Thursday, August 1, 2013

Chromosomal Controversy

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.

1 comment:

Allison Brewer said...

Hi Jenn;

I just saw this. I'm not sure how it's escaped me all this time. I do follow you around a bit.

I wanted to mention that it was not CBC's idea to speak to someone in the target group when they put this panel together. When Renee told me she was going to be part of it I suggested she take Will along, which she did happily.

I find the media, and particularly CBC, leave people with intellectual differences out of the conversation far to often. To their credit, the CBC folks here did welcome Will into the studio with Renee and gave him a turn on the mike. I still tear up when I hear that opening which I use periodically to introduce him, most recently on Wednesday when John DeMont came to interview him for a column for the Herald. I'm not sure whether or not you saw it. It's really neat:

Hope all is well with you and your beautiful boys.