ADAPT Youth Appalled at Parents Surgically Keeping Disabled Daughter Childlike

By Marsha Katz

Youth members of the national disability rights organization, ADAPT, today expressed shock and outrage on behalf of the entire national membership of ADAPT at the news of nine-year-old Ashley from Seattle, whose parents had her uterus, appendix and breast buds removed, in addition to having her undergo hormone injections in order to minimize her height and weight as she grows older. In their blog, Ashley's parents have rationalized these drastic measures to manipulate Ashley's size and physical maturity by saying it will be easier for them to care for her and involve her in family activities.

"As a young woman with a disability, I am extremely disturbed on multiple levels by Ashley's situation," said Amber Smock of Chicago, Illinois. " I am angry that Ashley's parents, the medical establishment and society at large think it is acceptable to surgically and hormonally manipulate Ashley because the reality of her adulthood as a person with a disability is too 'grotesque' for them. With these drastic measures, her parents and doctors are physically reinforcing the disrespectful attitude held by many that people with disabilities are all "childlike," and can be treated like property or science experiments."

Ashley has now become a modern day symbol of the long and dishonorable tradition of sterilizing people with disabilities. In 1927 the U.S. Supreme Court decision in Buck vs. Bell upheld that tradition as a way to "eliminate defectives from the gene pool."

Today, parents and others rationalize sterilization by saying it will prevent any possibility of pregnancy from abuse. Ashley has not been reported to be at risk of either abuse or pregnancy, and her parents say that her only caretakers are themselves and her grandmother. Ashley's parents also say in their blog that removal of her uterus will prevent her from having periods. For over two decades there have been far less invasive means of suppressing menstruation in women when medically indicated. It is not known why Ashley's parents resorted to the much more invasive procedure of a hysterectomy.

"Perhaps even more distressing to those of us with disabilities," said Smock," is that a medical ethics committee supports treating Ashley not as a human being, but as a 'problem' to be managed in a way they wouldn't consider or allow for other children. We have enough difficulty with the medical establishment's power over our lives, and its lack of recognition of disability as a social status and not a medical problem that must either be "cured" or "killed." This case opens the door for other people with disabilities to be subject to mutilation and chemical castration, simply because we have a disability."

"The severity of Ashley's disability does not mean that it's okay to treat her as less than a full human being," continued Smock. "The impact of Ashley's situation is not limited to just her and her family. Ashley's mutilation has started us down a slippery slope where her case could very well be used as a precedent to damage one person with a disability after another. Instead of mutilating children, we need to put our energy into assuring that people with disabilities and their families have the support they need to age naturally and live lives of quality in their own homes and communities."

On behalf of ADAPT, Youth ADAPT members encourage the Seattle Childrens Hospital ethics committee that approved the invasive procedures to issue a statement acknowledging the socially and other harmful aspects of what Ashley's parents are now touting as the "Ashley treatment."