My two cents...
Jan. 8th, 2007 05:33 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
miss_ytI feel compelled to weigh in on the Ashley case (and I'm not going to link it, because you'll know what I mean unless you've been living under a rock). I have been reading reports on her situation from various sources and mulling things over, including my own experience with developmentally disabled children.
My neighbors in New Rochelle, where I spent most of my childhood, had a daughter with severe physical and mental development problems. She simply stopped growing after she was four or five years old, had no more than the most basic motor skills, and could never talk. She died in her twenties, but by then my family had moved away. During middle school in Maryland, I fulfilled my community service requirements by working at a school for developmentally disabled children. All of these kids were lucky enough to have families (and other caretakers) willing and able to see to their needs, physical and emotional. What I'm saying is, I know some of the issues that the family and caretakers of developmentally disabled children have to deal with. The children needed help eating, going to the bathroom, just getting around. And while they might be kept as happy and healthy as possible through the efforts of their caretakers, they would never get better, or be able to live even semi-independently. It also goes without saying that caring for them and ensuring them a good quality of life would become more difficult as they grew older. And I don't think going through puberty, assuming they could even go through a normal puberty, would help them any.
With that in mind, I think that Ashley's parents made the right decision - in fact, I commend them for thinking that far ahead. If Ashley were to be put in an institution, her physical needs might be cared for, but there is no guarantee (and little liklihood) that her emotional needs would be met. She enjoys as good a quality of life as she possibly can as a child, with her family. People who say it is unethical to deny her the possibility of physical maturity or sexuality are missing the point that physical maturity would make her situation worse, not better (for all the reasons her parents outlined) and that, since she has the mind of an infant and little physical mobility, she would not be able to engage in consensual sex either, let alone be in a romantic relationship. It's not just a matter of making it easier for Ashley's parents to care for her, but of making her more comfortable and ensuring that she enjoys the greatest amount of health and happiness she can.
In Ashley's case, the kind of surgery she went through was the best treatment. If she'd been anything less than severely disabled, I would have been very upset over this decision. A person with autism, Down's Syndrome or only mild retardation would have about the same quality of life, perhaps better, if they were allowed to grow up, and it would be unethical to freeze their growth or sterilize them without their consent.1 In a case similar to Ashley's, such a treatment should always go through a rigorous ethical review. I don't like the idea of writing regulations or laws for this sort of thing, because it's best decided on a case-by-case basis.
On a parting note, let me say that I didn't initially agree with Ashley's parents' decision when I first learned about it, but at the time, I didn't have all the facts and of course I hadn't thought it over. I urge those who don't agree to give this another think-over themselves.
1If such individuals are sexually active and unable to make consistent use of birth control, then it's a good idea to raise the subject with them - an example of such a situation can be found in Riding the Bus With My Sister.
My neighbors in New Rochelle, where I spent most of my childhood, had a daughter with severe physical and mental development problems. She simply stopped growing after she was four or five years old, had no more than the most basic motor skills, and could never talk. She died in her twenties, but by then my family had moved away. During middle school in Maryland, I fulfilled my community service requirements by working at a school for developmentally disabled children. All of these kids were lucky enough to have families (and other caretakers) willing and able to see to their needs, physical and emotional. What I'm saying is, I know some of the issues that the family and caretakers of developmentally disabled children have to deal with. The children needed help eating, going to the bathroom, just getting around. And while they might be kept as happy and healthy as possible through the efforts of their caretakers, they would never get better, or be able to live even semi-independently. It also goes without saying that caring for them and ensuring them a good quality of life would become more difficult as they grew older. And I don't think going through puberty, assuming they could even go through a normal puberty, would help them any.
With that in mind, I think that Ashley's parents made the right decision - in fact, I commend them for thinking that far ahead. If Ashley were to be put in an institution, her physical needs might be cared for, but there is no guarantee (and little liklihood) that her emotional needs would be met. She enjoys as good a quality of life as she possibly can as a child, with her family. People who say it is unethical to deny her the possibility of physical maturity or sexuality are missing the point that physical maturity would make her situation worse, not better (for all the reasons her parents outlined) and that, since she has the mind of an infant and little physical mobility, she would not be able to engage in consensual sex either, let alone be in a romantic relationship. It's not just a matter of making it easier for Ashley's parents to care for her, but of making her more comfortable and ensuring that she enjoys the greatest amount of health and happiness she can.
In Ashley's case, the kind of surgery she went through was the best treatment. If she'd been anything less than severely disabled, I would have been very upset over this decision. A person with autism, Down's Syndrome or only mild retardation would have about the same quality of life, perhaps better, if they were allowed to grow up, and it would be unethical to freeze their growth or sterilize them without their consent.1 In a case similar to Ashley's, such a treatment should always go through a rigorous ethical review. I don't like the idea of writing regulations or laws for this sort of thing, because it's best decided on a case-by-case basis.
On a parting note, let me say that I didn't initially agree with Ashley's parents' decision when I first learned about it, but at the time, I didn't have all the facts and of course I hadn't thought it over. I urge those who don't agree to give this another think-over themselves.
1If such individuals are sexually active and unable to make consistent use of birth control, then it's a good idea to raise the subject with them - an example of such a situation can be found in Riding the Bus With My Sister.
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no subject
Date: 2007-01-08 11:14 pm (UTC)no subject
Date: 2007-01-09 02:07 am (UTC)no subject
Date: 2007-01-09 09:41 pm (UTC)Now that a potential perp knows she can't get pregnant, well... That might make it an easier target in his mind.
The only thing a hysterectomy can do is prevent pregnancy.
That said (and I wanted to be clear on that particular point), those in persistent vegetative states, et al., I have no trouble with the idea of sterilizing.
no subject
Date: 2007-01-09 09:52 pm (UTC)There is always some risk of sexual assault for just about anyone, but as
I'm also rolling my eyes at people who say that the right to sexuality should be paramount in every situation. I think there are a very few cases in which that isn't true, and this is one of them. After all, the purpose of all rights is to promote both life and quality of life: Ashley's quality of life will be better for this treatment. As I said before, though, the same would not be true of a person with mental illness or mild developmental problems, and I don't advocate that it should be applied universally even to people like Ashley.