Jennifer Senior racconta (link alternativo) sull’Atlantic come all’età di dodici anni venne a sapere di avere una zia di nome Adele, zia di cui per anni non seppe nulla.

Adele fu “ricoverata” in un istituto per disabili cognitivi ed intellettuali a soli ventun mesi, allontanata per sempre dalla famiglia e dalla società. Senior ripercorre la storia di questo internamento: dalla diagnosi di microcefalia (oggi attribuita alla sindrome Coffin-Siris del sottotipo 12) di Adele, alle ripetute raccomandazioni di vari medici di ricoverare la bambina in un centro per disabili, alla madre dell’autrice che un giorno vide i suoi genitori rientrare senza la sorella minore e chiedeva incessantemente quando questa sarebbe tornata a casa, ai nonni che si affannavano a comprare regali di Natale nonostante fossero ebrei, fino alla recente decisione dell’autrice e della madre di visitare Adele nella sua casa-famiglia e scoprire di più sul suo passato.

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.

La scelta della famiglia dell’autrice era molto comune all’epoca: i figli disabili erano spesso ricoverati e nascosti agli occhi degli estranei e della famiglia stessa.

With time, we would learn the terrible toll that institutionalization took on those individuals. But they weren’t the only ones who paid a price, Fink argues. So did their parents, their siblings, future generations. In hiding our disabled relations, she writes in her book All Our Families, we as a culture came to view disability “as an individual trauma to a singular family, rather than a common, collective, and normal experience of all families.”

L’istituto in cui Adele fu ricoverata a ventun mesi era il famoso istituto Willowbrook, che fu raccontato da Geraldo Rivera in un documentario intitolato Willowbrook: the last great disgrace:

What he found—and what his viewers saw—was the kind of suffering one associates with early-Renaissance depictions of hell. The room was dark and bare. Thee children were naked, wailing, and rocking on the floor. Some were caked in their own feces. “How can I tell you about the way it smelled?” Rivera asked. “It smelled of filth, it smelled of disease, and it smelled of death.” He went on to interview Wilkins, who made it clear that Willowbrook wasn’t a “school” at all. “Their life is just hours and hours of endless nothing to do,” he said of the patients, adding that 100 percent of them contracted hepatitis within the first six months of moving in.  Actually, doctors were deliberately giving some of those children hepatitis. Even into the 1970s, the intellectually disabled were the subjects of government-funded medical experiments.

Tonya Mosley intervista l’autrice per il podcast NPR Fresh Air.