| Author |
Message |
    
Yvettep
Veteran Poster
Username: Yvettep
Post Number: 1531
Registered: 01-2005
Rating: 
Votes: 2 (Vote!) | | Posted on Friday, January 05, 2007 - 04:50 pm: | 
|
Below are a couple of perspectives on the "Ashley Treatment" case. This is a case where parents have taken what many believe to be extreme measures in order to keep their disabled daughter from developing to puberty. What do you think?
http://brownfemipower.com/?p=790
http://thegimpparade.blogspot.com/2007/01/frozen-girl-discussed-on-tv-tonight.ht ml#comments |
Abm
"Cyniquian" Level Poster
Username: Abm
Post Number: 7472
Registered: 04-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 05:03 pm: |
|
Yvettep,
Well, assuming what's being done won't kill her, as frightening as what's being described appears, I cannot proffer a strong rebut to what Ashley's parents and doctors have/will do to her.
Can you? |
Yvettep
Veteran Poster
Username: Yvettep
Post Number: 1532
Registered: 01-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 05:07 pm: |
|
Let's say they advocated a removal of her limbs to prevent accidental injury and assist with greater ease of care. OK? |
Cynique
"Cyniquian" Level Poster
Username: Cynique
Post Number: 6487
Registered: 01-2004
Rating: 
Votes: 1 (Vote!) | | Posted on Friday, January 05, 2007 - 05:10 pm: |
|
I rather agree with the decision of Ashley's parents. They want to keep her pristine and spare her what her mind will deny her to love or to hate. Of course this procedure will also alleviate a lot of problems for her parents. But, she's a minor child, so her guardians should have the option to play god. |
Abm
"Cyniquian" Level Poster
Username: Abm
Post Number: 7473
Registered: 04-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 05:13 pm: |
|
Yvettep,
That's a good point.
I don't. I guess what I see here is an unfortunate human being who's quality of life is so profound stunted and restricted, it almost appear as though what they're doing won't really matter.
And, honestly, when I think whether I should criticize these people one of the first things I think is...Well. Abortion's legal. Ain't it? |
Yvettep
Veteran Poster
Username: Yvettep
Post Number: 1533
Registered: 01-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 05:25 pm: |
|
To be fair, you asked a question and instead of answering, I merely asked another question. Good teacher trick, but not fair, perhaps 
So here is my answer: I feel this is an interesting case from both a bioethical standpoint and the standpoint of where we draw the line in terms of the rights of parents. In the former area, I am generally suspicious of cases where medical procedures are performed on people without their full consent. In this case, we are not even talking about procedures that would save this child's life, but make care-taking easier and (if you buy it) improve her quality of life and prevent potential pain, confusion, and abuse. Those things, to me, do not justify these extreme measures.
In the other area, I am also generally suspicious of most attempts by society to place undue restrictions on what parents can decide on behalf of their children. I am equally suspicious of the adage "It takes a villiage..." because I think contemporary, Western societies (conveniently) misappropriate it: In the societies in which sayings of this type are found, "villiage" generally is synonymous with "family," or at least, with extended kinship lines. "Villiage" does not equal "government." So in that case I would be more inclined to allow whatever decisions are made by the parents--who I would be most comfortable assuming that they have the child's "best interests" at heart.
So, as with many other fascinating topics, with this one I am totally of two minds! |
Abm
"Cyniquian" Level Poster
Username: Abm
Post Number: 7474
Registered: 04-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 05:38 pm: |
|
Yvettep,
I'm not much of a bioethicist. Because we're playing GOD in so many places and ways (e.g., genome, cloning, abortion, organ/limb transplants, artificial insemination, hormone therapy, liposuction, rhinoplasty, etc.) now who has a right to say what should and shouldn't happen.
Frankly, Ashley was denied by chance, GOD or whatever you believe, the right and power to decide what's to become of her time her on earth. And, as you describe, since ultimately her parents are the one's who are going take care of her, they should - with, perhaps, some limitations - be allowed to decide what taking care of her will entail. |
Yvettep
Veteran Poster
Username: Yvettep
Post Number: 1534
Registered: 01-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 05:57 pm: |
|
They want to keep her pristine
This is part of the critique, Cynique. The assertion is that the parents are viewing their disabled child as an object and not a full human being. Many find such an attempt to shape her into a physical perpetual child (to match her assumed perpetual mental child-like state) troubling.
they should - with, perhaps, some limitations - be allowed to decide what taking care of her will entail
That is exactly the part that is of so much interest to me. What limits? Who decides? How should the parents and physicians be mandated to go so far but no further? If we decide removal of a uterus is OK, what stops us from saying OK to the removal of limbs? Or even euthanasia? In future cases, how "disabled" is enough to justify this kind of "treatment"?
now who has a right to say what should and shouldn't happen
IMO, all of us have--not only the right--but the responsibility to participate in these ethical and policy discussions! |
Abm
"Cyniquian" Level Poster
Username: Abm
Post Number: 7475
Registered: 04-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 06:03 pm: |
|
Yvettep: "That is exactly the part that is of so much interest to me. What limits? Who decides? How should the parents and physicians be mandated to go so far but no further? If we decide removal of a uterus is OK, what stops us from saying OK to the removal of limbs? Or even euthanasia? In future cases, how "disabled" is enough to justify this kind of "treatment"?"
