2016 The Word

Have you ever picked a word for the New Year?

I went to an advocacy event a few years ago, and as part of the decompressing and debriefing, we created collages and chose one word for our next year. That was 2014 and I chose the word: Create.

2014: Create

It calmed me when I fretted about things like, oh say, rejections from editors. (Don’t worry, just create more, I told myself.) More importantly, it was the answer when I wondered, “What should I do next? What should I do

Response to “Those Mongols”

“Those Mongols”

The recently publicized quote from a UK public official using the term “mongols” as a descriptor of people with Down syndrome reminded me of the reason I won’t be seeing David Sedaris perform live when he comes through town next year. 

In his book, Naked, David Sedaris tells us about his time as a volunteer at a mental institution during his youth, including this anecdote:

“The day proceeded, everything from a mongoloid teenager with an ingrown toenail to a self-proclaimed swami who had fashioned himself a turban of urine-soaked towels.

Down Syndrome & People First Language

Today's lesson is about language and words. #1 People First Language

Would you believe I didn't even know about how effective and awesome "People First Language" was until about two years ago when my uncle explained it to me? I know - - - seriously!

So, the specific example at hand is this: a person is not a Downs. A mother doesn't give birth to a Downs baby.

No, instead consider that child may be born with Down syndrome. My son has Down syndrome. He is not a Downs.

Do you see the difference? It's subtle. Again, I admit, this was pointed out to me. Thankfully, because it really makes a world of difference. And, like a former smoker, I've become pretty vigilant about it.

Celebrating #WDSD2014 and The Good Life Tour


World Down Syndrome Day is a big deal.

In 2011, For the first time I witnessed a large and influential set of worlddownsyndromedaypeople speaking in favor of my son’s rights and discussing the path to improving his health and longevity. It was the first time I saw groups of self-advocates standing side-by-side with international decision makers. I sat watched all of this from home via the UN website.  So much information, my brain practically seeped from my ears. 

This year’s focus is on: “Health and Wellbeing – Access