When I started writing about people with disabilities 30 years ago, my mentor quickly became evident. Robert Perske’s clear and plainly elegant words shaped my own thoughts about this new element of exploration I was in. He’s become a dear family friend over the years. And, of course, his pal Martha’s drawings captured the very essence of beautiful humanity in the faces and bodies of her subjects. So much has changed about the way people with disabilities are supported and encouraged to be part of the world, and so many people enjoy interesting, lives of worth and value. Despite how far we’ve come, Bob still makes me sit up and and remember that it’s more important than ever to guard against what smacks of ‘us’ and ‘them’. That attitude, even if unbeknownst to the people who carry it now, comes from very scary beginnings. Bob still sends me things that remind me to never take what we have for granted, like this one:
“After reading Good Blood, Bad Blood, I can’t get Emma Wolverton off my mind.
Dave Smith and Mike Wehmeyer are by far the sharpest researchers yet to carefully and completely pinpoint how Henry Goddard used Deborah Kallikak as his “poster child” for identifying persons with disabilities and trying to wipe them off the face of the earth.
I became acquainted with Goddard’s efforts 54 years ago after being hired as a chaplain in a new state institution. Some staff members wondered how a clergyman might function in a place like this. I wondered too, but others showed such kindness for the residents, I copied them. I still copy people like that today.
Even so, an aged psychologist delivered an orientation course for new employees that included the reading of Goddard’s small, 121-page book, The Kallikak Family. I still own that book and memories of the sleepless nights it caused me. Now, these memories help me see how far we have come since then.
But the last paragraph in the book made me want to shed tears:
When we strip people of their names, we strip them of their dignity, their value, their selfhood. It allows us to talk about “them” in anonymity, referring to our pejorative name for them or the number we’ve tattooed on them, as if they were not people, not human. We can refer to them as morons, criminal imbeciles, or degenerates as if they were not really sentient beings. We can lock them away for the rest of their lives or sterilize them without their knowledge. We — we humans — can march them into gas chambers by telling them that they are going to take a shower.
Her name was Emma, not Deborah.
We at least owe her the respect of calling her by her name.
Is there something we can do to keep Emma’s name alive?”