Connecting Families
October 24, 2019
Today is October 24th and we are nearing the end of Down Syndrome Awareness Month. With “awareness,” as it is with many things, the devil is in the details. Are we raising awareness of what Down syndrome means as a medical diagnosis? Are we raising awareness of the potential of individuals who live with Down syndrome? Or, are we raising awareness of the barriers people with Down syndrome face? What do we want the world to know about Down syndrome, and what do we in the Down syndrome community want to know?
“What shall we do for Awareness Month?” is a more complicated question than it first appears to be, and the answer that seems most obvious is often determined by where you are in your journey with Down syndrome. Parents of young children want to share how adorable their little ones are, parents of older children focus on the “facts” and the potential of their children. The activists among us rally our community to break down barriers and demand acceptance.
Sometimes, I wonder if we shouldn’t step away from all the activity during Down Syndrome Awareness Month and, instead, take a moment to check-in with our loved one who has Down syndrome — how’s it feeling to them right now? Where are they on THEIR journey with Down syndrome? That answer, perhaps, is the best guide to what kind of awareness we should raise.
DS ACT has been offering a program for the last two years to teens and young adults with Down syndrome called the Advocacy Avengers. Self-named, the group is near and dear to my heart. It is a free-wheeling, high-energy exploration of what it means to be a self-advocate. The Avengers select a theme each year that guides discussion topics. Volunteers and DS ACT staff help build out the activities and facilitate meetings. It has been wonderful to watch the group grow.
One of our Avengers, Chelsea Bailey, is a senior in high school this year. Preparing to take adulthood by storm, she is working, she is on the swim team at her high school and she has started writing a blog about growing up with Down syndrome, called A Little Bit Different, A Lot the Same. I encourage you to check out her take on what it feels like to have Down syndrome, and what awareness is about. Chelsea will be sharing her blog here, periodically, too.
— Shanon McCormick
Shanon McCormick is the executive director of the Down Syndrome Association of Connecticut. She can be reached at smccormick@mydsact.org.