Groan. Ack. Why?

After yesterday's dialogue, I was feeling really good about how so many of us could present different perspectives on a topic in which we have a huge vested interest and still be able to come together for the greater good of supporting our children. I was thinking that the world may be no match for the force of the Ds community. We've got a lot of power. Together we could educate the masses!

And then, POOF. Last night happened.

I am so disappointed with our President right now. I know he's human and I know that people make mistakes. But what settled with me last night as I read articles, watched clips of Leno's show, and digested reactions found all over the Internet is that sometimes even intelligent, well-liked, powerful people still inherently believe that it's ok to "mock themselves" at the expense of those that are developmentally disabled.

Special Olympics' Response

Related article

Another Article

What President Obama said last night is not unlike using the "r word." Likening his bowling to that of a Special Olympics athlete may be good for a giggle for most people, but think about it. He's not just making fun of himself. He's making fun of Special Olympics athletes. Assuming that they're somehow less-than and that being unskilled at something makes him like them. And that's a cheap shot. It's an easy joke to make.

Unfortunately, it's one that most people are ok with. Because really, who's complaining? Just us folks with a huge vested interest in making this world a more tolerant place so that we don't have to wonder about taking away the characteristics our kids were born with simply so that they won't suffer from unwarranted discrimination.

I think President Obama is a great guy from what I know of him. I don't think he's evil. Just like I don't think that all people who use the "r word" are evil.

In the interest of educating, I'm sharing this letter (italicized below). It was written by a member of my local Ds list-serve and it was offered up as a template for those of us who felt inclined to let the White House know that we are not ok with what was said last night.

Click Here to Contact the White House

Feel free to cut and paste as you like. The more people who write, the better so that our voice will be heard.

Dear President Obama,

This is regarding your comment about Special Olympics on the Late Show with Jay Leno. I am asking that you make amends for that unfortunate comment with your actions -- by increasing the funding for Down syndrome research.

Due to recent breakthroughs in genetics and Down syndrome research at facilities such as Stanford University, a treatment appears imminent. If individuals with Down syndrome can live more independent lives, the government could save much of the 6 billion dollars spent annually for people with Down syndrome, and these people could become tax-paying citizens. The long-term benefit to our society is huge. The initial, up-front cost of the research could, in the end, save taxpayer dollars.

For the majority of people with Down syndrome, a mere 10-20% improvement in cognition could mean that they would live independent lives and support themselves financially. This research could also help people with other developmental disabilities.

People with Down syndrome are living longer lives, many into their 70s, but nearly all will develop Alzheimer like symptoms by the time they are in their 40s. A link has been made between a gene associated with Down syndrome cognitive issues and the cognitive issues associated with Alzheimer?s disease. The research being developed for Down syndrome has the potential to delay the onset of Alzheimer?s, not only in people with Down syndrome, but in the general population as well.

I think Dr. Mobley, a Stanford research, said it best when he said, "During times of tight budgets, it may be tempting to de-emphasize research. And yet, research - particularly medical research - is the best investment we can make in health care for our country. If we are concerned about cutting future health care costs, we must look for ways to prevent those costs from occurring."

Thank you for your time. I know how valuable it is.

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And some more good info posted by a member of that same list-serve that helps to put it all in perspective:

To those of you who will respond -- it is also interesting to note decreased DS research funding by the NIH:

"Federal funding for DS research from the NIH has decreased over the past decade and is currently at $42 per capita. It is significantly underfunded compared to other conditions on a per capita basis:

Cystic Fibrosis: $3000 per capita or 71 times DS funding per capita

Huntington's: $1700 per capita or 40 times DS

Fragile X: $1529 per capita or 36 times DS

ALS: $1433 per capita or 34 times DS

Multiple Sclerosis: $422 per capita or 10 times DS

Parkinson's: $101 per capita or 2.5 times DS

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I wholeheartedly agree with those that state that this is a teachable moment that we can't let pass us by. Let this be an opportunity to share with the masses the truth about those with developmental disabilities and dispel the stereotypes. President Obama is very popular. A lot of people adore him. Shoot, there were inaugural balls in my small town over 3000 miles away from DC! Imagine the possible impact if he were to make a statement, take some action, share his own enlightenment.

At a minimum, I want to see a Special Olympics Athlete whoop up on BO in a highly competitive bowling match.