'Rachel in the World'

"If I can’t get a placement for my daughter by June 2005, I’ll leave her on your doorstep.” Jane Bernstein’s words, referring to her then-20-year-old mentally retarded daughter, Rachel, were dramatic, certainly. Did she really mean them, though? Could any mother?

At least one mother did. Around the same time Bernstein delivered her threat on the phone with an administrator at the Office of Developmental Disabilities and Mental Retardation in her county and then put it onto paper in a follow-up letter, another woman abandoned her 22-year-old daughter at a police station.

“I knew I never would,” Bernstein writes in her new book, Rachel in the World. “At the same time, I fully understand it”—“it” being the exhaustion and frustration that might drive even a loving, well-intentioned parent to such an extreme.
This ambivalence runs through Rachel in the World, a continuation of the story Bernstein, who teaches in the creative-writing program at Carnegie Mellon University, started in 1988 with Loving Rachel: A Family’s Journey from Grief. The first memoir chronicled the family’s efforts to come to terms with Rachel’s visual and intellectual impairment (caused by injury or trauma, perhaps viral, in the womb) and their effects on her family, which included Bernstein, her husband and Rachel’s older sister, Charlotte.

Rachel in the World picks up when Rachel is 5 but is mainly concerned with her passage into adulthood—a more complicated and difficult time, in many respects, than early childhood, when Rachel’s small size and cuteness helped to mitigate her weaknesses, and her general dependency was more or less age-appropriate. As Rachel grew older, Bernstein realizes, “I was confronted with something I had lacked the foresight to understand years before: cute is a dreadfully short-lived and risky condition.”

As Rachel grows older, meeting her demands becomes more exhausting for Bernstein, who captures the weariness of the day-in-day-out with surprisingly good humor. She paints early-morning scenes—“Ma! Can I have cereal? Ma, I’m up! Can I put on my robe? Can I have cereal? Ma, I’m hungry.”—that are frankly maddening just to read, let alone to contemplate living through every day.

The larger issue, however, is that as Rachel grows older, the services available to her and her family become fewer. Day-long programs are replaced by individual caretakers whom Bernstein often has to pay out-of-pocket; school must be replaced by work—and not all jobs for the mentally retarded are created equal. Then there’s the fact that Rachel wants desperately to live apart from her mother—and vice versa—but, they hear, the only spaces opening up are for people over 60. (Hence Bernstein’s dramatic threat to drop her daughter on someone else’s doorstep.)

Here, Bernstein deftly balances the personal and the political, using her and Rachel’s story to illustrate what’s at stake. Especially interesting is an interlude in Israel, where Rachel lives on a kibbutz for residents with developmental difficulties—no such program exists in this country.

Ultimately, in her quest to find the best life possible for Rachel, Bernstein leaves no doubt that, although she frequently
confesses herself “a bad mother,” she is exactly the opposite—even if she did once threaten to leave her daughter on someone else’s doorstep.

Rachel in the World by Jane Bernstein; University of Illinois Press, $26.95

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