Sunday, July 02, 2006

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 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.


coby said...

Strange you would write about this today as, yesterday we had some of our family get together and were discussing a similar topic. We were discussing how news (media reviews) are not so much a source of information anymore but more so a source of entertainment. It's sometimes frightening that we pay for this entertainment and feel powerless by what comes out of it. It's sad to know that so many people do things for business, money or their own agenda and then hurt people along the way. It's great you keep us so honestly informed and share so openly. Thanks again for this blog.
Love and prayers always!!!!!!
Coby and the boys :) :) :)

Michelle said...

Great piece you wrote about the media and how they sure can twist things around! They had the opportunity to do something good and blew it.

Barb said...

Way to go Annette!!!!
I just knew I was right when I said to your Mom these "SPECIAL" kids are given to SPECIAL people.

You and your family are in my daily prayers.

Take care!!

Jeff said...


Thanks for the post in your blog. We all hope to see you sometime again soon.


Mauzy said...

Hey Annette! Yes, the media issues and "outdated stereotypes" continue to allow us the opportunities to educate.

Like "THEY are always so sweet"...we both know personally THAT ain't true LOL

and Barb, don't know you, but know you mean well when you "I just knew I was right when I said to your Mom these "SPECIAL" kids are given to SPECIAL people." We are just parents, who were given some kids that happen to have extra chromosomes on their 21st pair. No big deal, just parents, and just kids....

Happy 4th to all! and Annette....can't wait to see you in Atlanta!

Jan, proud mom to Nash who drove us so crazy for 4 days over the holidays we are ready for something "special"!