Thursday, September 11, 2008

Katie Couric on Down Syndrome: I Demand a Re-Write

So, what do we know about Down syndrome?

Down syndrome. It used to be a heartbreaking diagnosis for any parent, but in 2008, the picture is not as grim as society once believed.

Years ago people receiving this diagnosis often felt that their hopes and dreams were shattered, today, the outlook is quite different. The future is wide open.

While a diagnosis of Down syndrome means the child may have a cognitive disability (usually in the mild to moderate range), with advances in medicine and education people are learning more and living better lives than anyone thought possible even just a few years ago.

Congenital heart defects that require surgery are experienced by less than half of all children born with Down syndrome and modern surgery has improved outcomes for these kids so much that most will go on to have a normal life expectancy.

In the past, few people with Down syndrome were able live independently—this is no longer the assumption. There have been so many advances in healthcare, education, assistive technology, accessibility of public life and increasing employment opportunities that many people with Down syndrome are living lives quite similar to their non-disabled peers, and there is no reason to believe improvements will not continue.

Advances in medicine and technology, increasingly individualized care options and active advocacy have combined to create a future of possibility for people with all disabilities—whether from birth or acquired through illness, injury or age.

Now let's see what Katie Couric has to say:


Watch CBS Videos Online

Well folks, this would be an accurate picture of Down syndrome if this were 1968.

In 2008 this negative portrayal is appalling. This inaccurate story told by a grim-faced Katie Couric is unconscionable.

Also, I am not a Down syndrome parent. I am a parent. One of my children has Down syndrome. (Clearly the press needs many repititions to grasp respectful disability language--it's OK, I can accommodate that!)

I demand a re-write.

People with Down syndrome and their families deserve better.

[Edit: Several people have mentioned that they saw the piece on the news which included interviews with families, physicians and more and thought it was good. I agree with them. Then the person who wants to know more goes on line and finds this video where Katie Couric alone, intones grim, outdated portrayal. I do think re-writing of this piece is in order.]

10 comments:

Anonymous said...

What planet is she from? And what was the point of this "page from my notebook" If she was trying to help the parents who insist that all sides be shared, she really muffed it! She really didn't say anything - it seemed like she was just trying to jump on the sarah palin bandwagon. send her a link to this blog!
Kathy!

Phyllis said...

I agree that Katie Couric really didn't say anything meaningful -- slightly grim and stone-faced, it was not the warm and fuzzy when I'm around people with DS. I, too, have a son with Down syndrome. So, what's the big deal? He's the greatest person ever! Our hopes and dreams are that he WILL live a full and independent life -- just like our other kids. Maybe he might need a little more assistance, but certainly he is much capable of living independently and being a tax paying contributor to the community rather than a tax liability to the community.
The media truly needs to learn a lesson in "People-Friendly Language" putting the fact that our children are children first, and just happen to have Down syndrome. They are not "Down's babies" or "Down's".... they just have Down syndrome! It's a long time since we have had someone potentially in the White House that might see the lacking needs of our children with disabilities: Health Care Reform, education issues and employment are all critical areas where people with disabilities are discriminated against! 3 cheers for Sarah Palin and I hope Katie Couric gets the message!

Pam said...

Cheers to you Phyllis!! I too hope that your son (my nephew) Will live a full and independent life. He works sooo hard at everything he does. He is a joy to be around...just wanted everyone to know that our government needs a wake up call! Katie Couric you blew it!!!!! Phyllis...why don't you run for office????
Pam

Julana said...

One more reason to get news from trusted sources on the internet rather than the tube.

Jolene said...

How sad and uninformed for Katie Couric who continues her slide in popularity and obviously, knowledge about her stories. As the parent of a beautiful 3 1/2 year old daughter, Olivia, who also has Down Syndrome, these children have potential. Olivia walked at 15 months, knows her ABC's, counts to 20 and was potty trained at 3. Does that sound like a real problem? As parents we all expect the 'perfect' child. Life doesnt always give us perfection but she is the greatest joy of my life and Olivia has taught me so many things.

Phyllis said...

To Jolene,
No offense to your blog, but you did get PERFECT when you were blessed with Olivia!

Anonymous said...

Katie Couric, who is supposed to be an objective "journalist," is known to be adamantly pro-abortion. She isn't hiding it--just look at the way she stares into the camera when she says that parents expecting a DS baby can "make the CHOICE that's right for them." Meaning, it's perfectly OK to abort one of these sickly fetuses who obviously have no future and will be a burden to their parents... I was disgusted when I saw this commentary and I hope someone can reach her and reeducate her. And teach her some compassion as well.

Ettina said...

"Also, I am not a Down syndrome parent. I am a parent. One of my children has Down syndrome."

I don't agree with the insistence on person-first language, but I do agree with your objection to that phrasing. To me, a Down Syndrome parent is a person with Down Syndrome who has a child, not a person who has a child with Down Syndrome. I told a person off once for calling herself an 'autistic mom' when she was a non-autistic mother of a bunch of autistic kids, but it didn't seem to have any impact. It's as if disabled parents don't even exist, so when disability and parenting are talked about in connection with each other, it must be the child who is disabled.
Oh, and if you're wondering why I don't like insistence on person-first language, read this:
http://web.syr.edu/~jisincla/person_first.htm
The biggest reason that applies for me is #3.

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