Food for Thought
A few months after Henry was born, I received a call from our county health office. A nurse was calling to tell me that a combination of Henry’s disability and our low income made us eligible for food stamps. She spoke in a hushed whisper, as though she had stumbled into a wake: We hear you’ve had an adverse birth outcome. “A what?” I asked. It took me a few awkward seconds to realize she was talking about my son. The nurse hadn’t bothered to use his name or even offer a polite Congratulations on the new baby! She had reduced him to an outcome, a thing, totally devoid of humanity because of his disability.
“I don’t think I can go in,” I told Ian. We could see the birthing center, on the fifth floor of the hospital, from the parking lot. It was seven days after John’s unexpected, extremely early arrival, and I was leaving emotional shreds of myself all over the county as we made our daily drive up and down the New York State Thruway from our home to the NICU. There, locked away from rooms where real people, with normal babies, bore and laughed and kissed and nursed, my son took sips of air from oxygen tubes while another tube tried to clear an air pocket from around his lungs. He had air in all the wrong places and a hole in his heart and had never yet eaten anything not given by IV. The NICU—short for Neonatal Intensive Care Unit, the place for undercooked or sick babies (ours was both)—dragged on me like a small planet with its own gravitational pull, a force nonexistent for people whose babies had been born full-term and healthy.
Can other people’s expectations of you alter what you can do physically? Alix Spiegel and Lulu Miller of NPR’s new radio show and podcast Invisibilia investigate that question – specifically, they look into something that sounds impossible: if people’s expectations can change whether a blind man can see.
I am so grateful for the response we’ve already received for our Lift for Aidan fundraiser. To contribute, CLICK HERE.