The Lucky Pumpkin

I came across this video on you tube. It was produced by Gigi’s playhouse, which is a social club of sorts in the Chicago area for people with Down syndrome. (There are two groups in the Twin Cities metro that I know of who are trying to do something similar here, one in the east metro, and one on the west side.) www.youtube.com/watch?v=t_0K-gPlyb0

I love this video. It really puts a face on the issue that I have seen referred to as “retard-gate ‘08,” which of course is the Tropic Thunder movie and it’s use of the word “retard” as an insult. If you read my post, “Letter to Oprah,” http://theluckypumpkin.com/?p=66 you know that I would love to see Ben Stiller look at a person with Down syndrome in the face and call him or her a “retard.”

I would like to make one more comment about this movie. Many people are defending it by basically saying that it is all right to use this hate-speech repeatedly in the movie because it is satire. Well, yes, I am sure that it is satire, but I am here to say that I have taught children for fifteen years, and I know that most of them do not understand satire. Also, make no mistake that in this day and age, with On-Demand and DVDs, many children will see this movie. (Not to mention the kids whose parents will let them see it in the theater and the pirated copies of movies that kids probably know how to download better than their parents.) Final thought: Don’t we as a society deserve better?

Two quotes that really struck home for me in this video are, “I am all my parents could ever wish for,” and “Sometimes the perfect person for you is the one you’d least expect.” This is exactly how I feel about Emily (and Anna, too.) Before Emily was born, I used to pray that she would be the right fit for our family. I was particularly sensitive because I have always had difficulties with my brother and I wanted a nice sibling relationship for my girls. Now that she is here and I know so much more about her personality, I can see how she is the perfect fit for us. God totally answered my prayers! I hope that everyone who reads this and Ben Stiller and his cohorts, too, have the joy of developing a close relationship with someone with Down syndrome. I truly think that it would change the world!

The boy with Down syndrome who had septic shock died on Friday. The whole community is grieving for him. I know that those who have gone before us in heaven are having a huge party right now. They are welcoming Home a brave soul who in his short time here inspired many to overcome their prejudices and to see the unique beauty and innate worth in ALL of our lives. I want to say, “Thank you,” for a life well-lived.

I am so glad that I live in this community. People here are so nice and accepting (on the whole.) I don’t see the stares here that I see in other places. There are quite a few people with Down syndrome who live in this community, and I have never seen anyone being treated poorly for having Down syndrome. (Except the stories that I mentioned in an earlier post that happened in church, of all places!) There is a sign-up to deliver meals to the family who lost their son, and it is already filled for every day from now through the first week of October. Many people didn’t even get a chance to sign up! I think that speaks for itself!

This weekend we went to the North Shore, (that is the shore of Lake Superior from Duluth north up to Canada.) We had lots of fun, but it was obvious to us that people weren’t as used to seeing people with Down syndrome as they are down here. We got lots of long looks from people. I really think they were just curious. There weren’t any scowls, and many people smiled. It is just more of an oddity there. It is fun to go on vacation, but even nicer to get home, where we don’t get as many stares! One family at Betty’s Pies outside of Two Harbors (a wonderful place to eat with excellent pie,) smiled at us as we left and the teenage girls said, “oh, she’s (Emily’s) so cute. She looks like a doll!” I agree!

Here is a letter that I sent to Oprah today. I hope that she will provide a forum to address this issue.

Dear Oprah,

Please consider having a show to address the controversy surrounding the movie Tropic Thunder and the hate speech that it contains. Timothy Shriver, chairman of the Special Olympics has called for a boycott of the movie. Especially repugnant in the movie is the use of the “r-word,” (retard,) as an insult many times, as well as the scene where Robert Downey Jr.’s character tells Ben Stiller’s character that real actors, “Never go full retard.”

Shriver and representatives from other disability advocacy groups asked Stiller, who co-wrote the movie, and Stephen Spielberg form Dreamworks, to make changes to the movie. They refused, and released the movie as-is.

I would like to hear a defense from Stiller and Speilberg. I was so inspired when you had the shows with Russell Simmons and other people from the hip-hop industry to discuss the hate-filled lyrics they sometimes use, and you had the courage to say what most women in America were thinking, “Enough!” I think that you could do the same thing with this issue.

Kids tend to repeat things they hear in movies. These phrases become “catch phrases.” I cringe to think of how many kids will be saying, “Never go full retard,” in the halls of schools as they open for the new school year in the next few weeks.

My daughter has Down syndrome, and she is so full of love, and enthusiasm for life, that she will never be able to relate to that kind of hate-filled language. But she would be hurt by it, all the same.

I remember a few years ago, people saying that “fat jokes” were the last acceptable form of crude “humor.” I think that now, it is the word, “retard.” I think that people just use it so nonchalantly, as if it was no big deal. They don’t even think about whom they are hurting when they say it.

