Nothing about Ashley is, or ever will be, fully realized. Not her size, which has been medically “attenuated” to keep her small and easy to care for. Not her body, which has been stripped of its undeveloped breasts so that they won’t grow large enough to cause discomfort, harvest cancer or invite sexual assault.
Not her uterus and ovaries, which were removed to prevent menstruation, potential cancer sites, as well as pregnancy. Not her voice, which has already been shrunk to fit her body and IQ.
Ashley is 9-years-old, but she is not and never will be her own person.
She’s a “pillow angel” whose anonymous parents were tragically misinformed and misguided into believing that keeping her pocket-sized and minimized was in her best interest.
Her case made headlines last month. Born with a developmental disability called static encephalopathy, she showed signs of puberty at 6-years-old. It drove her parents to seek drastic interventions. Medical professionals embraced the call for help with compassionate and willing arms. In 2004, Ashley was operated upon.
After an investigation by Disability Rights Washington (the recently-renamed Washington Protection and Advocacy System), Children’s Hospital admitted it was wrong to perform a hysterectomy without a court order. Not wrong to perform the surgery on a 6-year-old, just wrong to do it without going through the appropriate legal channels. Other than that, no problem.
In a case of grabbing hold of the right stick at the wrong end, the eye of the media storm has fixed itself on the parents’ choice to stunt the body and potential of their daughter.
The great brains of modern medicine and ethics should not, however, be focused solely on the decisions made by Ashley’s parents. They should be thinking long and hard about the dangers of a society that makes such decisions possible.
“She gone,” says Jim McNamara, president of Self Advocates of Washington, an organization run by and for individuals with developmental disabilities. “She’s not Ashley,” he says. “She’s ashes.”
McNamara expresses the grief of individuals whose bodies and IQs have been measured, assessed and routinely invalidated. Ironically, but not surprisingly, they have yet to be respectfully consulted on the ethics of medical modifications.
Consider Ken C. Now 71-years-old, he talks about having had a lifetime of decisions made in his best interest. “They said I didn’t know how to read or write and I didn’t know anything about money, so they put me in Rainier School for the rest of my life,” he says. “I tried to commit suicide because I thought I’d never get to see the outside.”
While he did move out of the institution eventually, he faced another kind of institutionalization: sterilization. His mother said it was the only way he could get married. “They said they didn’t want any kids to look like me,” says Ken.
He thinks surgery is more risky than pregnancy. It’s one reason he, and not his wife, chose sterilization. “They didn’t think she could make it,” he says. What a choice, especially for someone considered incapable of making major decisions.
Asked what he thought about Ashley’s hysterectomy, he says, “Her parents need to hire good helpers that treat her right.”
In Ken’s view, the answer is to strive for the best, not prepare for the worst. Rather than accept abuse and a life of discomfort as Ashley’s fate, he poses a much more revolutionary idea: fix the problem, not the person.
Emily Rogers, self-advocacy coordinator for The Arc (Advocates for the Rights of Citizens with Developmental Disabilities) of Washington State, agrees. “I really believe that there’s no amount of modification to a person that can happen so that they are not at risk,” she says.
Like Ken, Rogers promotes the idea that other options are available and that new ones can be developed to prevent future Ashley-style treatments from occurring. “She was six years old at the time this happened, but that doesn’t mean that over the span of her lifetime that’s the extent of who she’ll be.”
As far as Ashley’s treatment is concerned, Ken suggests a fitting end to the debate that many professionals, parents and pundits have yet to embrace: “Treat her like a human being.”
By Grier Jewell, Contributing Writer
Grier Jewell serves as host of Olympia Insider, a video podcast devoted toward disseminating news and information on developmental disabilities.