Month: August 2008

Hi All!

I will post about the week later today….all is well!!! But I have been struggling with the release of Tropic Thunder and how to ‘keep my sense of humor’. I think Timothy Shriver does a good job of relaying my thoughts. 🙂

Timothy Shriver, Chairman of Special Olympics, has an op-ed piece on
“Tropic Thunder” in the Washington Post (read below).

By Timothy Shriver
Monday, August 11, 2008; A15

I’ve been told to keep my sense of humor about the film “Tropic
Thunder,” which opens this week. Despite my requests, I have not been given the
chance to see the movie. But I’ve seen previews, read about it 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 and disease 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 best of 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.

The oncology nurse, Nurse John came down to get us. He was a big, burly man who handled Sarah with delicate hands. I chuckled to myself as he carefully lifted our tiny daughter. His biceps were decorated with tattoos. He looked like he should be watching the door at a biker bar instead of wearing Thomas the Train scrubs. He reached down to get Sarah and held her as though she were made of porcelain.

“Let’s get you upstairs and settled.” He cooed to Sarah.

We followed him up to the 5th floor, listening to him in our catatonic state. There was a huge STOP sign on the door to the ward.

“This is a clean floor.” Nurse John said. “The kids up here have such compromised immune systems we really have to be careful. No colds, no other siblings and you can’t use the bathroom in the room; it’s shared with the kid next door and we can’t contaminate it with anything.” He handed us a sheet of paper explaining the 5th floor protocol. I felt filthy, germy and infectious.

I always wondered what went on behind those doors with the big red stop sign. Drama, I thought, doctors running through the halls, children screaming behind closed doors. Instead, it was very quiet and very clean. Doors were decorated with bright get well cards and big signs as to whose room it is….Welcome to Ashley’s room, Nathan’s room…it hit me, kids are here for a while.

We walked in our room and laid Sarah down in the crib. The front bars of the crib were down since they needed to treat her and there was no fear of her rolling. Sarah used to roll; but not today. The hospital crib looked like a baby jail. The bars were metal and made a loud clanging sound when locked into place. She looked so small in this big metal cage. I wanted to crawl in with her and cuddle.

I tried to schooch in next to her. “Will the crib hold me?” I asked, trying to sneak a hip up on the mattress.

“Hmmm, probably not,” Nurse John said.

I got off the bed and wandered aimlessly around the room biting my cuticles, trying to think of someway to feel useful.

“Can we feed her?” my husband asked

“Sure, let me get you some formula, we’ll see how she tolerates it.”

Finally! I thought. Some sense of normalcy…feeding the baby; all normal, healthy babies eat. Sarah was going to be just fine.

Nurse John brought in a couple bottles of soy formula.

“She takes milk based formula.” I said.

“Why don’t you give this a try. Soy is easier on sick kids tummies. We use it around here all the time.”

I glanced over at my husband. We had asked our pediatrician about switching to soy months ago due to her reflux. “No, no” he assured, “milk protein is the best. We don’t need to switch her.”

Stupid, stupid, stupid, my husband and I had talked after our doctor’s visit about concerns we had with our pediatrician. We decided to stay with him until Sarah’s six month appointment. I felt that we had lost precious time listening to a doctor who dispensed flippant information. Maybe if we had switched to soy we wouldn’t be here, I thought.. I took the formula, gently cradled my daughter and started to feed her. Sarah seemed to wake up a bit. She took the nipple and slowly began to eat. I breathed a sigh of relief. At least I can still feed her.

Sarah drank two ounces and seemed pretty content. She looked directly at me as her body tensed and gave a loud farting sound. Bill, Nurse John and I looked at each other and started to laugh. Sarah gave a slight, relieved smile.

I looked down at my jeans and saw that Sarah’s little noise left me covered in yellow baby poo. “I could be wearing these clothes for a while.” I thought. I set Sarah down, cleaned her up and then cleaned my jeans off. Funny, a couple of days ago I would have been a little disgusted by being coated in poo, now it was just part of the day.

I remember reading a book when I was a teenager about a 19 year-old boy who had leukemia. His mom was donating blood one day when she noticed the woman by her side had poo on her crisp, white pants. When she pointed it out to the woman she said “honey, when you’re in the leukemia ward, your life is covered with shit.”