A fertile revolution challenging the status quo carved the social landscape of the 1960s. The events that had us riveted to the TV mirrored another one experienced in my childhood home, albeit one with a quieter face. In 1966, My youngest brother was born with what was called Mongoloidism. Mental retardation wasn’t cause for marches on the street. It was hush-hush news.
The scientific explanation for Down syndrome echoes as a fait accompli: A genetic abnormality occurs in mitosis with an additional 21st chromosome, and this accounts for an array of intellectual and developmental challenges. As a kid that meant little, beguiled as I was by the poem my mother had placed next to my brother’s crib: A meeting was held far from the earth. It’s time again for another birth, said the angels to God above. This child will need much love.
I was in the second grade when Joe was born. My parents didn’t learn of his diagnosis for months—after all these babies had long been sent to institutions and forgotten. But it was the ‘60s; the times were changing; Joe came home to be with us—two brothers and two sisters. Still, I noticed how my father, a special agent for the FBI, started smoking more cigarettes at night as my mother shed tears in the privacy of our living room. My emotions went underground until my teacher, a concerned nun, phoned home one night. She asked my mother why I had become so sad.
Her phone call instigated what became the first, of many, Official Conlon Family Meetings, presided over by my mother. We had reached the switchback going from Life Before Joe to Life With Joe: My brother’s birth was considered by many a “tragedy.” Our mission, if we chose to accept it, was to discover what the tragedy masked with instinct as our only guide.
I don’t want to romanticize the landscape of “intellectual disability.” Such often-called “accidents of nature” can cause heartbreak. The boy you envisioned as a quarterback can’t tie his shoelaces until age ten. The girl who might become a rock star instead boards the bus for special school. Opportunities have widened for people like Joe. Still, these children are paradigm busters. You don’t hear about them in wedding vows. And mothers and fathers who do devote their lives to raising them worry about what will happen when parents are gone.
All I know is that back then, I was Joe’s sister. Sister of Joe, S-O-J, the sister who helped him brush his teeth and get into his PJs; who took him trick-or-treating; who cheered when he ran, very slowly, in track and field at the Special Olympics. Voted Most Quiet in the eighth grade, I was the “pathologically shy” girl and he the “severely retarded” boy. We were a team.
I learned to understand Joe by following his eyes and lips, interpreting his one-syllable, often indecipherable utterances using intuition, pantomime and, later, sign language. I discovered he could remember words if I sang him songs, so I’d play the piano and sing Sunshine on My Shoulders or It’s a Small World then pause. He’d reach for the missing word as if it were a star from the sky.
Plagued by my own shyness, I watched as Joe scattered joy. After school he’d stand on our corner sidewalk and wave HELLO! to every passing car. The drivers, coming home from work, might crack a smile, some rolling down their window and waving hi back to the Down syndrome boy. Joe approached people in restaurants, the super market, ballparks, and church, extending his eager handshake and uttering his clumsy hello. Nobody was a stranger.
My father the special agent was a gravely quiet and sometimes cynical man, but he fell in love with my brother—you might say he became obsessed with Joe—taking him for ice cream cones, or to the local playground so Joe could drive his motorized go cart. After biting into his sandwich one day, my father quipped that normal people were really the retarded ones. Perhaps his work in the shadowy underworld shaped his sentiment. But I could decipher my father’s words, too: Joe annihilated the walls we “normals” spent our lives constructing. Joe connected us to our hearts and taught us how to live in the moment.
After all these years, my parents long gone, Joe and I, still sing songs together even though we live 1000 miles apart. I call him on the phone and ask:
Okay! “Sunshine on my shoulders makes me…”
Even as our present day landscape reflects so many social clashes and the ever-pervasive fear of the other, I am grateful for the lesson I learned from Joe: that despite our vulnerabilities, or maybe because of them, the world needs us, you know, we so-called normal ones, to scatter joy, to reach out, and maybe offer our own version of a clumsy, hello.