reconsidering ashley

A few weeks ago, I blogged about the medical abuse by her parents of a girl known as "Ashley X". Kids On Wheels, the magazine I help write and edit, ran a letter in response to their article on those parents' choice. I'm posting the outstanding letter with permission of the author.

I love your magazine, but I was frankly appalled when I read "Considering Ashley" (Wheel Life, Winter 2007). For all of us to have to worry that ethics committees and families might consider mutilating a little girl, and subjecting her to experimental hormone injections as a preferable alternative to institutionalizing or even euthanizing her, is so far off the charts that I am left speechless. Ashley is not the problem. The problem is that all the Ashleys and their beleaguered families don't have the supports they need.

We would never be having this discussion if Ashley had been a boy, and the parents had cut off his penis and testicles. Nor would we be having this discussion if Ashley did not have a disability. Ashley's parents said they wanted to spare her from the discomfort of large breasts and the potential for breast cancer, so they cut out her breast buds. Yet, both her mother and her sister still have their breasts. How did the parent's access the crystal ball that assured them that if she was allowed to become a woman she would absolutely have painful large breasts and a high risk for breast cancer?

Removing Ashley's uterus was rationalized by saying the goal was prevention of menstruation and menstrual cramps and potential pregnancy. If, as they stated, no one is allowed to care for Ashley but her parents and grandmothers, how would she ever be subject to becoming pregnant, assuming she was even physically able to become pregnant in the first place? Why is the concern for pregnancy, not for the potential of being sexually abused? How is that being prevented? Because if sexual abuse is being prevented, then so is any potential for pregnancy. And there are definitely medically approved ways to prevent menstruation without removing body parts.

And now that Ashley's parents have been able to create this designer "pillow angel," who will hold them accountable to their stated rationale of caring for Ashley for the rest of her life? The answer is no one, because whether or not her parents had sought the "Ashley treatment," there is never a guarantee about what the future holds. Life happens. Her parents could die or become disabled, or just get tired, or something else unexpected could happen, and they might have to consider alternative living arrangements for Ashley. And make no mistake, those alternative arrangements would in no way be limited to an institution! Stating that an institution or euthanasia are the alternatives to surgery and hormones is patently false, and a great disservice to all the families and service providers that care for children and adults with the most significant disabilities in their own homes and communities every day. Even at this tender age, Ashley could be cared for by another family in that family's home, if her parents were unable or unavailable to care for her.

I am further dismayed that Ashley's parents have had no trouble "showing and telling" every intimate detail about her on their website, but they have chosen to protect the privacy and confidentiality of themselves and their other children by blacking out their faces in the pictures. Why are they allowed that dignity and respect for privacy, yet Ashley is not? Why is it OK to display Ashley and tell the world what they did to her? Is it OK because, after all, Ashley has a disability, and she'll never know? Does anyone else not see the double standard here? Does anyone else not see what's wrong with this picture?

Thanks for KIDS ON WHEELS. Our youth definitely need to develop a sense of community at the earliest possible age. Their very survival depends on it!

Marsha Katz
ADAPT Montana

Thank you, Marsha Katz. I'm ashamed that I didn't even think of the sexism and misogyny inherent in Ashley's abuse.

I appreciate Katz's clear indictment, and I appreciate her anger.