Here's an excerpt from Singer's NYT article, A Convenient Truth:
Finally, there is the issue of treating Ashley with dignity. A Los Angeles Times report on Ashley’s treatment began: “This is about Ashley’s dignity. Everybody examining her case seems to agree at least about that.” Her parents write in their blog that Ashley will have more dignity in a body that is healthier and more suited to her state of development, while their critics see her treatment as a violation of her dignity.
But we should reject the premise of this debate. As a parent and grandparent, I find 3-month-old babies adorable, but not dignified. Nor do I believe that getting bigger and older, while remaining at the same mental level, would do anything to change that.
Here’s where things get philosophically interesting. We are always ready to find dignity in human beings, including those whose mental age will never exceed that of an infant, but we don’t attribute dignity to dogs or cats, though they clearly operate at a more advanced mental level than human infants. Just making that comparison provokes outrage in some quarters. But why should dignity always go together with species membership, no matter what the characteristics of the individual may be?
What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families.
Hi George, a healthy debate is a sign that people still take ethics seriously.
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Why isn't it "mutilation" when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints? Nobody ever died directly from scoliosis or back injury or misalined jaws or ear infection or weak knees. Sure, it's painful and life altering but nobody ever questions a parent about "barbaric" procedures to make corrections through surgery because this is what we expect from the medical profession.
ReplyDeleteLike Ashley's parents, I've been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. I can't imagine Elisabeth missing out on our annual backpacking adventures up the mountains when she reaches her maturation point in height or weight. I can't imagine her lying on the floor or in a wheelchair as an adult because she's too heavy to lift or transport into kyak or canoe or horse. I can't imagine her going through life without having the same opportunties of her siblings and peers. It would kill her to be restricted to a wheelchair or in supine position all her life.
I don't understand why is everyone against using medical breakthroughs for people if it will enhance their quality of life? As for using these same procedures so that parents can better assist their child, I don't see anything wrong here either. Go ahead and talk about what is "ethical" and what is "dignity" after wearing a diaper instead of using a toilet for one whole month relying on everyone else except yourself to change it. Go ahead and talk about what is "ethical" and what is "dignity" after tightly binding your body in a burlap bag having to rely on others to take care of you.
It's easy when they are young, but what about when our kids are 30? It's not like we're experimenting on our kids. People are blowing this "ethics" and "dignity" out of proportion and shoving their value systems and religion down our throats so much that they are actually interfering with progress. Most of the time, our kids are invisible to people. It is only when their disability becomes the focus that they are visible to others. And most times, what people see is what we dont' want them to see -- on object of pity.
Instead of people looking at our kid's emerging abilities, the focus is alway what they can't do which is often times used as the basis for planning their life instead of letting the parents and advocates having control. Develop a plan for kids based on what they can't do? This makes sense? Do we tell kids they can't play baseball because when they are 4 they can't hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability.
Here's my analogy. Let's say typical children are like apples growing on limbs from trees and our children are like carrots. The common need is light, nutrients, and water. The conflict arises for the carrot because the tree blocks out the light and zaps the water and nuturients. We wouldn't cut down the tree or let the carrots die from neglect, would we? But when the people who care for the apple trees try to tell the carrot growers what to do, this is wrong. We need to work together instead of working against each other.
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