MOSAIC MOMENTS

Dave Hingsburger has a lot to say and always says it quite eloquently. In Dave’s Blog “Chewing the Fat” today, he wrote an open letter to Ben Stiller regarding the movie Tropic Thunder and the phrase used in the show that has all of the disability community in an uproar.

Ben Stiller more than likely loves the publicity that his derogatory comment has stirred up. He obviously doesn’t “get” it. However, I feel as though if we all pass this message along, perhaps even if
Ben Stiller (and all those involved with the movie) do not care who they have hurt, perhaps this message will get out to the public more that it is, after all, the PUBLIC in which we are concerned.

So, if you have a blog, please post this on it! If you don’t have one, then at least email it to everyone!

An Open Letter to Mr. Stiller,

Dear Mr. Stiller,

You hurt me today. Personally. I am writing to protest your action against me, I am writing to hold you accountable. Not that I imagine you care, but I wish to explain myself to you.

This afternoon I stopped at a local mall to do some shopping, I wanted to pick up a birthday gift or two for a friend. After shopping I went to the food court to have lunch. Food courts are wonderful places. One can dine on Mexican whilst one’s partner dines on Thai - they are places of such diversity. Around me were representatives from many nations, colours and creeds. Around me were those with varying faces, varying languages and varying abilities. I sat in my wheelchair, across the way from me was a young mother with a child with Down Syndrome, over there was a college kid dripping big words from the corner of his mouth. We were an ecclectic bunch, we were.

A skinny girl and a chunky boy with long hair arrived alongside a geeky friend. They were clearly in a playful mood, suddenly one said to the other, “There you go, you went full retard.” My heart stopped. It was the first time I’d heard the phrase spoken in common parlance. The first time, the phrase you wrote, you created, you crafted, was spoken in my presence. I cannot tell you how much that phrase hurt me. I cannot describe to you the look of pain on the face of the woman who’s child sat with her. A child, thankfully, not yet old enough to understand the meanness of that statement. A child simple by age who will grow complex with disability.

You hurt me a second time today, Mr. Stiller. I am writing to tell you, to hold you responsible. I arrived home and saw on a website that it is now possible to buy tee shirts with the phrase ‘full retard’ on it. You are responsible for this Mr. Stiller, you wrote those words, you chose those words, you went public with those words. It is you, and only you, who must bear the consequences for your actions.

There are parents, Mr. Stiller, who have to send their children into schools in only a few weeks. Hallways have never been welcoming places to those with differences - even so, those hallways are now even more dangerous than they were when they were abandoned for summer play. A new phrase will tickle the fancy of the privileged and scar the selves of the different. ‘Full retard,’ this is your creation. One you are no doubt proud of.

But I read interviews with you on the web. Interviews that explain that I ‘don’t get it’ that the humour is about shallow, self absorbed actors, not about people with disabilities. Mr. Stiller, I submit to you that your reaction, your denial, in the face of reasonable protest, reasonable requests and reasonable explanation could only be the reaction of a shallow, self absorbed actor. A person that cannot see beyond his need to express to the need of others to be safe. A person that cannot understand protest as anything other than hysterics.

I tried to find a way to contact you, to write you personally, to tell you of the pain I felt today, of the pain I fear tomorrow, and of the concerns of millions of parents, millions of people with intellectual disabilities. I wanted to tell you that you may make a few people laugh for a few hours but you will undoubtedly cause many more hours of pain and many more tears to be shed. But as I could find no way to contact you, I resort to this, my blog. I hope that if there are truly only six degrees of separation - that those six between you and I - will get this to you.

Years ago, Mr. Stiller, I met a man with Down Syndrome who was in his late 30’s. I met with him because he would no longer leave his house. He abandoned his work (yes, he held a job), he abandoned his friends (yes, he had friends), he abandoned everything he loved and enjoyed in the community. Why? Because he had decided that the world was a cruel place. That he no longer wanted to walk the mean streets. That he never wanted to be called a ‘tard again. He had had enough. He would stay in and stay safe.

That was the world before you came into it. It was already bad. But now it is worse. Much worse.

Tropic Thunder will make a lot of money, I’m sure. Box office and momentary popularity is the goal, is it not? It is to shallow, self absorbed actors, so I assume it is to you as well.

Godspeed,

Dave Hingsburger

Everyone has a story and I am thoroughly enjoying this glimpse into so many people’s lives! I think it is important to let others know that having a child with Down syndrome, mosaic Down syndrome or any special need for that matter, is not the end of the world! It is just the beginning to a new journey in life!

So, today, in my search for a story, I came to the Shelly’s family. Her blog “Embracing Life as a Household of 6″ will give you the smile you have been looking for! I think her main picture of her family truly says a thousand words about how they are doing!

And, today was the perfect day to include Shelly’s story! Because in today’s blog she describes why she adopted TWO boys with Down syndrome.

Why 2

I often get asked why we adopted not one but 2 boys with Down syndrome. There are a lot of reasons actually, the main one being that this is how God led us to add to our family. But, another reason we first considered adopting 2 was because we believed they could learn and grow together and hopefully grow up to be the best of friends. One thing I didn’t really think about at the time was that they would teach each other. And, I really didn’t think we’d see it this early. But, much to my surprise and delight, that is what’s happening. They are not only learning from their siblings, they are learning from each other.

One of Grifyn’s favorite signs(and words to say) is “shoes”. He loves putting his shoes on, he loves watching other people putting there shoes on, and he will often point to people shoes as if he’s noticing them for the first time and say “shoes” along with the sign. Yesterday, for whatever reason(I honestly don’t know what prompted it)while I was putting Xander’s shoes on him, Grifyn decided that Xander needed to learn to sign “shoes”. Grifyn got Xander’s attention and said “shoes” while doing the sign. When Xander looked away, he patted him to get his attention and repeated “shoes” along with the sign. He did this over and over about 5 times. Xander finally got that thoughtful look on his face and he looked right at Grifyn, grinned really big and signed “shoes”!!! He did it several times and Grifyn was so excited. He clapped for Xander and then said “Momma, shoes” and pointed to Xander….he was telling me that Xander could sign “shoes”! It was such a great moment. One of those times I wish I had a video camera permanently strapped to me to capture the moment. And, just to prove it wasn’t a fluke, later in the day when we were getting ready to go, we walked by the shoe rack(we keep it by the back door) and Xander looked at the shoes and did the sign!
Grifyn has also taught Xander to do something fun. Grifyn loves to flip.

Here’s Grifyn and Zoie when they tried to flip while facing each other…it ended in a crash!

Usually, when all this flipping is going on, Xander finds himself a safe area of the floor to sit and watch(or he doesn’t pay attention to them at all). But last night, Xander decided he wanted to join in the fun. He crawled over to Robert and pulled up. Then he twisted until Robert helped him turn around. And then he fell over and caught himself with his arms. He never catches himself when he falls, so that by itself was unusual. Robert, in typical daddy fashion, says “uh-oh, you fell over” and usually if Xander falls over, he starts crying. But, he wasn’t crying. He was rocking forward. I asked Robert if he thought maybe Xander was trying to flip. So Robert pushed him over. Sure enough, Xander laughed the loudest laugh and instantly rolled onto his bottom and scooted back to his daddy for more. He flipped and flipped and flipped.

And to think that some people look at me like I’m crazy because we chose 2. They just don’t know what they’re missing!

That is just the best story!!! Thanks so much Shelly for sharing it with us! Your children are beautiful and through your words and pictures, you are letting the world know that having a child with Down syndrome is a wonderful journey! So much….that you chose two!