The Disability Gulag
By HARRIET McBRYDE JOHNSON
''My father died when I was 2, and I lost my mother when I was 5.'' Throughout my childhood, that's what Grandmother says. She's a fine storyteller with rare gifts for gross delicacy and folksy pomposity, but she doesn't give the details, and we don't ask. To me, it's enough knowing that she's an orphan, like Heidi -- like Tarzan even! What else is worth knowing?
Eventually our cousins tell us. When Grandmother was 5, her mother didn't die. She was placed in an asylum. There she lived until Grandmother was in her 20's. There she died.
The news seems to answer some questions about Grandmother. Why does an independent thinker set such store on conventional behavior? Why did she marry a ridiculously steady Presbyterian?
I think it's fear. Fear that one day something will go wrong and she, too, will be taken from her family, snatched from the place she has made in the world, robbed of her carefully constructed self and locked up for life.
I know that fear. I share it.
Grandmother lost her mother in the early 1900's to what was considered progressive policy. To protect society from the insane, feebleminded and physically defective, states invested enormous public capital in institutions, often scattered in remote areas. Into this state-created disability gulag people disappeared, one by one.
Today, more than 1.7 million mothers and fathers, daughters and sons, are lost in America's disability gulag. Today's gulag characterizes isolation and control as care and protection, and the disappearances are often called voluntary placements. However, you don't vanish because that's what you want or need. You vanish because that's what the state offers. You make your choice from an array of one.
But now the gulag faces a challenge from people who know the fear firsthand. . . .
Hariett McBryde Johnson last wrote for the magazine about her exchanges with Peter Singer.
[The full text is available at <http://www.nytimes.com/2003/11/23/magazine/23DISABILITY.html>.] ****