There are no fixed, pat answers to what you ask. I think, instead, what is and isn't done will be subject to myriad legislative and judicial acts, the results of which will be a reflection of what's perceived to be most expedient to most of us at a certain point in time.
For example, there was a time and circumstances where it was considered very IMMORAL by MOST to abort a fetus. And to MANY, it still is. |
Lola_ogunnaike
Regular Poster
Username: Lola_ogunnaike
Post Number: 374
Registered: 10-2006
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 06:41 pm: |
|
I'ma freeze Cynique and her Alternate Personality, Mizury. |
Cynique
"Cyniquian" Level Poster
Username: Cynique
Post Number: 6490
Registered: 01-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 07:09 pm: |
|
Mzuri may be ol Cynique's "care-giver" but she's not me. So try another diversionary tactic, lo-lo. And, believe me, nobody would miss you and your evil twin igabo girl if you melted away. |
Lola_ogunnaike
Regular Poster
Username: Lola_ogunnaike
Post Number: 378
Registered: 10-2006
Rating: 
Votes: 2 (Vote!) | | Posted on Friday, January 05, 2007 - 07:14 pm: |
|
What was that smell? Some crusty-lookin' high yella toad has just released some powerful nasty stench from its dry-up body. Ewwwwwwwwwwwwwwwwwww |
Cynique
"Cyniquian" Level Poster
Username: Cynique
Post Number: 6491
Registered: 01-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 07:22 pm: |
|
Well, Yvette, conscientious parents exert all kinds of controls over their children who are not "mentally defective". They sometimes even supply them with birth control pills and they certainly attempt to prevent them from going astray by placing restrictions on their activites. But I do agree that the case in point is an ethical dilemma. |
Cynique
"Cyniquian" Level Poster
Username: Cynique
Post Number: 6492
Registered: 01-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Friday, January 05, 2007 - 09:29 pm: |
|
Nah, that's that ol Nigerian funk you're smelling, "Lolo". When's the last time you took a shower? Last week? I know, I know, you're trying to keep that skin from getting ashy. BTW, your "slams" are very unoriginal. I've heard them all before, almost-word-for-word. Watch it. You're slip is showing. LMAO. |
Mzuri
"Cyniquian" Level Poster
Username: Mzuri
Post Number: 2804
Registered: 01-2006
Rating: N/A
Votes: 0 (Vote!) | | Posted on Saturday, January 06, 2007 - 12:31 pm: |
|
When I first read the story about the little girl, I did not know that she was disabled. Once I was aware of her condition, I understood the parent's thinking. Obviously this was a difficult and heart-wrenching decision for the parents to make. As to the ethics question, if any of this were unethical, then the doctors wouldn't have performed the surgery. These types of procedures typically go thru an ethics review process prior to being approved. |
Yvettep
Veteran Poster
Username: Yvettep
Post Number: 1536
Registered: 01-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Saturday, January 06, 2007 - 09:22 pm: |
|
Obviously this was a difficult and heart-wrenching decision for the parents to make.
I agree.
if any of this were unethical, then the doctors wouldn't have performed the surgery.
Not so. "Ethical" is not something that is written in stone, but is determined by members of society. Physicians do things that large numbers of folks would consider "unethical" every day.
These types of procedures typically go thru an ethics review process prior to being approved.
Not necessarily. Especially in the realm of private medicine, when clients are paying out of pocket (e.g., IVF clinics) there may not be a review board overseeing any procedures. But even if a board did determine its ethicality, I repeat that does not make it "ethical" as ethics is what is determined by informed citizens contributing to public discussions. Lots of stuff gets approved by ethics and other review boards that are later deemed COMPLETELY heinous. THe Tuskegee experiment, for example. Or the recent cases of experimenting on children in foster care without their biological parents' consent or knowledge or independent legal representation for the children. |
Yvettep
Veteran Poster
Username: Yvettep
Post Number: 1537
Registered: 01-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Saturday, January 06, 2007 - 09:30 pm: |
|
conscientious parents exert all kinds of controls over their children who are not "mentally defective".
You're right, Cynique. There have even been more permanent measures taken besides the ones you mention, for example involuntary sterilization. I am not an expert on the numerous disability rights movements, but I am aware that this is a huge area of concern. Just as we could sy we have little right to tell these parents what to do if we ourselves are not faced with raising a child with a severe disability, we could say that we have no right deciding what is "quality" quality of life for a disabled person when we ourselves are traditionally abled. I have heard analogies to culture in these cases: It is as if folks from a dominant culture (i.e., "the traditionally abled") are being put in charge of making decisions for minors from a different, oppressed culture. Can they really understand? Can they really put their biases against the disabled aside--biases that they have soaked up over the course of a lifetime?
