World Down Syndrome Day, 3-21-09

This is the third year since the foundation of WDS Day and feels very critical in light of the recent Obama situation. It seems even more critical to continue to get the word out about the civil rights of the special needs population. So much has happened already this year that makes me feel like our efforts in raising awareness are just not making the progress they should. How else do you explain how a negative movie like Tropic Thunder can be nominated for an Oscar and win other awards? In spite of all the media attention that Sarah and Trigg Palin brought, people still do not get it!

I know that others before me have made huge strides. At least our children are not still put in institutions in the US like they are in other countries. At least our children have been given the right to a public education. At least our children are living healthier, longer lives thanks to medical advances. At least our children are growing into adulthood with marketable skills and gain tax-paying jobs.

But it's not enough.

I want more for my son and the rest of the special needs population. I want equality for them. I want respect for their abilities. I want happiness for them.

I don't want them treated like the butt of a joke. I don't want part of their medical diagnosis used as an insult.

When I first heard of WDS Day, I wasn't sure what I could do to help promote awareness. The first year, I organized a Dress Up for Down Syndrome Day fundraiser and was happy with the success of it. The funds I raised were used to buy copies of Gifts to give to doctors and libraries in my community. I also made a point to advocate where Sean spent his time- in his preschool. I bought a board book featuring children with Down syndrome and donated it to his class in his honor. I have continued this tradition each year. This year we sent a copy of I'm Ben and I've Got a Secret. I hope that by giving Sean and his classmates stories and images of kids like him will teach them at a young age that diversity is good.

New this year is a campaign to stop the use of the R-Word.



I regretfully admit that in my early adult years, I used this word in a joking manner amongst friends. I used it interchangeably with words like "stupid" or "dumb" in reference to things or people that bothered me. I didn't know better. It didn't occur to me how offensive this was. When Sean was born, obviously I became very sensitive to it. The light bulb was finally lit and I could see what it meant from another perspective. I find the misuse of this word utterly offensive and crude. I will most certainly raise my children not to use it or tolerate it's use.

I urge you to do the same. We have got to continue to make progress. Just as Sean struggles each day as his milestones are met with a million inchstones, this society must continue to make progress against hatred, ignorance and indifference towards differently-abled people. Let's all think before we speak. We can make a difference, one person at a time.