World Down Syndrome Congress: Setting a Global Scene

The Global Down Syndrome Foundation’s Director of Operations and Government Affairs, Michelle Livingston, is in South Africa for the World Down Syndrome Congress this week. Over the next several days, she’ll provide updates on the conference, the people, the research and how it all relates to the global human rights of people with Down syndrome.

Dear Readers,

I am fortunate to be representing the Global Down Syndrome Foundation this week at the World Down Syndrome Congress in Cape Town, South Africa, along with my husband, David, and Patti McVay, Education Director at the Linda Crnic Institute for Down Syndrome. We are so excited to have the opportunity to network, tell others about the great work we are doing at Global, and above all, LEARN. We have so many questions: What kind of medical care do people with Down syndrome receive? What research is being done? What are the beliefs about Down syndrome in the rest of the world? We will also be visiting some of the local medical clinics, and I am looking forward to sharing what we learn, good and bad, with our U.S. community. The conference starts Wednesday, and we will be posting updates throughout the week.

Down syndrome does not discriminate based on race, nationality, socioeconomic status, or religion. As I sit down to our first breakfast here, I am happily reminded of this fact. Next to us are Americans, across is an English family, and a little to our right is an Indian family; all have a family member with Down syndrome at their table. Like me, they are thrilled with the massive breakfast buffet.

At lunch out on the Harbor, we run into a Dutch mother and her beautiful adult daughter, Ninka, who happens to have Down syndrome. Ninka speaks both Dutch and English fluently and lived in Seattle for several years. We visit a little, and commiserate about our fear of heights and hesitancy to get on the local Ferris wheel despite the great views. Her mother, Hilde, tells me a little about Holland’s education system and the lack of inclusion.  Their sushi arrives, and David and I leave them to their lunch, but I can’t wait to see them again and learn more throughout the week.

“A person with Ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good, based from a proper self-assurance that comes from knowing that he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed.” — Desmond Tutu

In South Africa (and many other African countries), there is a philosophy known as Ubuntu, meaning “I am what I am because of who we all are.” Desmond Tutu described it best:

“A person with Ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good, based from a proper self-assurance that comes from knowing that he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed.”

People with Down syndrome bless our world with a wonderful diversity. Our commitment to ensuring basic human and civil rights for all people is reflected in how well we as a society — not just in our neighborhoods, our cities or our countries, but throughout the world — respect, embrace and and promote that diversity. We can use events like the World Down Syndrome Congress to further that message around the globe.

Totsiens for now!

Michelle Livingston

Director of Operations and Government Affairs

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