Global Down Syndrome

Michelle and daughter Sophia Cover photo by Michael Buckner/Variety/Shutterstock The Global Down Syndrome Foundation is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. from the EDITOR WELCOME TO DOWN SYNDROME WORLD™, A PUBLICATION OF THE GLOBAL DOWN SYNDROME FOUNDATION A ROSE BY any other name would smell as sweet. Or did Shakespeare simply have it wrong? From the time I was given the prenatal diagnosis that my fabulous/ beautiful/trying teenager Sophia would have Down syndrome, I had my figurative ears boxed many times. I learned people-first language very quickly and what to call Down syndrome and what not to call or describe someone who has Down syndrome. In fact, I disliked "disability" so much that Global adopted the term "differently-abled." Clearly, when a term moves from standard to derogatory (I can't imagine anyone would want to go back to the official terms, "imbecile" or "moron," used in the late 19th and early 20th centuries), it is appropriate for a community to change that word to something inoffensive. We should not only nix the offensive, but also use words that describe our population with some semblance of a positive connotation. Is it coincidence that with this demand for positive change in language, there has also been a positive change in attitudes and inclusion for people who are differently-abled? We would argue language has made a difference and that our success has been a complex mix of many areas of advocacy, leading to increased acceptance and equity. As you can see from our amazing cover, Miley Cyrus is a fan of Jamie Brewer, who is better known for her break-out roles in American Horror Story than for her diagnosis. And the issues people with Down syndrome are dealing with — aging, sibling care, mental health — are issues that everyone is dealing with (albeit the early aging and higher odds of Alzheimer's disease is a hard hand to be dealt). We have bipartisan support for improved research and medical care for people with Down syndrome, as evidenced by Sen. Roy Blunt (R-MO) and Sen. Patty Murray (D-WA), built on the back of visionary researchers such as Roger Reeves, Ph.D. We also have hero advocates such as Emmanuel Joseph Bishop, Jumana Odeh, M.D., and Michael Okiro-Emadit, whom we are proud to highlight in this issue. There are, of course, updated technical terms describing people with Down syndrome that you can find on the websites of the National Institutes of Health, Centers for Disease Control and Prevention, WebMD, Mayo Clinic, National Down Syndrome Congress, National Down Syndrome Society, and LuMind Research Down Syndrome Foundation: chromosomal disorder/condition/syndrome, birth defect, intellectual and developmental disability, and genetic disorder/variation. At this moment, these are the accurate "definitions." However, at the end of the day, we at Global believe the best thing to call a person with Down syndrome IS THEIR NAME. There is nothing more sweet-sounding than that! MICHELLE SIE WHITTEN PRESIDENT & CEO, GLOBAL DOWN SYNDROME FOUNDATION PUBLISHER/EDITOR, DOWN SYNDROME WORLD MICHELLE SIE WHITTEN Publisher and Editor ELLEN R. MEDNICK Managing Editor CONTRIBUTORS TOM BLUMENTHAL, PH.D. Executive Director Linda Crnic Institute for Down Syndrome JOAQUÍN ESPINOSA, PH.D. Associate Director for Science Linda Crnic Institute for Down Syndrome TAYLOR SHIELDS Contributing Editor NICOLE TSCHETTER Contributing W riter JULIE SMITH Content Manager MEGAN LINDSTROM Proofreader MARISA CUCUZZELLA Proofreader GLOBALDOWNSYNDROME.ORG 3

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