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The young parents of a severely developmentally disabled daughter have decided to freeze her growth at age nine. In conjunction with doctors at Children’s Hospital and Regional Medical Center in Seattle and with the approval of that hospital’s ethics board, young Ashley’s parents determined that her uterus should be removed, her breast buds excised, and large doses of hormones be administered. As a result, Ashley will remain a perpetual child. She will never experience puberty, never grow beyond her dimunitive height of four and a half feet, and never grow up, no sir. Unlike Rip Van Winkle, who was lost in time, she is Peter Pan, forever frozen in it.
No one can deny that Ashley faces a difficult life - she is bedridden, a result of static encephalopathy of unknown etiology. I work with a child in the same state as Ashley, bed and wheelchair bound, who is eleven. His parents are struggling with his needs and the simple fact that his increasing size makes adequate care difficult. What seems tragic and depressing to an outsider like me must be infinitely more tiring, frustrating, and emotionally draining for the family. I can sympathize with the feelings that led Ashley’s parents to make their decision.
I believe that Ashley’s parents made this decision out of profound love for their child. I also believe that it was incredibly wrong.
I am employed by California’s Regional Center system, a series of 21 non-profits, distributed by population, that provides services to the developmentally disabled. We were created by a landmark piece of civil rights legislation, The Lanterman Act (so named for its principal proponent, Republican State Assemblyman Frank Lanterman). It affirms that the disabled have fundamental civil rights that may not be taken from them, and put into place state funds, administered through the regional centers, to assist children and adults with developmental disabilities. Crucial to our work is a commitment to our consumers’ rights.
As much as Ashley’s parents love her, their needs could not be properly divorced from such a decision if left in their hands. No one seems to have spoken up simply for Ashley during this whole process. Her rights were unconscionably violated, no matter the good intentions behind that decision.
Ashley’s parents defend their decision since it will allow them to provide a better quality of life for Ashley for longer than they would have had she developed naturally. She will, they and her doctors contend, avoid many of the discomforts and health risks associated with disabled children and adults as their bodies change. This is undoubtedly true. Caring for a disabled child, especially one like Ashley, is an incredible emotional and financial commitment, and society as a whole has not embraced the idea of communities drawing together to aid parents caring for children and adults who require a level of attention most people can barely fathom. In 1969, the government of California made the decision to devote considerable resources to their care.
And it is expensive, have no illusions on that score. My regional center alone is currently funded to the tune of $160 million dollars per year. We serve 12,000 individuals and between federally-mandated Early Start services (for which the federal government reimburses the states) and our own mandate, we take in 40 new consumers per week, half of whom will be eligible for our ongoing services until they pass away or decide they no longer want us.
Between the regional center and Medi-Cal funded services, the state of California spends a lot of money trying to help people with Ashley, but it’s never enough. There aren’t enough people willing to go into nursing or any of the other fields our services require. But every bit does help, sometimes considerably, and we can do more in any state. All it takes is a bit of will.
I am normally loathe to engage in “slippery slope” arguments in matters of ethics. They tend to become sloppy and awkward, if not outright histrionic. However, in matters of unequal power, I am willing to suspend my reticence. Make no mistake: There was an imbalance of power in this decision. Ashley had no power or ability to contradict the conclusions of her parents and physicians. My concern is not that people will start taking their children with autism and stunting their development in order to keep their behaviors in check. My concern is that someone without a voice was allowed to undergo an irrevocable procedure to solve a problem with no perfect answer, but many other solutions.
