This post was submitted and rejected as an OP-ED for the New York Times
The discussion about new guidelines for mandatory prenatal testing of all pregnant women for Down syndrome has engendered a movement of parents of these children whose goal is raising awareness of what life with Down syndrome is like. This was the subject of a video produced by reporter Amy Harmon of the New York Times. In the video, she discusses this movement, which has resulted in projects like the book “Gifts: Mothers Reflect How Children with Down Syndrome Enrich Their Lives”, the Prenatally Diagnosed Condition Act, ( written with the help of the National Down Syndrome Society, and co-sponsored by Senators Kennedy and Brownback ) which mandates that parents of Down syndrome children be given up-to-date information on the life expectancy, the lifestyle of people with Down syndrome, the educational offerings to help them learn, and the chance to meet parents of Down syndrome children. She postulates on what our goals may be. Is it increased funds for medical research on Down syndrome? Is it sufficient numbers to keep the political pressure up to obtain educational programs? While these are partially true, they don’t touch upon the heart of the matter. The mother Ms. Harmon quotes says it best, “we see children with Down syndrome as we go about our daily lives, we wonder if someday we won’t”. Seeing faces like theirs.
I know one person who enjoys seeing faces like hers. Christina Maria, my five year old daughter with Down syndrome loves to see her own face. She spends hours in front of a mirror we have placed at her height in our home, playing with herself, admiring how she looks in her different outfits, singing songs, making funny faces, and laughing at them. She is one of the most self confident people I know, she loves her looks, and seeks others who bear some similarity to herself. She especially loves seeing others with Down syndrome.
I have often gone out with crowds of mothers and children. In our social group, there is a 4 year old little girl named Mary Faith (pictured here) who has Down syndrome, and Christina never fails to find her in the crowd. When they come face to face, they gaze at one another, then easily fall into a play routine whose rules are known only to them. They can play silently in unison for a long time, with none of the pushing which Christina often inflicts on younger children. Perhaps they don’t ‘get’ the rules of how she plays. The Down syndrome rule.
I test her attraction to other faces of Down syndrome. We sit through a slide show of moms and babies with Downs. She is transfixed, and asks me to play it again. Her favorite book for Daddy to read is “Hi, I’m Ben” which has photos of a little boy with Down syndrome. I show her movies way over her interest level which is still at Barney, movies with actors who have Down syndrome, and there again is the silent absorption.
Recently, I took my girls to a movie screening in Manhattan’s HBO Theatre, to see “Mr. Blue Sky” where a girl with Down syndrome falls in love with her childhood friend. The crowd was full of Hollywood types, whom the producer hoped would take an interest in the film. I was horrified to realize we were sitting directly in back of one of them, with his head at kicking height for Christina’s restless feet. After a tense few minutes, where his wife’s head was kicked, the film began, and as Christina saw the actors with Down syndrome appear onscreen, her feet stopped, and she sat up, attentively watching the entire show. She clapped at the end. So did I.
We are fortunate to live in a community which is the center for Independent Group Home Living. Adults with Down syndrome are in the stores, the church, working in the restaurants and supermarkets. There is Camp Paquatuck in town, where busloads of children with Down syndrome and other disabilities come each summer. Very few people here do a double take when they see a face with Down syndrome. I only appreciate this when I bring Christina out of my town, and feel the stares. I don’t blame them, seeing faces with Down syndrome is a rare treat.
Inclusion into society is a beautiful thing, and we have much to learn about accepting physically and mentally challenged people. But, once in a while, when I am so different looking than everyone, I just enjoy seeing faces like mine.