Why We Need ‘Useless’ People
My daughter Penny is in the fifth grade. She just went away for the weekend with her best friend and her family for the first time. She wears glasses. She feels nervous around dogs. She loves reading and spelling and recently asked her Prayer Buddy at church to pray for her about learning how to add fractions. She is responsible, smart, talented, and loving. She also has Down syndrome.
Today is World Down Syndrome Day, a day to celebrate the approximately six million children and adults around the globe who have Down syndrome (also known as trisomy 21). Any website or book devoted to this topic lists a set of physical features, medical concerns, and potential disabilities common among people with Down syndrome, but it is hard for me to think in these generalities anymore. Rather, I am drawn to portraits of people with Down syndrome that demonstrate their distinctive traits. I love reading stories about their different interests, abilities, and friendships. And yet most people in our world still see Down syndrome as something both monolithic and negative—a condition to be eradicated rather than a group of individuals to be welcomed and loved.
Historically, people with Down syndrome were pushed to the margins of our society through institutionalization. In more recent years, with the advent of prenatal screening tests that indicate the likelihood of trisomy 21 in fetuses, more and more women have chosen to pursue those tests and, in many cases, to terminate pregnancies accordingly. ...1