A Generational Shift in Understanding Life With Down Syndrome

The change has been dramatic.
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When I was six, my friend Tom died. My Mum took me aside when I got home from school and explained that he had gone into the hospital for routine surgery but something had gone wrong. She said it was just as well that he had died. You see, Tom had Down syndrome.

I don't mean to slander my mother. Like my father, she thought this was humane and rational -- that we should not cling to life if that life is one of terrible suffering. She was repeating the conventional wisdom of the day, and that wisdom said that if you had Down syndrome, your life was not worth living. Others who ought to have known better were often worse. In the eyes of many doctors, children with Down syndrome were burdens that would bring only disappointment to their families and they pressed parents to put their children in institutions and tell everyone that the baby had died. These children, it was believed, would never be any use to anyone, and their birth was treated as a tragedy.

This is not intended as an argument against abortion. It is an argument for giving prospective parents of children with Down syndrome a full picture of what their life will be like.

My daughter Hazel was born with Down syndrome five years ago. I found myself thinking of Tom a lot in the months that followed her birth. My wife and I, and especially Hazel, are lucky that things have changed since Tom died. Hazel has had an array of specialists who have helped her learn to walk and talk and she goes to a regular elementary school with other 'normal' kids. She still has challenges. We haven't got her potty-trained yet. On the other hand, she knows her alphabet and she can count better than some of her classmates. She likes learning and she is enthusiastic about going to school. Much more than I ever was. I hated school.

We were also lucky that the head of the pediatric intensive care unit where Hazel spent her first month of life had a positive outlook on children with Down Syndrome. I remember him telling us not to place limits on what she could do, his relief when it became clear we were committed to our daughter. You see, old attitudes persist. Some people still believe that children with Down syndrome are a burden, their lives not worth living. A lot of people, to judge by message boards under articles about pregnancy screening. The problem is compounded by the doctors who present prospective parents with a uniformly gloomy outlook. Many parents of kids with Down syndrome can attest to this. In some cases, rather than congratulations new parents get a barrage of health statistics and there is still often an assumption by medical professionals that women carrying a child with Down syndrome will terminate the pregnancy. Around 80 percent of women who get a positive test for Down syndrome still choose to have an abortion. Yet I cannot think of any parents of a child with Down syndrome who would give them up for anything.

Love has a way of making statistics irrelevant, and it brings its own kind of knowing. I do not love my daughter any less because she has Down syndrome. Her diagnosis says very little about who she is. She is not a disease or a syndrome but an individual: affectionate, naughty, infuriating at times, stubborn, self-willed and utterly charming. Certainly she has medical problems and developmental challenges not faced by other children. I'm not saying those don't exist. But they're one part of a much bigger picture.

This is not intended as an argument against abortion. It is an argument for giving prospective parents of children with Down syndrome a full picture of what their life will be like. It includes a lot of work. Their child will likely have more medical problems due to their condition, and it will take time and effort to reach developmental milestones that other parents take for granted. But all these challenges are manageable, especially with the level of support available now. Expecting parents need at least to talk to the family of a child with Down syndrome. Otherwise they cannot know what it is like or what to expect. Statistics cannot tell you this.

It is also an argument for changing attitudes that appear self-evident to too much of the general population. You cannot know if someone else's life is worth living without asking them and without even knowing them. A disability does not necessarily stop you living a full, satisfying life. Oddly enough, I'm not sure that disabilities have anything to do with living full satisfying lives. When it comes to Hazel, her life is not a burden to her family but an unending source of delight. For my part, I cannot imagine life without her. But most importantly, her life is valuable to herself, and definitely worth living.

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Theo Malekin is visiting lecturer at the University of Illinois and a proud parent of a child with special needs.

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