In her gut-wrenching piece—a masterpiece of thoughtful longform journalism—Jennifer Senior profiles her aunt Adele, a woman eventually diagnosed with Coffin-Siris syndrome 12 after being institutionalized for decades. Senior attempts to understand the trauma Adele and her family suffered after being deprived of one another based on medical advice considered best at the time.
I was 12 when I learned. My mother and I were sitting at the kitchen table when I wondered aloud what I’d do if I ever had a disabled child. This provided her with an opening.
Her name is Adele.
My grandmother told my mother that she instantly knew something was different when Adele was born. Her cry wasn’t like other babies’. She was inconsolable, had to be carried everywhere. Her family doctor said nonsense, Adele was fine. For an entire year, he maintained that she was fine, even though, at the age of 1, she couldn’t hold a bottle and didn’t respond to the stimuli that other toddlers do. I can’t imagine what this casual brush-off must have done to my grandmother, who knew, in some back cavern of her heart, that her daughter was not the same as other children. But it was 1952, the summer that Adele turned 1. What male doctor took a working-class woman without a college education seriously in 1952?
Only when my mother and her family went to the Catskills that same summer did a doctor finally offer a very different diagnosis. My grandmother had gone to see this local fellow not because Adele was sick, but because she was; Adele had merely come along. But whatever ailed my grandmother didn’t capture this man’s attention. Her daughter did. He took one look at her and demanded to know whether my aunt was getting the care she required.
In March of 1953, my grandparents took Adele, all of 21 months, to Willowbrook State School. It would be many years before I learned exactly what that name meant, years before I learned what kind of gothic mansion of horrors it was. And my mother, who didn’t know how to explain what on earth had happened, began telling people that she was an only child.
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