Saturday, October 14, 2017

The young disabilities scholar

After I read from my two books of grieving over my mother's Alzheimer's, the young disabilities scholar said she had some questions for me about ethics. She asked if I had permission from my mother to write about her. (No, my mother could not give her permission.) Had I published any of the work while my mother was still alive? (Yes, one volume.) Why did I use the names of people in the Alzheimer's home? (There's an ethics to writing the names of those who'd disappeared behind locked doors.) Did I ask the family's permission? (Aside from a cousin in Ohio, whom I never see, there is no family.)

Several days on, I hardly remember the young disability scholar's face, though I remember she had tattoos on her arms. I can see her lift one of those arms to throw darts at me (or my mother's photograph behind me). I feel I am too sensitive to her questions. They are good questions, real questions, questions one asks writers. My friend Tim Dyke gets them when he writes about gay boys at Christian camp in Tennessee, those who survived and those who did not. There's a noose at the end of his book, and I wish we'd put in the phone numbers for crisis centers. Suicide hotlines. It would have been the ethical thing to do.

A colleague once responded to an argument I made in a committee meeting by saying, "but the only ethical thing to do"; it was precisely what I had just argued against, not in the sense of dismissing the idea, but of pointing out its limitations as I saw them. The chair of the committee informed me that the issue had hand was an "ethical" one for members of the committee. I said my position was ethical, too, but that didn't resonate for him. (I grieve for him now, too.)

"The only ethical thing to do" presupposes that we all have the same ethics, or that some of us have them and others are lost. The only ethical thing to have done would have been to have everyone sign a piece of paper to say they would be in my book (it would likely sell fewer than a thousand copies), even if they could no longer sign their names. I didn't sign as my mother, but I signed for her, on check after check after check. I was my mother's keeper.

Is there a singular ethics of grieving? Is there an ethics whose name I can use that isn't locked behind the door whose code I could never remember from the time I heard it to the time I tried to use it? Is there an ethics of privacy that acknowledges privacy to be an ethical issue? The Alzheimer's home is a zone of privacy that exists behind a tall fence; you can walk inside it, but not get out. To wander is to break such privacy. To wander is to endanger yourself and others.

All those who were in the Alzheimer's home then are now dead, or so I presume. Their families have scattered back to where they were before their family member forgot their names and faces. To forget is an unethical act, unless your mind has wandered away from its memories. No memory box can contain them. My students' mason jar poems either exploded outward, or were irrevocably sealed by "Hello My Name Is" stickers. We who love to be contained.

1 comment:

Unknown said...

Brava Susan! You brave, ethical human being. I've had similar moments about Communion of Saints, in which I actually changed most names, but most of the folks who knew us would have known who I was writing about, having witnessed as I did, the unethical treatment of people with HIV/AIDS. I was once rescued by a good friend from someone who asked who would get the money I made from the book, since I'm not queer sexually (and, even that's up for argument). I didn't know what to say, but my friend responded: "Oh, you mean the buck three sixty poets get for writing? Probably be used for postage to send someone a free book." Carry on sister.