Media and Down syndrome

A wonderful on-line friend of mine has a little boy with DS the same age as Ryan. Recently, Nash's picture was taken, with a few other children with DS, at a waterpark (apparently the cover shot was purchased by the local DS association at a fundraiser and the Executive Director worked with the magazine on the cover). She was thrilled - media coverage including children with T21 on a "regular" magazine just showing them engaged in "regular" activities. This isn't something you see everyday. Imagine her shock and dismay when she finds out the cover was used for a special maternity issue of Indy's Child that discusses the issue of prenatal testing for Down syndrome and other "defects". The article itself is fairly neutral (except for..to be discussed later) about testing. It lists exactly what each test does and how accurate it is. Except for...the last line of the article is the kicker: "I was fortunate. My daughter was born May 12 and shows no signs of Down syndrome. That's reassuring." Fortunate... unlike the parents of the beautiful children on the cover? What the heck is that about? There was nothing in the article about information for people who do find out prenatally that their child has DS. Nothing to help provide accuate information instead of the usual fear, doom and gloom that is generally provided to the uninformed people who receive a postive diagnosis.

I'm not going to get into the issue of prenatal testing on this post. I'll save that rant for another time. (But just as a teaser... did you know that about 80 - 90% of people who find out prenatally that their child has DS will abort? And most of them will have never actually spoken to a parent of a child with DS to find out what it's really like). What I want to vent about is the media.

I've had enough experience through Tom and his work to know that the media always seems to have an angle. I'm becoming very cynical about what I read in the paper as I know quotes and stories are manipulated to achieve certain goals. Just as an example, we have a local paper in our town that doesn't like the current Mayor. It's interesting to see how they very rarely now photograph her in Mayoral activities or give press to the positive things she is doing. In our own dealings with the press for our Buddy Walk, my friend Susan and I are always extremely clear with the reporter to avoid terms like "suffering from" or "afflicted with" DS. We emphasize people-first language (ie a child with DS) instead of terms like "down syndrome child" or "a downs". But even then, the poor old child attitude comes through, along with outdated stereotypes and facts that are sometimes just plain wrong. That's why I want to continue to advocate on behalf of people with DS. So that we DON'T need to continue to educate everytime we do an interview. So that old stereotypes and misdated information aren't taken as facts. So that people with DS are presented first and foremost as people... doing regular old people things. And that's why I continue to celebrate reporters, magazines and newspapers that DO report well. I hope to post some more good news stories as I come across them in the future.

Now back to this magazine...I'm baffled as to the thoughts of the editor in this case. Could it honestly just be a coincidence that this magazine chose to do this? It could be possible although I have a hard time believing that no one at the magazine recognized that they had a cover of children with DS on an issue discussing prenatal testing. Looking on the bright side... do they think that by putting a picture of beautiful kids who happen to have DS on the cover, they somehow negate what's written inside? Are they trying to show the positives? I'm not sure and not very hopeful that that's the case. I honestly cannot fathom what was going through this man's mind when he did this. In any event, I know Jan, her husband and the parents of the other children feel used, betrayed and lied to. I know that there have been letters to the editor already written and am looking forward to seeing the outcome of this. I hope that the editor will apologize and realize what he's done.