You'd Think I'd Be Happy About This, Wouldn't You?

This is what I'm talking about. The newly signed Kennedy Brownback Bill. For those who aren't exactly sure what the heck that is, let me give you the simple version.

President Bush has officially signed into law the Prenatally and Postnatally Diagnosed Condition Awareness Act, co-sponsored by Senators Kennedy and Brownback, hence the name of the bill.

Sorry for the not-so-simple wording. But that's what it's called and when government is in charge of naming something they generally tend to go overboard. It's a good thing they're not in charge of naming our children. But that's not spelling it out, so I'll move on.

This bill, in essence, requires that medical professionals relay up-to-date information on Down syndrome and offer support to families who have just had a child diagnosed. (It covers other disabilities as well, which is even better.)

This is incredible news. I am thrilled by this bill. And Senator McCain signed on with it as well, which makes him an awesome supporter of those with disabilities. I have to think that Governor Palin had a lot to do with his signing on with this, and I'm grateful. I know that before Micah was born I was sympathetic to those with disabilities. But after his birth, I am an advocate. There's a world of difference and I think we can expect to see a lot more advocacy from both of them in the future.

But we're not here to talk about the McCain/Palin party. We're talking about the Bill. The one that is an incredibly historic moment in the world of disabilities. The one that will likely change the path of many families and perhaps make that path a little easier to travel. The one that shouldn't need a bill to make happen.

Yep, I said it.

Unless you've been in that hospital bed, holding a newborn in your arms, and have just been told that your son has a genetic abnormality that makes him permanently disabled, you have absolutely no idea what it is like. And you can't even pretend. And the fact that most doctors (as well as people everywhere) consider Down syndrome a defect doesn't help.

When you're giving news like this, I understand that there's no way to break it gently. That's a given. But what you can do is make that person a little less afraid. Paint a rosier picture than the one that is most assuredly swimming in their heads. Help them understand that this is not the end of the world, just a new beginning. Give the families information, and contacts to support groups, and offer help in any way that you can. Isn't this common sense and courtesy?

I mean, if someone was just diagnosed with cancer, do the doctors state that cold fact, say there are clinics out there to help, and leave? Of course not. (Or at least I'd hope not!) I'm sure they're offering as much support as they can in a professional setting. So why is it different when a child is diagnosed with a disability?

Why did they have to make a law to have this happen?

I'm glad someone got fed up with the doctors that pressure parents to abort rather than giving them information and allowing them to make their own choices. (We all know where I stand on that, though.) I'm glad someone got frustrated enough at doctors giving a bleak outlook on their child's life and made changes so that other parents wouldn't have to be kicked in the gut when they're already down. I'm glad someone headed up the grassroots movement that changed the way the medical profession has to present facts to families who just delivered a child they weren't expecting.

If only it would change their way of thinking.

Maybe I'll spearhead that movement. And Micah will be the spokesperson, because my son has a Voice.


13 comments:

Karen Deborah said...

AMEN AGAIN! and that is one of the most beautiful pictures you've ever posted!

Irene said...

That is absolutely one of my biggest pet peeves. There are so many incredible support groups, but all we got from our genetic counselors, doctors etc, were questions as to whether we were going to terminate. It took me 6 months (with absolutely NO help from any "counselors") after Caroline's birth, but I finally found the most incredible online support group at trisomyonline.org. Finally, I found people who could give me advice and support about living with a child with a trisomy rather than just the doom and gloom I got from the medical professionals.

Flea said...

I love the photo of Micah and his Voice. :) Off to work, but I had to stop here first!

the planet of janet said...

unfortunately, it often requires a bill like this to make something that seems so obvious a reality.

wish it weren't so. but it is.

at least the bill exists now.

Karen said...

I couldn't agree with you more. I worked for years with adults and teenagers with disabilities before we began having a family of our own. I think far too often, parents assume that their child will not accomplish much and are given a very bleak picture of the future. I can tell you that I met many people and knew some well who held jobs, lived in their own homes and some who started families of their own. You never get this kind of information from a doctor. I hope this Bill will make a difference in lives of many.

Michelle said...

I'm with you... I hate that common sense (and decency, just about) has to be legislated. And compassion is lost along the way. Changing people's perceptions will unfortunately take way more than just a law, I fear.

And I love seeing that Micah is still using his voice!

http://anglophilefootballfanatic.com said...

Yay for the bill, but I hope it works. Sadly laws must be passed to just do the right thing. And, yay for that voice. I'm still elated over it for you.

Cecily R said...

Its a sad commentary on our society, but I AM glad it passed.

And...I'm still so thrilled for you and Micah and his voice!!

Cecily R said...

Its a sad commentary on our society, but I AM glad it passed.

And...I'm still so thrilled for you and Micah and his voice!!

Trannyhead said...

I must admit I'm rather shocked that they would just walk in, say, "Your child has Down" or something similar and then just walk out and not try to direct you to support groups, organizations, and help. Some people just don't have any sense.

Andrea said...

I am glad that the bill was passed. I am also very happy about Micah's voice!! I love that picture. He looks like he really loves his voice!!

Colleen said...

Yay! I hadn't heard about this...but then again anytime I turn on the radio or news, it's all election stuff.

I still think Micah's Voice looks like an old Speak and Spell. :)

Michelle said...

You're so right that it is a shame this had to be signed into law; and from what I could gather as I followed - it was a hard fought one too.