Rather than assigning him a role to play, you have to give him space and watch how he fills it.
October is Down Syndrome Awareness Month. As a mom to a 9-year-old boy with Down syndrome I struggle a bit knowing what I should make people aware of. In the past I’ve tried to show Bobby’s dimensionality so people learn that he is far more than a diagnosis. However, over the years I have developed much less patience with the idea that people must demonstrate their humanity before being treated with dignity.
Lest I be too self-righteous let me first of all admit that I have often been guilty of treating other people poorly based upon my own biases. But watching how the world treats my son and how he interacts in return has taught me to do better, not just with people with Down syndrome or people with disabilities, but hopefully with most everyone.
Make your world big: Before Bobby was born my wife and I chose one of the most diverse neighborhoods in Chicago as our home. I grew up in a small Midwestern town with almost no diversity—it was stifling to me as a lesbian and I didn’t want that for my child. Uptown is home to families across the income spectrum; it’s minority white with a large African American population as well as substantial numbers of Hispanic, Asian, and African immigrants. Living there as a white, middle class citizen, I was forced to confront my own racism and classism.
I had grown up believing that many poor minorities were predators, but once I lived in their midst I realized that they had much more to fear from white privilege than I had to fear from them. Multiple people were murdered within a block of my home, but I still felt safe taking my son for evening walks. Supposedly, the city councilwoman made deals with gangs, promising to leave them alone as long as the mostly white homeowners were left out of the crossfire. Innocent poor people might be acceptable casualties but not people with political capital.
Bobby’s Down syndrome diagnosis forced me to confront the same sorts of lies that are propagated about people with disabilities. The doctor who told us that our son almost surely had Down syndrome assumed we would get an amniocentesis to confirm and then abort. He badgered my pregnant wife suggesting she go on anti-depressants, as if the health of her unborn child no longer mattered. My psychiatrist suggested we institutionalize Bobby because of the hard work involved in raising him.
I was clinically depressed about becoming a parent to a child with an intellectual disability, but part of me also knew that there was likely a huge gap between the information we were given and the reality of raising a child with Down syndrome. I believed in that gap because living in Uptown forced me to understand that our society creates myths about certain groups in order to keep them oppressed. These fabrications depend on distance—once you live in community with people you realize where you’ve allowed yourself to be misled.
Two years ago we moved to California in search of better social service supports for Bobby. We initially lived in an apartment complex with no racial or income diversity. The little kids who lived there stared at Bobby in horror when he went out to play. No amount of answering their questions made it better. They had already been taught to fear differences.
I contrast that to the children in Uptown. One day three little African American girls surrounded Bobby and me on the sidewalk, simultaneously asking why he looked the way he did, why he talked funny, and why he never came over to play with them. They were curious about his differences but also saw him as a potential playmate. “Different” was not a thing to fear.
Be open minded: My initial depression over Bobby’s diagnosis was based in my belief that I was going to be forever burdened with a child who wasn’t smart. Like Sisyphus endlessly pushing his rock up the hill I would forever be teaching and reteaching this child how to tie his own shoes.
The reality is that Bobby has never learned to tie his shoes and it doesn’t matter in the least. He struggles with certain physical and cognitive skills but he successfully navigates the world in his unique way.
When he was 2 he moved around the house by scooting on his butt. He was quiet and often appeared underfoot with little warning. One day after nearly tripping over him while cleaning the kitchen I carried him into an adjoining room.
“Not one foot in the kitchen until I’m done.”
Two minutes later I looked over to find that his feet were millimeters from the entry way. His arms were outstretched and waving in the air space of the kitchen. He smirked.
I laughed. This nonverbal little kid was mocking me by pushing the boundaries of my directive. He was being purposely defiant. I loved it, which is a good thing since he still often responds to me in a smart aleck way.
I’ve learned that the way society traditionally views intelligence limits people’s appreciation of Bobby. Like the rest of us, he uses the skills he has to best adapt to his environment.
If we leave our windows open during Bobby’s bath time, neighbors can hear him repeating a guttural moan as he pours water from a cup into the bathwater. He’s stimming, which is a way for him to recenter his physical and mental self after a long day. Many people recoil from Bobby’s behavior because they view it as a nonsensical act done by a person they view as problematic.
However, stimming is a close cousin of mindfulness and meditation exercises that many “normal” people pay hundreds of dollars to learn. His moans are nearly identical to the “ohms” taught by yogis. From my perspective, the fact that Bobby listens to his body and intuitively balances himself in a way that other people have to be taught is a sign of intelligence. But because he has Down syndrome it’s assumed by many to be aberrant behavior.
Like many things, stimming is normalized when it’s viewed through the proper lens. Even the more extreme forms of stimming that require redirection for the sake of safety are logical to the person performing the action. Traditionally that tends to be the focus of awareness months—teaching the general public the whys behind misunderstood behavior.
But how about this? Rather than memorizing a list of facts to accompany every human condition, instead of pushing away people who behave in a way that we find disconcerting, why not just show some humility and assume that our discomfort is based on our ignorance of the person’s needs? Why not be open to the possibility we can learn something valuable from a person with Down syndrome?
Give some space: Bobby recently participated in a non-competitive after school basketball program. He loves the game and has worked hard to learn how to dribble, pass, and shoot. Yet two sessions in he had yet to participate with the larger group.
The coach told me Bobby didn’t have the skills to play. As he and I talked I noticed that the other children were bunched together on the court, not understanding the position they’d been assigned to play. They barely dribbled the ball and never passed, their sole intent being to shoot the basketball. In other words, it was a typical group of beginners.
Bobby can do all those things. However, he gets nervous when people crowd him so the chaotic mass of 10 children in a few square feet of the court no doubt intimidated him. Moreover, the attitude of the coach boxed Bobby in—he assumed Bobby could not play instead of being open to letting Bobby’s participation unfold organically.
By way of contrast, Bobby participated in a one-week music camp over the summer. From the beginning, the staff welcomed him with open arms. No one worried that he didn’t learn all the words to the songs or that his movements were perpetually a beat behind the group. They made space for him and he in turn danced and sang with complete and infectious abandon. At the end of the session a teenaged boy who had helped Bobby thanked me for enrolling him.
“He’s awesome,” he told me.
Bobby is awesome, but you have to give him some room to show that side of himself. Rather than assigning him a role to play, you have to give him space and watch how he fills it.
No doubt, breaking out of these biases we’ve been taught since birth is difficult, but the reward is finding a lot of wonderful things in people you might have otherwise overlooked or rejected. That’s really what we should all be aware of, every month of the year.
Anne Penniston Grunsted writes about parenting, disability, and family life from her perspective as a lesbian mama. She lives in Southern California with her wife and son. Read more of her writing at annepennistongrunsted.