Please consider using your influence to open up a dialog on this issue. People respect what you have to say. I think you could make a huge difference in the lives of those with cognitive disabilities. Please do it for those who do not have the resources to get their voice heard on their own. Please do it for my daughter Emily, so she can grow up in a world that is more understanding and tolerant.

Thank You

Sincerely,

Mary

I know that I said I would write about the horrible movie Tropic Thunder and the lame excuses that Ben Stiller and his cohorts in Hollywood, (including Stephen Spielberg at Dreamworks,) have for the horrible hate-language used against those with cognitive disabilities, but my heart is so heavy with sadness that I can’t do it tonight. I just can’t get the little boy with Down syndrome who is in septic shock out of my mind.

When Emily was born, the Down Syndrome Association of Minnesota gave us a packet called the Down Comforter. (Cute name, isn’t it?) They included books that are informative and uplifting. The informative one is still unread. I started, and I just couldn’t deal with all of the technical info. Don’t get me wrong. Even though I am a Music Teacher, I still did really well in math and the sciences in school. I love to learn, and technical stuff isn’t too difficult for me to understand, it is just that it hurt my soul too much to take it all in. It is different when it is your precious child. (I know what you are thinking - DENIAL! That is true to an extent.) When Emily was about six months old, I started to search health information a little at a time on the internet. I had to stop when I read that the life expectancy FOR THOSE WHO MAKE IT PAST THE AGE OF TWO, is sixty years. I know that there are no guarantees in life and anyone can die at anytime, but no one wants to read that about their child.

Part of the lower life expectancy is related to the heart condition that many children born with Down syndrome have, but that does not account for the whole discrepancy. As a mother, it is something that always lurks in the back of my mind. I have always been a worrier and a planner, (probably in an attempt to control the situation,) but you can’t plan your way out of this. I am learning to let go and to ask God to lift me up when the sadness comes. Emily always lives in the moment, and I am trying to follow her example. She is so adorable, and so full of happiness, enthusiasm, and love, that it really is infectious!

It just seems doubly cruel for all of this Tropic Thunder crap to be coming out today, when one of God’s most precious children is fighting for his life.

Please go to the site www.blueberryshoes.com to see a very short informative video, then please go to r-word.org and pledge your support to help stop using the “r-word” as hate speech. You can also click on Learn the Facts, if you think you can stomach it. It tells all about the movie, and why people are so upset. Also, please boycott the movie. Hit them where it hurts. Hollywood appears to be a lot like the Catholic Church, they only make changes when people speak with their pocketbooks.

Also, if you would like to be an advocate for those with cognitive disabilities, consider taking a minute to email coca-cola to give them feedback about their commercial that features Special Olympics athletes. The more big corporations hear positive comments about their support of Special Olympics, the more likely it will continue.

http://www.thecoca-colacompany.com/contactus/cokefeedback/index.html

Thanks for your support of Emily and all of those in her shoes who are unable to speak for themselves.

Well, I was going to write about the lame excuse for a movie, Tropic Thunder, but I will leave that for tomorrow. I just found out that one of the little boys with Down syndrome in town here is in the PICU with septic shock. Apparently he had an ear infection, and somehow that expanded to the rest of his body. I understand that it is very serious right now. Please pray for him and his family.

This boy is going into second grade next year. Last year he had to talk to the principal for running out of reach from the staff during recess. The principal told him that it was a very serious safety problem to be all alone like that, and he told the principal, “I wasn’t alone, I was with Jesus.” What we all could learn from him…

Emily has really been improving in her speech.  Today was a superstar day!  She said, “mmah-lee”  a couple of times for “Emily.”  She also said, “Anna,” hi,” “eese,” for our cat, Reese, “moh–re,” for more, and “Hi Dada,” when Bob came home!  Also, I think she is finally getting her first tooth!

On the movement front, she is still scooting away.  We have been setting up barriers for her to climb over to keep her doing a crawling motion.  She is getting really good at it.  Her favorite barrier to crawl over is mom and dad!  She even pulled herself up to standing today using my hips as I was laying on the floor!

I have mentioned before that sometimes it seems like we go through a long time with no major progress and then, WHAM, many things happen at once.  I am glad we are in a phase with progress now.  If you have a child with Down syndrome and experience a period of slow progress, don’t get discouraged!  I have really seen Emily pick up since she got her tubes in her ears.  Not just progress in speech, but in movement, too.  It is like she was in so much pain before, it was casting a pall over everything.

Anna has been a cutie, too!  She likes to repeat phrases we use.  She is really good about using them appropriately, but sometimes she doesn’t get the words right.  For example, today she said, “Dad, you’re moving me crazy!”  It took a minute to realize she meant to say “driving me crazy,” but she got the main idea.  She also says, “Almost, but not quiet,” instead of, “Almost, but not quite.”  Out of the mouths of babes!