Living with Down syndrome By Coen Lammers
Having a daughter with Down syndrome is possibly the best thing that has happened to our family - as well as the most challenging. Watching Bella flourish for the past 16 years, we know that living with Down syndrome is not a curse or punishment, but a terrific, enriching adventure filled with joy and surprises, as well as the odd road bumps. The recent storylines on Shortland Street created a storm in parts of the Down syndrome community because they depict old-fashioned, ignorant ideas around the disability and have nothing to do with our day-to-day experiences in a modern, inclusive New Zealand society. Bella’s birth was a shock and surprise to the family because we had decided not to have any pre-natal screening test. My wife and her family took a while to come to terms with this new reality, but I had grown up with an uncle with Down syndrome and thought I knew what to expect. What I did not realise back in 2001 was the incredible impact our wonderful, multi-talented, sociable and loving daughter would have on our entire wider community.
CHAT 21 | Issue 75, Spring 2018
Bella performing with Jolt in last year’s stage show.
Her outgoing, chatty and cheeky personality has turned her into a mini-celebrity in our small town and most people only know us as Bella’s mum, dad or brothers. We are fortunate that Bella was born in a marvelous, inclusive New Zealand society that encourages and practices mainstreaming in education and positive community participation by disabled people. Like many other countries though, we are currently grappling with the ethical debate around improved pre-natal screening, which now gives pregnant women near conclusive evidence to determine if their baby will have Down syndrome. The New Zealand Down Syndrome Association does not challenge any woman’s right to choose whether she wants to abort her pregnancy, but there is a desperate need for more balanced information for expecting parents to make a well-informed decision. Currently, the advice to pregnant mothers is purely medical and based on potential medical complications that MIGHT happen. On top of the initial shock of a positive screening, young parents are exposed to blatant fear tactics, so it is not surprising that many of them opt to terminate. Unfortunately, our Government does not keep any
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