coast to the West. Although Doozy had been treated surgically for some fifty years, there were precious few resources for those who had it. Back East a small group had formed around one of the doctors specializing in Doozy; they sponsored events to raise research money, but that was the extent of their activities. There were no support or educational groups, and until I came West I hadn’t known anyone with Doozy, except for two families I hunted down and met briefly when David was a baby. There was then no Internet in those days where one might find hundreds of others in the same situation. Few people even knew what Doozy was, and so I’d bumbled around, confused and ignorant through the years of David’s childhood. If someone had asked me what kind of help or information I needed, I never could have imagined the resources available for people with disabilities today. Isolation, confusion and fear were par for the Doozy course. This was just the way life with Doozy—or any disability– was back then. I’m talking 1965- 80s, a time when people didn’t speak openly about a lot of topics, and about disability not at all. There was no such thing as early childhood intervention, the Americans with Disabilities Act, the IDEA and IEP. Accommodations for special needs were not only non-existent, but the words hadn’t even been used together yet. People with disabilities were usually referred to as handicapped, retarded or crippled. David’s doozy was known as a birth defect. Who can be blamed for not wanting to engage in conversations about defective babies?
The Disability Rights Movement had its early origins in the 60s, but it wasn’t until the 80s that parents of children with disabilities banded together to demand and implement change. By then David was nearly an adult; in his last two years of high school he received special ed—which at that time meant putting him in a classroom for one period a day with kids who covered a wide spectrum, from dyslexia to cerebral palsy and everything in between. It wasn’t much help, especially since David carried some pretty heavy baggage after 12 years of dysfunctional education. He was born too soon, and the Disability Rights Movement came along too late, for him to benefit, at least educationally. Thus, the discovery of a group that advocated for people with Doozy was a major thrill for us. Our whole family—David, his sister Sara and I–had dinner with the founders of the organization. We were tremendously excited about going to our first conference.
After registering at the hotel and settling in, my kids and I went down to the welcoming reception. Buffet tables were set up in a large ballroom. Adults and kids milled about nibbling on cheese and crackers. They were expecting about 200 people to attend; today, with attendance averaging 500, that earlier number looks puny, but it was the most registrants they’d ever had. The Association was over ten years old, but it was still quite small and locally centered, overseen primarily by its two founding families. I’d been impressed with their professionalism, as well as the quality of their newsletter and other printed materials, and the connections they’d managed to make with doctors and specialists in the Doozy network.
I entered the ballroom and got a glass of wine. The Executive Director spotted me and came over. She was a masterful hostess who knew how to make things happen. After a few minutes of chatting she introduced me to someone else, and once the conversation took off she slipped away. I liked how she watched out for me: any time she saw me standing alone and lost, she’d come back and drag me over to another new person, always staying long enough to start the conversational ball rolling. In this way I managed to meet a fair number of people whose lives had been touched by Doozy in one way or another.
Most of the parents were younger than I, and most of their kids who had Doozy were infants and toddlers. Because Doozy treatment was relatively new, only a small contingent of people David’s age were at the conference—or on this earth. Until around 1955, babies born with Doozy either got over it naturally, or died. It turned out that David, born in 1965, was a Doozy pioneer.
And I was a pioneer Doozy mother, something I’d learned at my first meeting. When I told my story to a dozen parents, they were in awe, and told me I was remarkable for having survived Doozy almost entirely alone. At first this surprised me: all these years I’d thought of myself more as victim than as remarkable or pioneering. Nor had I seen the big picture—the historical, social and cultural influences surrounding my circumstances. As reality sank in, my sense of myself as a mother began to shift. Where I’d previously been ashamed and embarrassed to talk about Doozy, I slowly developed a matter-of-fact attitude tinged with pride. This transformtion didn’t happen in a day, but over the course of several years. The way I talk about Doozy now is light years away from my halting attempts as a young mother. Insensitive remarks that once hurt now rouse me to anger and contempt for those who make them.
Midway through the reception, after I’d had two glasses of wine and enough time to calm down, I took a look around at the people with whom I’d be interacting for the next two days. The shock of what I saw hit me all at once: every single person in the room was white, and apparently middle-class. Though this was a superficial glimpse, the vibe was unmistakable. Almost everyone was from a background I knew well, one that I’d pejoratively labeled “straight” after walking out of my suburban home back in 1969 wearing a tie-dyed t-shirt and jeans, my two little munchkins in tow. For awhile we lived on a commune made up of single mothers and kids. The next year we lived on a mountain dotted with teepees where we worked a communal garden. I went out with men and women of all ethnicities from all walks of life. The kids learned origami, guitar, and Grateful Dead lyrics from the friends and lovers who passed through our home, sometimes staying for dinner, sometimes for three weeks. For awhile our house was a way station for women in flight from abusive men, or for hippie mothers desperate to leave the city. They stayed until they found their own places, all the kids camping out in the same bedroom. In other words, neither I nor my children had led a typical middle-class life. And though they were choosing more conventional lives as adults, I was still out there seeking adventure, following my instincts to new experiences with offbeat people.
Finding myself alone among “the straights” threw me into panic mode. What if someone asked what I did for a living (phone sex)? How would I answer questions about my marital status (divorced longer than I’d been married) or sexual orientation (bi)? What if my kids innocently let on I was a writer, and they asked me what if anything I’d published (mostly erotica)? Among these well-dressed, well-heeled people who seemed to share a set of moral assumptions, I would have to be very, very careful. The list of data about myself that I’d have to hide was long. It included poverty, maternal conflicts, and a scandalous past highlighted by the four years I went AWOL and the kids lived with their father….
To read the remainder of this, you’ll have to take a look at the book!
Book Release Reading for the Groundbreaking Anthology
My Baby Rides the Short Bus
Saturday, November 14th, 2009, 7 p.m.
at Bluestockings Bookstore, 172 Allen Street (between Rivington and Stanton), Lower East Side, Manhattan.
Featuring readings by contributors and New York City writers Ayun Halliday (Dirty Sugar Cookies) Jennifer Silverman, Sabrina Chapadjiev (Live Through This), and Sharis Ingram.
In lives where there is a new diagnosis or drama every day, the stories in My Baby Rides the Short Bus provide parents of “special needs” kids with a welcome chuckle, a rock to stand on, and a moment of reality held far enough from the heart to see clearly. Featuring works by counter cultural parents, this anthology carefully considers the implications of parenting while raising children with disabilities.