Monday, August 18, 2008

Sisters

I went to pick up Madison at school the other day, and who did I see but another little girl with Down syndrome.

My heart melted into a shining, sparkly puddle; the liquid love infused my entire body with joy.

I went up to her, bent down, and said with a big smile- "Hello, sweetie!" And I was rewarded with THAT SMILE.

You know the one. The smile that lights up the world. Pure love, pure innocence. Pure something else...I haven't figured out just what that quality is yet. Perfection? Maybe.

And then I looked over at my Madison. Looked back at the girl. Looked at Madison. Looked at the girl. She was dark to my baby's light. Her hair was in a ponytail, like Maddie's. Her eyes were that lovely almond-shape, like my daughter's. She was petite, like you-know-who. She exhibited the same aura, the same cloud of mystical joy around her. Surely I am not the only one who notices?

My heart gives another jump as I realize that these two could be sisters, they look so similar to each other.

They must be angels in disguise.

Tuesday, August 12, 2008

Why I won't See See "Tropic Thunder"

I was going to stay out of this one, I really was. There are a lot of people commenting and blogging about this topic already. But I can't stay out.

No doubt by now you've heard the debate--"Tropic Thunder" is a Ben Stiller, uh, comedy, if you can call it that. It's also rated "R" so I know that a lot of you won't be going anyway. In the plot is a movie-within-a-movie, where the actor plays someone with intellectual disabilities.

I can hear the new catch-phrase now--You Never Go Full Retard. Nice. I'm just glad my daughter is too young to know about the way society thinks about her.

I usually don't put anyone else's words on this blog, But this is too important not to.






What ‘Tropic Thunder’ Thinks Is Funny
By Timothy Shriver Monday, August 11, 2008; A15


I’ve been told to keep my sense of humor about the film “TropicThunder,” which opens this week. Despite my requests, I have not been given the chance to see the movie. But I’ve seen previews, read aboutit and read excerpts of the script. By all accounts, it is an unchecked assault on the humanity of people with intellectual disabilities — an affront to dignity, hope and respect.


Consider this exchange:
Ben Stiller’s character: “There were times when I was doing Jack when I actually felt retarded. Like really retarded.”
Robert Downey Jr.’s character: “Oh yeah. Damn.”
Stiller: “In a weird way, I had to sort of just free myself up to believe that it was okay to be stupid or dumb.”
Downey: “To be a moron.”
Stiller: “Yeah.”


At another point, about acting like a person with intellectual disabilities, they say:
Stiller: “It’s what we do, right?”
Downey: “Everybody knows you never do a full retard.”
Stiller: “What do you mean?”
Downey: “Check it out. Dustin Hoffman, ‘Rain Man,’ look retarded, act retarded, not retarded. Count toothpicks to your cards. Autistic, sure. Not retarded. You know Tom Hanks, ‘Forrest Gump.’ Slow, yes.Retarded, maybe. Braces on his legs. But he charmed the pants off Nixon and won a ping-pong competition. That ain’t retarded. You went full retard, man. Never go full retard.”


I worked with the Farrelly brothers on a film on this topic. I know about edgy comedy. I’m also told that movies are equal-opportunity offenders.

So here’s an equal-opportunity response to the equal-opportunity offenders:
People with intellectual disabilities are routinely abused, neglected, insulted, institutionalized and even killed around the world. Their parents are told to give up, that their children are worthless. Schools turn them away. Doctors refuse to treat them. Employers won’t hire them. None of this is funny.


For centuries, they have been the exception to the most basic spiritual principle: that we are each equal in spirit, capable of reflecting the goodness of the divine, carriers of love. But not people with intellectual disabilities. What’s a word commonly applied to them? Hopeless.

Let’s consider where we are in 2008. Our politics are about overcoming division, our social movements are about ending intolerance, our great philanthropists promote ending poverty anddisease among the world’s poor. Are people with intellectual disabilities included in the mainstream of these movements? For the most part, no.

Why? Because they’re different. Their joy doesn’t fit on magazine covers. Their spirituality doesn’t come in self-help television.Their kind of wealth doesn’t command political attention. (The bestof the spirit never does.)

Sadly, they’re such an easy target that many people don’t realize whom they are making fun of when they use the word “retard.” Most people just think it’s funny. “Stupid, idiot, moron, retard.” Ha, ha,ha.

I know: I could be too sensitive. But I was taught that mean isn’t funny. And I’ve been to institutions where people with intellectual disabilities are tied to beds or lie on concrete floors, forgotten. I’ve heard doctors say they won’t treat them. I know Gallup found that more than 60 percent of Americans don’t want a person with an intellectual disability at their child’s school.
I’ve talked to people with intellectual disabilities who cry over being insulted on a bus. I’ve received too many e-mails from people who are devastated not by their child’s disability but by the terror of being laughed at, excluded and economically devastated.


It wasn’t funny when Hollywood humiliated African Americans for a generation. It’s never funny when good and decent human beings are humiliated. In fact, it is dangerous and disgusting.
This film is all that and more. DreamWorks went so far as to create a mini-version of Simple Jack and posted it online. The studio has since pulled it down, realizing it had gone too far, even in an age of edgy, R-rated comedies.


So, enough. Stop the hurtful jokes. Talk to your children about language that is bullying and mean. Ask your friends, your educators, your religious leaders to help us to end the stubborn myth that people with intellectual disabilities are hopeless. Ask Hollywood to get on the right side of dignity.

I hope others will join me in shutting this movie out of our lives and our pocketbooks. We don’t live in times when labeling and humiliating others is funny. And we should send that message far and wide.

The writer is chairman of Special Olympics and a columnist for washingtonpost.com’s On Faith discussion site.

Friday, August 8, 2008

Spreading Awareness

I wore one of my advocacy t-shirts today to one of my son's soccer practice.

It says-Down syndrome isn't scary, it's just different.

The reactions I get are so varied! Most people take a quick look while in passing. I can see them read the message and absorb it. That's exciting! It's a quick message to someone that hopefully will stay lodged in their brain for life.

Some people take a look at my shirt and then always turn and look for Madison. These types never smile, in fact some of them have such sourpuss looks on their faces that I wonder if they have a toothache or something! What's wrong with them? Don't they know how special my daughter is, or really ANY child when you get right down to it?

Most people LOVE my daughter because she is super cute and sweet! She waves madly at most anyone who takes an interest in her. When she gives you one of her 500 watt smiles you cannot help but smile back. It's physically impossible to resist her.

I plan on continuing to educate people for the rest of my life--to let people know that a child with Down syndrome is just a little different than any other child. And really, they are not that different at all!

It is my hope that people see how NORMAL she is and think twice before assuming that a diagnosis of Down syndrome is bad. Yes, it is different, but most certainly not the end of the world.

If you think a diagnosis of Down syndrome is undesirable, try telling that to the hundreds of families waiting to adopt a child specifically with Down syndrome.



Thursday, August 7, 2008

Love the New Home

Thanks, everyone, for being patient as we move our old blog to it's new home. I like the new place! Eventually the old posts will be re-published here (just the good stuff) and soon after the old place will be a ghost town.

Don't miss a post--subscribe to our blog! I usually get a post out every couple of weeks, so your inbox won't be flooded with mail--at least not from me! ;)