What I'm Reading: The Child Who Never Grew

Pearl Buck's The Child Who Never Grew is about her daughter, Carol, who suffered from mental retardation--developmental disability, I suppose we'd say today-- and Buck's search for an institution to house her once she reached the age of nine.  It is also concerned with her inability at first to reconcile herself to her daughter's condition, and her gradual realization that her daughter's handicap is balanced by gifts of empathy and simply joy.

I was anticipating the slim book to be a memoir, with lots of episodes from their lives and a narrative arc.  But it turned out to be more of an extended essay, and includes digressions about what parents in similar situations should look for in their own searches for institutions.  Some of the advice is timeless, but much of it feels out-of-date, relevant at the time of the book's publication in 1950 but no longer.  Still, her descriptions of certain contemporary (to her, I mean) state-run institutes for the mentally retarded are chilling: places where toilet facilities are unavailable and floors are simply hosed down a couple times a day; hundreds of children sitting endlessly on benches in dark rooms, waiting for something that never comes.  I believe decades of reform have closed such large, indifferent institutions in the United States--right?

I should point out that Buck did not actually wish to place Carol outside her home, but after a harrowing incident in revolutionary 1940s China (where Buck lived most of her early life) in which her life was endangered, she realizes her daughter will almost certainly outlive her, and it would be better to find a home for her where she can be settled, than have her taken as a ward of the state after Buck's death and put God knows where.  So Buck moved to the U.S. and started a search for a sunny, warm place where Carol could be happy.  And the good news is, she did find such a place: the Vineland Training School in New Jersey.  (Which still exists today, according to Wikipedia, and seems to be a fairly prestigious research institute for research on the developmentally disabled.)

In the afterward, written by Pearl Buck's daughter and Carol's sister, Janice Walsh, we learn that Carol did outlive her mother, and seemed to be happy to the end of her days.  Not long before Pearl Buck's death in 1973, scientists discovered the cause of her disability--phenylketonuria (PKU), caused by an inability to process certain proteins.  The disease is treatable today by following a certain strict diet in infancy and early childhood.  It is impossible not to feel anguish for the misery caused from the lack of that knowledge in the lives of Pearl Buck and her family.  Yet, perversely, her daughter's condition may have been a blessing for society at large: the book suggests a great part of Buck's impetus for her remarkable literary output was the need to pay for her daughter's care.