Down Syndrome and Social Media: Will Visibility Save Lives?
Most of us by now have our favorite social-media stars; mine are an irrepressible pair of youngsters named Ollie and Cameron, identical twins who have Down syndrome, born March 2013 in Dundee. They’re basically my favorite Scotsmen, excepting David Tennant. Their mum’s posts of the boys’ adventures never fail to make my day (and that of their quarter-million followers). In one, the guys are playfully subjected to a quick test of self-restraint, the “chocolate challenge” that went viral last year, in which parents put tempting treats in front of their kids, leave the room, and secretly record the results.
Ollie and Cam are electrified by the treat (they go through life with enthusiasm dialed up to 11). But they spend the next two minutes alternately rhapsodizing about chocolate and taking turns shoring up one another’s resolve (“Have patience!”) By the time Mum returns, they’ve passed the test.
You can’t watch this without sharing their mother’s evident delight in her sons. They’ve got more joy in life than a winning movie star on Oscar night. More self-restraint than a recent president of the United States. More determination than—well, most of us. Yet parents are still routinely counseled to destroy a child from this blessed tribe before birth—not given a balanced or updated picture of the challenges of raising a son or daughter with Down. This is personal for me, because the mere possibility of Down syndrome could have ended my life before I was born.
The man who offered to eliminate the risk—to eliminate me—was the doctor who delivered me, a prestigious Park Avenue Ob/Gyn who supposedly counted the Rockefellers among his clientele. My mother was considered lucky to have been his patient. Pregnant for the first time at 44, and with a cousin who had Down, she was counseled that her child could turn out to be “a Mongoloid idiot.” “He knew I was a Catholic,” she recalled, “and he offered to give me hormones to ‘bring on my period’ before even giving me the pregnancy test … but I knew damn well I was expecting.” (So that’s how women with Rockefeller-level status in 1957 managed not to wind up with unwanted babies.) She said no, and chose life for me.
Given the intimidating paternalism and ableism of the time, my mother’s experience wasn’t surprising. People with intellectual disabilities were still shunted to institutions, not nurtured with early intervention and therapy. The diagnosis seemed like a tragedy. But today—in Ollie and Cam’s world—this medical bias, unconscionably, goes on and on. Decades after my life hung in the balance, doctors are still telling parents that their child with an extra chromosome will never walk or talk or have a “life worth living” (as defined, presumably, by the physician). Parents report pressure to abort at an individual and societal level.
I “like” and share Ollie and Cam’s shenanigans and milestones on Facebook because they delight and distract me, and because they help chip away at the preposterous notion that we can decide before birth whose lives are worth living. Before my own birth, let’s say it for what it is: A doctor wanted to kill me because he thought I’d be like Ollie and Cam. I’d be honored to be like them: brave, vibrant, mischievous. I might even be able to resist chocolate for two full minutes, an ability of theirs that I do not yet share.
Brenda L. Becker is a writer and editor in Brooklyn, New York.