My sister Beth, who is 11 months younger than I, has developmental disabilities. When she was born in 1960, it wasn’t uncommon for doctors to recommend that parents place children like my sister in institutions, but my parents were strongly opposed to doing that. So my sister grew up at home, and I knew little about institutions.

In my late 30s, I wrote a memoir about my relationship with Beth, Riding the Bus With My Sister, and when it came out, I started getting invited to speak at disability-related conferences around the country. At every event, I met people who’d lived in, worked at, or had relatives who’d been sent to institutions, and all of them were eager, sometimes tearfully so, to share their stories with me.

Over and over, I returned home reeling. The reality of institutions had obviously affected millions of people—yet no one outside of these conferences spoke about such things, or even seemed to know about them. And even I, a sibling who did know, had known very little.

I began thinking I should write a novel that dealt with the material, but the subject seemed so massive that I just put the idea to the side.

Then one day, after a talk in Illinois, I came across a book at a vendor’s table, God Knows His Name: The True Story of John Doe No. 24, by Dave Bakke. Immediately intrigued, I bought the book. In 1945, I learned, a deaf, African American teenager was found wandering the streets in Illinois. No one understood his sign language so no one knew who he was. A judge declared him “feebleminded” and put him in an institution. There he remained for 50 years until he died.

The tragedy of John Doe No. 24 haunted me—and all the more so because I’d come to understand that countless other people had endured similar fates.            

Yet I still couldn’t fathom how to present such an emotionally fraught topic.

A few years later, the college where I’d taught part-time for over a decade restructured my department and I was let go. Grieving the loss of a job I’d loved, I was sure of only one thing: I wanted to keep writing.

So in this vulnerable state, I sat down with a notebook, waiting to see what would emerge. And instantly, it came.

It is 1968. Night. A rainstorm. An elderly widow is in her farmhouse, reading a book. Who is she, I asked myself, and then I knew: she was a retired schoolteacher, in a state of grief. A knock comes to her door. Who is it, I asked myself. Again, I knew. Standing before her is someone with my sister’s disability—and someone like John Doe No. 24. They are the love of each other’s lives, and he calls her Beautiful Girl. They have just escaped from an institution—and Beautiful Girl has just borne a baby girl. Then the whole first chapter spilled out, and when I reached its ending, I was as shocked as my readers have been when she says to the widow: “Hide her.”

Then I just followed the story, and it flowed from me in a way that nothing had before.

I’m not sure I believe, as some readers have suggested, that John Doe No. 24 reached out from the beyond and told me about the life he’d wished he’d lived. I do know that I could not have written this book without being Beth’s sister—and without believing, deep down, what my parents taught me from the day Beth was born: that everyone deserves to love and be loved, and to live a life of dignity and freedom.

 

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