Tikkun Magazine



Love: A Letter To Ashley’s Father

Let me lay it down. I am furious with you—you who are known in the media only as the father of a disabled girl you call Ashley. You say she has the consciousness of a three-month-old. You chose a surgeon to lift her six-year-old uterus out of her body, another doctor to slice her breast buds away, and an endocrinologist to flood her with estrogen. Together they froze your daughter’s body in time, making her a perpetual child. The ethics committee at Seattle Children’s Hospital supported your decisions. You call Ashley your “pillow angel.”

“Does love mean protecting your privacy while displaying your daughter’s body and story?” the author writes. “I know you intend ‘pillow angel’ as an expression of love, but I feel those words in my bones as separation, exclusion, a denial of humanity.” Pillow Angel by Laura Beckman. Credit: Laura Beckman (laurabeckman.com).

In spite of my fury, the questions I have for you are all about love. You say that you love your daughter very much and that love motivated all your medical choices. Let me try just for a moment to trust your love, to accept the terms upon which you made your decisions. You wanted to protect Ashley from the discomfort of menstruation and large breasts, the damage of sexual assault, and the risk of pregnancy. You wanted your daughter to stay small so that you could more easily take care of her, keep her safe and happy. You and Ashley lack a shared language, and she quite possibly lacks the ability to process and use words. She couldn’t tell you what she wanted with her body, couldn’t have a voice in these huge medical decisions, and so you decided out of love. But love is not unassailable. Let me ask: how is a father to love, nurture, and protect his disabled daughter who has no language and no way to walk or roll through the world on her own?

I know women who can only move one finger, women who operate their wheelchairs by sipping and puffing, women who never leave their beds, women who speak with computers or alphabet boards or not at all, women who lost all their words at age seventy, women who never had words, women who as girls were thought to be without communication. Busty women, bleeding women, women—all disabled—who stay safe, comfortable, and happy. Does love mean reshaping your disabled daughter’s body so she will never stretch into womanhood?
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Eli Clare lives and writes in the Green Mountains of Vermont. He also speaks, trains, and facilitates all over the United States and Canada. He is the author of Exile and Pride and a forthcoming book about the politics of cure.
 

Source Citation

Clare, Eli. 2014. Love: A Letter To Ashley's Father. Tikkun 29(4): 35.

tags: Health, Science   
http://www.tikkun.org/nextgen/love-a-letter-to-ashleys-father