Why I Celebrate World Down Syndrome Day
I have been writing about my brother, Robb, (who has autism and Down syndrome) for almost five years now, and I almost always get the same reaction. People tell me how helpful I am with my brother, they ask me if I will work with people with Down syndrome and other disabilities when I grow up, they commend how my family overcomes obstacles. These are all valid points, but they are all irrelevant to the purpose of why I write. Robb and I are siblings. We love each other. I am lucky to have Robb because he is my role model, my rock. He is the one who gives me a hug every time he gets home from school. He is the one who will come and listen to me while I practice a new song on the piano over and over. He signs to me when we are swimming at Special Olympics practice, even in the deep end, just to show me how happy he is.
I write to address and contradict the idea of “suffering” and “disappointment” many people associate with disabilities. I want to stop people from ending my brother’s accomplishments with “for a boy with disabilities.”
I would be lying if I said that Robb’s differences do not profoundly shape our lives. They have changed the lens through which he sees, I see, and they have impacted most aspects of our relationship and how we communicate. They are the reason we sign, the reason when he gets upset, I often cannot understand, but they are also the reason we get to speak in our own special language, the reason I can understand the subtle jokes he makes, and the reason that I am aware of World Down Syndrome Day in the first place.
I love World Down Syndrome Day because we get to celebrate all aspects of the Down Syndrome community which always recognizes the obstacles so many people with Down Syndrome face, but also includes people’s different interests and achievements. John Lee Cronin, a man with Down Syndrome, started John’s Crazy Socks with his father which has expanded to offer over 1,200 different sock designs. Madeline Stuart has become the first professional model with Down Syndrome at 20. Tim Harris, another person with Down Syndrome started his own restaurant in his early 20s. And no one ends these accomplishments with “for someone with Down Syndrome.”
Robb will reach his personal goals, he will live a fulfilling life and he will be happy. Today we also celebrate the different goals of people within the Down Syndrome community and the value of each of them.
Even if my words change just one person, that is one less person to continue the suppression of people in the Down Syndrome and wider disability community. It is one less person who will tell my mother they do not want to sit next my brother “because he is gross.” It is one less person who will tell me that my close relationship with my brother is a sacrifice I am making. It is one less person to stare instead of smile when my family enters a restaurant.
World Down Syndrome Day is a movement to change people’s perception on Down syndrome, and it continues to expand and strengthen daily. I am so happy and privileged that my family gets to help share that message.
So without further ado… Happy World Down Syndrome Day!
Getty image by GaryRadler