MOSAIC MOMENTS

Over this past week, as a major leader in the disability advocacy community, I have worked hard to be the voice of those whom I serve.

I have read countless news reports, not because the reports were much different that the others, but because I read the comments on the reports to see what others thought about this whole Tropic Blunder.

The majority of the comments, I am sad to say, were very upsetting and quite unnerving!

One particular comment stands out in my mind.

The commenter said, “I don’t see what the big deal is about the boycott. They are just f–in (took out the actual word he wrote) RETARDS anyway! Give a RETARD a piece of candy and call them a RETARD to their face and they wont know the difference anyway! No f–in RETARD knows what the h–ll you say to them, and they don’t even know that there ARE movies!”

This upset me. The reason it upset me was because it proved to me that many people really didn’t care what they said to offend those with developmental disabilities just because they were different from themselves.

THIS is the reason for the boycott! Because people like this don’t see any big deal about saying words that hurt. And, a movie like this just encourages someone to use this word to hurt more people!

But, even though it upset me and even though it made me want to fight all the harder for this boycott to educate others of why it is important to not say the word, I was upset wearing my Advocacy Leader Hat.

As the president of International Mosaic Down Syndrome Association, I work daily (and most the time nightly) to help those with mosaic Down syndrome. In 2001 I became the president and co-founder of IMDSA because my son Tim, has mosaic Down syndrome and there was absolutely no information on mosaic Down syndrome available when he was growing up. Before IMDSA, the only information was a short sentence in a book that basically said mosaic Down syndrome is so rare, your kid probably doesn’t have it! So, as a parent, I never knew what to expect, if this or that was “normal”, and I had NO ONE to talk to who was experiencing the same things that I was going through. There was the VCU Research booklet on mosaic Down syndrome, however, I didn’t know about it and hardly anyone else knew about it at the time. So, in my quest for information for myself and my son, International Mosaic Down Syndrome Association was born.

Over the past 8 years, I have written many brochures, pamplets, and papers on mosaic Down syndrome to help others understand what it is. I have worked with researchers to get information about MDS, so that families have this information and don’t feel lost in raising their child. I have spoken to THOUSANDS of families through email, letter and phone throughout the WORLD and have done my very best to get information to them to help their child.

All of this is done with my Advocacy Leader Hat firmly in place.

Today, I was still wearing my Advocacy Leader Hat when I drove to the television news station for an interview. Yes, I had my sons with me. In fact, my mom and my grandsons were in the car waiting so that we could go on an outing. However, I was wearing, “President Hat” and not my “Mom Hat” when giving the interview.

After my piece of the interview, Tim was next and although very nervous, he made some good comments that made me very proud! Next, Garrett had his opportunity to voice his opinions on the “r” word and how he felt about it. Again, I was beaming as my junior advocates were working to get the word out.

NEWS AT 6:

We watched the interview. Garrett’s piece was cut and he wasn’t happy about that, however they did show him on the news, just not his interview. He’s 12 and although he does stand up firmly for this cause, he is still a little boy and likes to see himself on tv.

They also edited a lot of important comments that were made, however, that is what editing is all about! Such as life!

Tonight my Advocacy Leader Hat slipped off.

I began reading the comments on the news site concerning my interview. I expected to be upset by the “expected” comments. However, as I read the comments it was no longer a “general” reference. It was directed towards me. Which was fine. My Advocacy Leader Hat was still in place while I began reading the comments. It slightly tilted after the first comment. I straightened it though….after all…. I am the president of International Mosaic Down Syndrome Association. I am used to the comments by now! I have read them all week long! In fact, there have been many comments that I have heard from parents of children with developmental disabilities who have made some of those comments!

Then, I read the second comment. As I read this, my Advocacy Leader Hat began to slip again, slowly tilting it began sliding down off the to the side of my head. I tried to straighten it and bring it back up, but as it slid, my “Mom Hat” began swiftly moving up the other side.

THIS BECAME PERSONAL!

This person says he/she knows my son. And his/her “personal knowledge of Tim I know that he has been called the R-word and other negative adjectives many times, long before this movie ever existed.”

This came from a PARENT OF TEENAGERS! Not a fellow classmate when Tim was in school. Perhaps this comes from a past teacher? I don’t know.

I don’t want to know! We live in a small town and the town would get much smaller if I knew who made the comment. So, if you are reading this blog, please just never tell me who you are!

However, when an adult is aware of this kind of name-calling and thinks it is NO BIG DEAL because “people are cruel anyway”…

THIS IS WHY WE ARE HAVING THIS BOYCOTT!!!!

TO TEACH OTHERS THAT THE “R” WORD IS WRONG!!!!

And, obviously, it is taking a boycott to get the message across to everyone.

It isn’t about the MOVIE! It is about the WORD!!!

If you say RETARDED or RETARD then YOU are saying that MY SON DOESN’T MATTER!

AND

If you see someone else saying RETARDED or RETARD and YOU don’t say anything about it…. Then YOU ARE JUST AS BAD AS THE PERSON SAYING IT!

Individuals with ANY different ability have feelings, JUST LIKE EVERYONE ELSE! THE WORD IS OFFENSIVE!!! WORDS DO HURT!!

So, while my Mom Hat is still on… I have just one comment to this person who witnessed my son being bullied and teased and called names…..

You should be ashamed of yourself! You say you know Tim…. you don’t know Tim at all! You have no idea what he has gone through in his life time. You have no idea how much he has struggled to be accepted into this “community”. You have no idea what those words have done to my son! So, while you are sitting up in your house with your “perfect” teenagers, thank God that they have never been teased or bullied in school. And, when they are… I certainly hope that an adult will step in and say ENOUGH IS ENOUGH!