Nova Scotia Down Syndrome Society

I grew up with Corky in the late eighties and early nineties.

Corky was the young man with Down syndrome, played by Chris Burke, in the hit TV-series Life Goes On. Corky was loved by his Hollywood family and audiences alike. It was hard not to sympathize with this caring, open minded, and outgoing teenager as he enters regular high school, tackles learning difficulties, turns enemies into friends and succeeds in finding his rightful place in the community.

This wonderful series taught me to see Corky, (and others), beyond their disabilities, and that was a lesson I will carry around in my heart forever. Having been exposed to positive role-models with a disability also made the conversation my husband and I had about pre-natal screening a lot easier, when I found myself pregnant at age 36. We both felt strongly that we would love this baby no matter what. It would not make a difference to us if our baby would be a boy, a girl, extremely smart, athletic, or have Down syndrome. Besides, what was the big deal?

A funny thing happened when we relayed our decision to decline pre-natal testing to the medical staff. The staff referred to my pregnancy as "in the hands of God." Naive, I thought the staff at this hospital must be very religious. Today, I realize that the issue of pre-natal screening for many is seen as an anti-abortion issue. However for me and my husband, both pro-choice, it was more an issue of a woman's rights, and of (dis)ability discrimination.

Our first baby was born with Down syndrome. Although we had discussed this possibility earlier, "the syndrome" still came as a shock. But we knew we could cope and quickly recovered. We started educating ourselves seriously about Down syndrome and bought the series Life Goes On on DVD and started an early intervention program.

A whole new way of life opened up for us. A life where everything happened at a slower pace, but with an intensity we could never have imagined. And, in the process we started meeting new people, a better class of people. Life went on.

While today, some 20 years later, you might expect that society's attitude toward and knowledge and information about Down syndrome has progressed even further than that of the late eighties and early nineties, nothing could be further from the truth. Women today, facing difficult decisions, rely solely on information given by medical professionals. According to the Sick Kids Hospital online "Health A-Z," children with Down syndrome "often have a short attention span ... and get frustrated and angry." We're told they often suffer from a range of emotional problems that include: "angry toward herself ... rude or out of place comments ... sad ... feeling hopeless over limitations ... agitated ... scared ..."

Have attitudes toward Down syndrome truly regressed to this level in less than 20 years? Unfortunately this appears to be the case. Many hospitals across Canada do not bother to inform about living with Down syndrome, but instead limit information on their information to the prenatal screening -- and prevention -- process. This isn't offering a choice to women; this is leaving women no choice.

Since February of 2007 most pregnant women in Canada are offered prenatal screening funded by the provinces. With only negative or misinformation available it is a sad but true statistic that over 90 per cent of parents in Canada choose abortion when faced with a prenatal diagnosis of Down syndrome. As president of the Nova Scotia Down Syndrome Society I have seen the number of registrations of new babies drop an astonishing 85 per cent.

Is this the aimed objective? Today, in Canada, only those lucky enough to know someone with Down syndrome, stubborn enough to initiate their own research about Down syndrome, or those who are pro-life no matter what, will experience that a life with Down syndrome is a life worth living.

If we don't speak up, life will indeed not go on for an entire population.

Renate Lindeman is the mother of April and Hazel (both have Down syndrome) and president of the Nova Scotia Down Syndrome Society.