Reflecting On 'The Ones We Sent Away'

All of us have a fundamental desire to have a home. It's not solely about a physical space, but it encompasses that real human need to feel that we are accepted and that we belong. The comfort of being surrounded by those who genuinely understand and value us is unmatched. These relationships play a pivotal role as they offer stability and solace in our lives.

Being loved and accepted, fully and without reservation for our flaws, reinforces our sense of self-worth and connection. Such genuine understanding and connections are integral for our emotional health and overall contentment. Unfortunately for millions of neurodivergent people throughout the 20th Century (and sadly, into this one), they were denied this right to home. You see, for generations, those with intellectual disabilities, with autism, or with other neurodivergent conditions, were routinely taken from their families and warehoused in government facilities for the rest of their life.

Much of my work with the California State Council on Developmental Disabilities has been about reversing this trend - to successfully shut down these weathered institutions and to bring their residents back into the communities to which they belong. In essence, it's been about ensuring that people can come back home.

This was on my mind this week when I read Pulitzer Prize-winning writer Jennifer Senior's excellent piece in The Atlantic titled The Ones We Sent Away. In it, Senior tells the story of institutionalization and her own family. She goes on to note that not only were the disabled people whom we 'sent way' to live their lives in institutions denied a home, their families were also denied the home they could have otherwise maintained with their loved ones by their sides.

Jennifer Senior discusses her piece 'The Ones We Sent Away' on MSNBC.

"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 and 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?"

I paused for a good 10 minutes when I read those paragraphs above. Mostly because the description of Senior's aunt as an infant mirrors the notes and letters I've discovered about me as a child. In interviews about her piece, Senior notes that her family now understands that her aunt Adele was autistic - just like me, and just like millions of other people whose family faced decisions early on about "what to do".

One of these people is actor Daryl Hannah, whom you might recognize from films like Bladerunner, Splash, Kill Bill, or - my all time favorite - Steel Magnolias. When Hannah was diagnosed with autism as a child, her doctors recommended that the be institutionalized for the rest of her life. Another rubber stamp on an actual human life. Thankfully, her parents had a bit of flexibility and kept Hannah out of school for several years until they could figure out how to integrate their daughter back into the classroom and keep her at home and in her community.

In her piece, Senior continues:

"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."

The name 'Willowbrook' has become a cultural touchstone for those seeking to reform how we treat those with intellectual disabilities. As far back as the 1960s, its halls were overcrowded by thousands, its residents subjected to horrific experiments, and its conditions so degraded at its campus on Staten Island that Senator Robert F. Kennedy referred to the institution as a "snake pit".

In 1972, journalist Geraldo Rivera won a Peabody Award for his expose of Willowbrook. His coverage eventually led to Court Orders in 1975 that began to move residents back into the community.

While Willowbrook would come to be closed in the following years, the institutionalization of developmentally disabled adults across the country would continue. That includes here in California, a state that has been on the forefront of shutting down its warehouse institutions. Little by little its chipped away at the system, granting residents agency, and rehoming them back into their communities. Still, pockets remain - it turns out it's a difficult, slow process to fix generations of our past mistakes.

One of the reasons that change has been so slow and difficult was that institutionalization was the accepted norm forced upon families for decades. Senior references this in a recent interview with journalists Mika Brzezinski and Katty Kay on MSNBC:

"Back in 1953 when my aunt was institutionalized, [institutionalization] was customary for the day. That's what all families did, pretty much...and the belief was that you sent people like her away."

In the interview, Senior goes on to compare the experience of her aunt Adele with a young girl she met in Kansas City who shares many of her aunts traits. There, Senior notes the different life that the girl will get to experience because she received the understanding and supports needed to remain with her family at home.

"She's this bright, bubbly ingénue, who has this highly dedicated mother," says Senior. "She's going to be this thriving human being. She knows what she wants, she's full of pluck. She'll have a job, I bet. My aunt was narcotized within an inch of her life, given all these anti-psychotic medications. They did her no good - they just sedated her...Could you imagine, in that window, if she had just been loved, or shown one molecule of interest in her intellectual and emotional growth?"

Thanks to Senior and her mother, they were able to find Senior's aunt Adele. They've since integrated Adele as best they could into their community. More importantly, Adele has been made to feel loved and to know that she - as each of us deserve - has a home.

It's not just those who are institutionalized who need to be loved and provided a home, it's every neurodivergent child. Too often, those with neurological differences are made to feel unknown and 'less than' others around them. Unfortunately, this same pattern which haunts neurodivergent children in childhood follows them throughout their adult lives.

It's time for all of us to break down the institutions that separate us - whether they are actual institutions or our attitudes and actions towards those with neurodifferences. We all deserve a home, a place where others "get us". We all have the ability to make others feel loved and at home too. Let's do that.

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John Marble is the founder of?Pivot Neurodiversity?and is a training partner and classroom instructor with?Neurodiversity Pathways.?

He is autistic.