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Sunday, Nov 8, 2009
I am a woman who has experienced extreme pain during my periods every month since I first started having periods. Even as an intelligent young woman with many doctors, literature, and female friends and relatives around to reassure me that this was normal and I wasn't dying, I still found menstration frightening and miserable. I can't imagine what it would have been like if a was a brain damaged invalid that couldn't even tell someone I was in extreme pain. A very large percentage of women are just like me. I am not a wimp when it comes to pain. Most of the doctors and dentists I have had in my life have commented about my high threshold of pain. If I were to live the life of this girl, I would want someone to perform those surgeries. I do not think our sexual organs define us as people. If I had to have a double mastectomy and a hysterectomy due to cancer, I would still be me in every way.
Playing G-d is not something I aspire too. Yet life has put me and my wife into that position at times. Having a son with Down Syndrome has given us challenges directly related to those Ashley’s parents have had to deal with. Thank goodness our son is not severely disabled and nor as totally dependent as Ashley is. Despite being blessed with a relatively high-functioning son, there are still areas where his disability prevents him from having the ability to make responsible decisions about certain aspects of his life. Our job as his parents are to maximize his ability to be responsible for himself, to empower him as much as possible. But when we hit a wall that cannot be breached, it is also our responsibility to make the decision for him, in his best interests, as best we can.
If we are not willing to make those decisions on his behalf, who would? I guess family or friends would be our first choice. We certainly would not want it to be a social worker or outside agency. In making far-reaching decisions on his behalf, we can at least be sure that our love and caring for him are an important part of the process.
Do we always do right by our son? I hope so, but I can’t be sure. And while some parents are unsuited for the task, I do know that in our case, as in Ashley’s case, I would very much prefer to trust that a parent is looking out for their childs’ best interest, no matter how radical or different that decision may seem to be. Caring for a child with a disability is a huge, long-term and sometimes daunting task. As shocking as Ashley’s case, and the decisions her parents have made on her behalf, may seem upon first hearing of it, reading the article, her parents’ blog and thinking about the circumstances they made decisions within made me appreciate the thoughtfulness, thoroughness and, most importantly, the love they brought to the process as they tried to decide what was best for their daughters life.
This story brought up for me, not for the first time, some hard, hard truths about what it means to be human.
2000 years ago, this child would likely have died in her first year of life. If she could not function normally in her family unit, she would likely have died.
This is true for nearly all badly disabled human beings. I'm not saying that's a good thing, it's just a true thing.
The brutal truth here is that human beings are simply not wired to deal with children who are badly damaged mentally and physically. We do it, heroically, but we aren't wired for it. It causes enormous pain and difficulty for any parent called upon to care for a child like this. I have friends who have a deeply damaged child, and caring for him has upended their lives in ways you can't even imagine if you're not going through it yourself. I know I can't. Luckily they make enough money that caring for him less impossible than it would be without, but their lives revolve around him and his problems. These friends have no real life beyond him, except for their work, which proves to be a refuge from the daily difficulties they face at home. And they do not see any special blessing in this disaster. That's because there isn't one.
I'm not sure what I'm trying to say here. I do know that judging these parents, or any parents in similar situations, is simply not possible for anyone not facing what they face.
I also know that up until our brilliant use of cheap energy made the survival of these children more possible than ever before, such children died young. And that is exactly how evolution works. The imperatives of DNA are exceedingly cruel, but, in every case, eminently sensible.
I've read all the letters, and frankly I'm a little surprised at the outrage. To me, the doctors mentioned in the article are hysterical and miss the point. "Autonomy"? "Personhood"? Have any of these people ever met a 3 month old? Based on the article, it seemed to me that Ashley's parents made an informed, reasoned decision to spare her the indignities of institutional care and the discomfort of changes that she wouldn't be able to understand.
What amazes me is that the same people who will protest the family's decision, and organize campaigns to shame them, are the same folks who are in favor of wars where thousands of innocents are killed for the oil industry, and say those who protest it are unpatriotic.
I think it's time for liberals to start to fight back against these morons. They have basically been running the country for the last fifty years by default, i.e. decent folks who don't want to live in hypocracy are fed up and don't vote.
I've emailed the letter writer (not a subscriber) who used salon to put out their message of shame that I resent their attempts to intrude upon my right to choose what is best for myself and my family. If their "heart goes out" to the family--why don't they leave them alone?
In my book, they are primitive, arrogant, ignorant and hypocritical--and don't know what they are talking about until it happens to them and they are faced with some similar decision. Meanwhile, don't try to force your agenda down my throat, or those who are currently faced with such a decision.
It is already evident from some of the posts what this family is exposed to by nature of the case being made public, and while I don't think that can or probably should be restricted, I think this reactionary "movement" needs to be fought by those who know better, or they will try to extend their control further in matters that are personal, and need to be protected in a civil society.
I am not sure any other issue makes me more angry, or I think is of greater importance in serving the rights of the individual at this time in this country.
Much of the initial coverage about Fort Hood turned out to be wrong. Is there anything wrong with that?
The accountability imposed by another country for the CIA's kidnapping and torture reveals much about our own.
Fox News' morning show plays to type, talking about whether Muslims in the Army should face "special debriefings"
The survivor and author is upset about comparisons some on the right are making to genocide
Once seen as a lunatic fringe, reactionary anti-women groups are courting respectability
Salon headlines in your mailbox
