Today's edition of The Current contained an excellent piece about Down Syndrome, particularly regarding potential implications of recent research on the 21st chromosome. You can listen to the piece here. Following is a letter I sent to The Current in response.
I want to congratulate you for your piece this morning
covering the recent research on the 21st chromosome, and its
potential implications on the life and the existence of people with Down
Syndrome. As the parent of two
kids with Down Syndrome, and a long time member of L’Arche, my life is full of
interactions, relationships, humour, and struggle centred around that extra
piece of genetic material.
To hear both the scientific perspective, and the opinions of
two articulate and passionate parents, was a refreshing shift from the typical
media coverage of disability, which inevitably assumes that disability is bad,
and thus eliminating the disability must be good.
Most importantly, your decision to talk with an individual
with Down Syndrome was what made your coverage exemplary. Too often, debate and decisions about
people with intellectual disabilities happen without their participation or
consent.
In 2011, researchers at Boston’s Children’s Hospital published
three studies about individuals with Down Syndrome and their families. Among other results, their studies
reported that nearly 99% of people with Down Syndrome indicated that they were
happy with their lives, 97% liked who they are, and 96% liked how they
look. Before we push ahead in our
efforts to eliminate Down Syndrome, perhaps we ought to spend a little more
time and effort hearing from people who are proud of who they are, regardless
of their genetic differences.
