Its often nervewracking for me to talk about or write about hot button topics. Because my opinion didn't matter and wasn't solicited when I was growing up, I learned not to have one. What's the use of having a position on something if you aren't allowed to express it, right?
But as an adult, I am learning to develop that critical thinking, and finding the voice to express it. Its scary. I don't want people to think I'm dumb. And I don't like to argue. I want to be articulate and persuasive in both oral and written communication. But many times on important topics, I read what others have written or stated, and usually come to the conclusion that they were able to state their viewpoint much better than I could have. I usually agree with their position, but feel that they said it better.
So it is with this trepidation that I plunge headfirst into the debate of Ashley X, definitely a hot button topic with multiple viewpoints, lots of emotion, and no easy answers.
I have not read everything there is to read in cyberspace about the case of AshleyX, and I am not a medical professional. I am also not a caregiver for a person with a severe disability. However, I have read quite a bit. And I don't think I have to be a doctor or a caregiver in order to have an opinion on this.
One think I have done is read the parents' blog. Here is the URL if anyone wants to go there: http://ashleytreatment.spaces.live.com/blog/ I have read it twice. My position is that, while I do have compassion for what the family is going through, and I do believe they made these decisions out of love for their child, I am very much against what was done to the child. I see their logic, but I do not agree with it. And I feel much anger for the doctors, who are supposed to be highly trained professionals with a code of ethics. I cannot understand how an entire team of supposed experts thought it was ok to do these things to this child.
For me, most of what was done to this child just does not make sense. The parents talk repeatedly in their blog about prevention. Much of what was done to Ashley was accomplished to prevent possible problems later in her life. But the key here is POSSIBLE. There was no guarantee that Ashley would develop breast or uterine cancer. There was no way to know for sure that she would develop large breasts that would cause her discomfort. They also make the argument that, "Well, she didn't need those things anyway. She was never going to breast feed or bear children." I'm never going to bear children or breast feed either. Does that mean its okay to remove these organs from my body? If you want to take that extreme, why didn't they remove her teeth as well? She doesn't use them to eat. She can't hold anything, why does she still have her arms? They also claimed that having breats and a uterus would make her more of a target for sexual abuse. Again, I don't agree. Ashley could be violated with or without breasts and a uterus. True, she can't get pregnant now. But a less invasive procedure could have been done to protect her from pregnancy. She also could have been given medication to stop her menstrual cycle. A hysterectomy at six years old was not necessary. For me, the reasons stated are not good enough to justify what was done to that child.
For me, the story of Ashley is a very sad testament to how bad life can be for people with disabilities and their caregivers in the year 2007. If Ashley's family had adequate financial assistance, quality respite and attendant care, and ongoing community support, I do not believe such drastic measures would have been necessary. While it is very admirable that the parents want to continue caring for her at home with no outside assistance, they need to undstand that the day will come when they are no longer able to do so. There is a good chance that Ashley will live for many years. Keeing her small will help them in the short run, but it is inevitable that one day they will become too old and too feeble to care for her on their own. So then what will they do? Obligate their other children to take on the responsibility? What if their children refuse, or become disabled themselves, or do not outlive their sister? Keeping her small is a short term solution to their long term situation. And while I understand that I am not a medical professional, I do not agree that stunting her growth will make her less likely to develop pressure sores, pnuemonia, and other complications. I have a friend with a disability who is a bit taller than Ashley and around the same weight. She has experienced pressure sores, pneumonia, and has had a blood clot in her lung. Perhaps the incidences are lower. But how much lower? Enough to warrant the procedures done to Ashley?
Out of everything that I read on the parent's blog, this paragraph frightened and sickened me the most (bolding is mine):
"If people have concerns about Ashley’s dignity, she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development as George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, alludes to in a related article4: 'If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.'"
Oh my G-d. Please do not tell me in the year 2007 that a person, A HUMAN BEING, does not have a right to her body, her internal organs, her skin and tissue, because of a diminished mental capacity. Ashley may have a brain that does not function correctly, but her body was normal and healthy. Why is it okay to alter that? And why are we allowing the parents to encourage other families to do the same?
As an isolated case, the story of AshleyX is disturbing enough. But the fact that such medical practices, and the thought processes behind them, could become an acceptable facet of our society, truly frightens me. Anyone who does not see the potential of a slippery slope in this case is in denial, in my opinion. In denial because they are most likely currently healthy in mind and body. Individuals with well-being have the voice and the ability to steer their course, to manage their destiny. And people with less health, more and more must live in constant fear, of losing their autonomy, losing their voice, losing their basic human rights. You think I am going too far with this? I don't. Not when people with disabilities are being abused every day. Physically abused, emotionally abused, starved, tortured, neglected, AND forced to undergo unnecessary medical procedures. Every single damn day. I appreciate that the family made these decisions out of love. But medically unnecessary procedures undertaken out of love are still medically unnecessary procedures. Bottom line.
librarianintx
