Raising His Son with Down Syndrome

On his day job, 44-year-old David M. Perry of Brookfield, Illinois, is a Dominican University history professor and Medieval Venice expert. After hours, he’s a disability rights journalist, with his work appearing in publications like The New York Times, Rolling Stone, The Los Angeles Times, The Atlantic, and The Washington Post. He’s also a disability rights researcher and writer of the blog, How Did We Get Into This Mess? Perry is the father of a 10-year-old son with Down syndrome.

According to the National Institutes of Health, Down syndrome “is a set of cognitive and physical symptoms resulting from having an extra chromosome 21 or an extra piece of that chromosome. It is the most common chromosomal cause of mild to moderate intellectual disabilities. People with Down syndrome also have some distinct physical features, such as a flat-looking face, and they are at risk for a number of other health conditions.”

In a telephone interview, Perry said, “My son is someone I’ve talked about a lot (in my writings). At his birth, when we first heard the news about him having Down syndrome, we were shocked and profoundly ignorant about (Down syndrome). Here I was a highly educated individual and my wife was a scientist, and neither of us knew anything about it.”

About his son, Nico, he said, “He’s amazing. As a 10-year-old boy, he’s self-contained, knows who he is, what he likes, and what he wants to do. He’s functionally nonverbal, which means he communicates all the time and in many ways, and everybody, including me, his friends, and others, find ways to communicate with him. It’s a two-way process and both parties have to do a lot of work.”

Perry described his son as a “full, complex person,” who had good and bad traits, e.g., was warm and loving, and also surly and independent, “just like most other 10-year-old boys,” he added. Perry pushed back against the notion that people with Down syndrome were always “angelic, cute, and super-sweet.” Instead, he said, his son was a full human being in all his “glorious complexity.”

Next week, Perry has volumes to say about newspaper journalists needing to do better reporting about crimes and murders committed against people with disabilities. He recently published a white paper for the Ruderman Family Foundation about the topic, and he has been finishing up a book for Beacon Press with the working title, “Disability is Not a Crime.”