Hi! My name is Sveta Nagaeva. Today is World Down Syndrome Day, and I have drawn a short comic strip for you.
My son Timur has Down syndrome. This is no secret to anyone, especially for those who see him in person or in a photo. You can’t hide Down syndrome.
Very often Timur is identified precisely in terms of this syndrome — not as Timur, who likes drawing, pasta and ice cream. Naturally, Down syndrome is a part of our life, because Timur has it. But Timur is just a human being first of all, my favorite person. It’s a shame when people call him “(a) Down.” It sounds like an insult, and usually people pronounce the word with this strange intonation.
When Timur and I ride the subway, we usually draw. People often look askance at us, because Timur speaks quite unintelligibly for his age. I’m already used to the sidelong glances, but I would rather not get used to them.
I am an animated film director — I make cartoons — and I draw pictures for books and write texts. I have published several children’s books, including ChromoSonya, Forever?, Poisoned Words, BO Is for Lunch Today: How Tolya Ate Cougar, Matics, Valentina’s Dream, The Tail Is What Counts, and Pasha the Turtle Goes to School.
I would be glad if from now on when you say “Down” you would remember Dr. John Langdon Haydon Down, who lived in England in the nineteenth century and was the first to describe the genetic condition known today as Down syndrome.
P.S. The doctor’s surname is spelled the same as the English word “down” (meaning, “from a higher to a lower point”) resulting in the popular misconception that Down syndrome is mental retardation. In fact, the syndrome was named that in 1965 solely in honor of the doctor, with no further connotations.
Thank you for reading!
Sveta Nagaeva, filmmaker and artist
Source: Takie Dela emailed newsletter, 21 March 2023, as replicated here. Translated by Thomas H. Campbell