Raising children with disabilities is never easy, but for most families, giving more of themselves than they ever expected to is a small price to pay for knowing that their child will live as fulfilling a life as is possible. For one family, however, caring for their child has gone far outside the realm of what most of us would think of doing.
Ashley, age 9, whose surname has not been disclosed to the media, has a condition called static encephalopathy - a type of severe brain damage that leaves the brain permanently at a younger level of functioning. Regardless of her age, Ashley will always have the mental capacity of an infant. She is conscious and alert, but cannot walk, talk or manipulate objects.
This state prompted her parents to ask for drastic medical measures, which they refer to as the "Ashley treatment." In 2004, Ashley was given a hysterectomy and had her breast tissue removed. She also received estrogen hormone treatment to slow her growth, which continued until recently, after her parents deemed the treatment a success. Ashley is now 4-foot-5-inches and weighs 75 pounds as a result of the procedure, stunting her height by about a foot and her weight by around 50 pounds.
Ashley's parents had to argue the case for the "Ashley treatment" to a panel of medical ethicists, who agreed that the procedures were in the young girl's best interests, that the parents concerns that an older, taller, heavier daughter would be more difficult for them to properly care for were reasonable and that it was better to spare Ashley the physical discomfort of puberty as she is mentally incapable of understanding what she is going through.
Her family also has a history of breast cancer, and it was felt that removing Ashley's breasts before they developed would spare her from developing or having to go through treatment for that disease.
With so many concerns, it is easy to think that Ashley's parents are acting out of love and doing the right thing for their child. Caring for children with such severe disabilities is an immense responsibility and can place a great deal of strain on the family as everyone rearranges their lives to accommodate a family member that is unable to care for themselves.
However, Ashley's parents have gone far outside of the realm of moral behavior into a realm of thinking that disregards Ashley's essential humanity. This girl is a conscious being and is mentally aware, even if her body and brain lack the ability to express that awareness. Inside of her mind, she knows, on a very basic level, that she is a person, and that there are other people in the world who can interact with her - her parents say that she is "alert and aware of her environment" on the blog they established to discuss Ashley's treatment.
As a conscious mind, whatever the state of her body might be, we owe Ashley the same moral dignity that we would give any other human being. We expect parents to adapt and meet the needs of their children, to be self-sacrificing and clever in order to help their child get the most out of life. Ashley, however, has been adapted to suit her parents, her body made to fit what her parents are capable of doing for her, instead of them finding new ways to expand their capacity for care-giving.
It would be inconceivable to take away someone's arms and legs, even if they had been paralyzed from birth and unable to use them. We would never deny a person with autism the right to interact with other people, even though we know that they will never develop the same social skills as someone who is not autistic. We could not bring ourselves to take away the eyes of those who are blind, the vocal cords of those who are mute or the ears of those who are deaf, even though all these organs could do is provide a source of tissue that could become diseased. We most certainly would never dream of lobotomizing anyone with severe brain damage, even if those parts had become useless, even if doing so would not take away anything the person would have been incapable of, anyway.
We act in such a way because we are more than just complex organic machines, devices whose parts can be removed or altered if we want to. Even when our brain lacks the capacity for logic, or the ability to judge, at our very core we know that we exist. Even if we are unable to communicate our feelings, we still have them, and others must consider how we might feel before acting on our behalf, because that is the morally correct thing to do.
I do not know how Ashley feels, and I understand that neither I, nor anyone else, will ever really know. Perhaps her parents are correct, and that she would have been scared and unable to cope with her body as it grew, changed and responded to pain, disease or discomfort. Perhaps they are correct in believing that what they did was in her best interest.
However, I cannot help but wonder if Ashley would have been soothed by the embrace of her mother while having her period for the first time, or if she would have been fascinated by seeing herself change. I wonder if she is aware enough to have felt joy if her father told her she was beautiful while he used all his strength to help support her while giving her a bath. None of us will ever know, of course, and for that reason more than anything else, the "Ashley treatment" should be seen for what it is: a failure of conscience.
Matthew Adair is a senior art education major and can be reached at matt.adair@gmail.com.
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