I do not know the answers, but I do find the questions interesting. On this topic I'll post a related recent story. (If I can find it!) |
Yvettep
Veteran Poster
Username: Yvettep
Post Number: 1538
Registered: 01-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Saturday, January 06, 2007 - 09:46 pm: |
|
I couldn't find the article I wanted on this topic, but here is one discussion about it. This has also been an issue with parents with genetic forms of drawfism using preimplantation genetic diagnosis to select for embryos with drawfism... From http://jme.bmj.com/cgi/content/full/28/5/284
Deafness, culture, and choice
There has been a great deal of discussion during the past few years of the potential biotechnology offers to us to choose to have only perfect babies, and of the implications that might have, for instance for the disabled. What few people foresaw is that these same technologies could be deliberately used to ensure that children would be born with (what most people see as) disabilities. That this is a real possibility, and not merely the thought experiment of a philosopher, is brought home to us by the decision of an American lesbian couple to select a deaf sperm donor in order to maximise the chances that their children, Jehanne and Gauvin, would be deaf like them.1 Their choice has sparked controversy, not only among medical ethicists, but in the opinion pages of newspapers across the world. Ought parents be permitted to make such choices?
If the parents of Jehanne and Gauvin have done anything wrong, it must consist in violating their child’s right to an open future—limiting its future potential for choice.2 But what does it mean to respect this right?
From the moment a child is born, her parents are making choices for her, which will powerfully shape her future. They will decide what kind of education she will have, what religious experiences, from among what group she can select friends. Thereby, they profoundly mould the person she will be and the life she will have.
When this activity is carried out within certain, ill-defined, limits, it is in no way objectionable. It is not merely a contingent fact about human beings that they must be educated in one way or another, and that this education will forever shape their future selves. It is, also, a profound metaphysical fact that freedom is necessarily constrained. If we did not bring values and expectations to our choices, we would have no basis upon which to make them. Thus, what is seen from one angle as the limiting of a child’s future choices is, from another angle, the constitutive condition of her having choices at all. Only from within a certain, necessarily unchosen, framework can the child begin to make something of what she has been made.
Whether a parent’s decisive choices on behalf of her child amount to an infringement of her right to an open future is, therefore, difficult to determine. We have no way of marking a precise boundary, within which such choices are the necessary preconditions of the child’s own decisions, and beyond which too many options are foreclosed. All we can do is try to make some sort of judgment.
Culture and compassion
The recent controversy surrounding the choice, by a deaf lesbian couple, to have children who were themselves deaf, has focused attention on the ethics of choosing (apparent) disabilities for children. Deaf activists argue that deafness is not a disability, but instead the constitutive condition of access to a rich culture. Being deaf carries disadvantages with it, but these are a product of discrimination, not of the condition itself. It is, however, implausible to think that all the disadvantages which stem from deafness are social in origin. Moreover, though it may be true that being deaf carries with it the important compensation of access to a rich culture, no physical condition is required for such access. Cultures are simply the kind of things to which we are born, and therefore to which the children of deaf parents, hearing or deaf, normally belong. Thus these parents are making a mistake in choosing deafness for their children. Given their own experience of isolation as children, however, it is a mistake which is understandable, and our reaction to them ought to be compassion, not condemnation.
Does choosing deafness overstep this imprecise boundary? Deaf activists often argue that deafness is not a disability. Instead, it is the constitutive condition of access to a rich and valuable culture. For this reason, they might claim, choosing deafness falls well within the bounds of the permissible; it is a choice which opens up as many and as valuable options as it closes down. They cannot deny that, on average, the deaf do much worse than the hearing on a range of significant indicators of quality of life: unemployment, education levels, income, and so on. But they argue that this is a consequence of discrimination against them, overt and covert, and not of deafness itself. If society were structured to allow for the full participation of the deaf, they maintain, the negative effects of deafness would be entirely eliminated. In this sense, deafness is strictly analogous to blackness; blacks, too, do worse, on average, than their white peers, but this is an artefact of discrimination, not a consequence of skin colour.
If all the disadvantages which stem from deafness were traceable to discrimination, or even if they could all be eliminated by thoughtful planning, in the manner in which we can eliminate some of the disadvantages suffered by the wheelchair-bound by designing buildings with ramps, then this claim would be vindicated. And indeed, there is a great deal we can do to eliminate such disadvantages. We can caption television broadcasts, we can provide sign interpreters, and so forth. The internet has revolutionised the lives of many of the deaf, making communication, via email, as easy for them as it has been for most of us ever since the invention of the telephone. Though much has been done, however, and a great deal more could be achieved, we can expect the deaf always to be at some disadvantage. We are, in many ways, a logocentric culture—one which is centred around the voice. The deaf will always be cut off from the buzz of conversation, always restricted to a narrower range of jobs, always slightly alienated from the mainstream of political, social, and cultural life. Deaf culture may have its compensations, but they cannot entirely make up for this estrangement.
Choosing deafness is, therefore, choosing a real (though not an especially severe) limitation. To that extent, deaf children have their future somewhat narrowed. Moreover, there is a sense in which this narrowing is uncompensated. For the children of the deaf, access to deaf culture is not the compensation they receive for their disability, it is their birthright. Culture, like language, is normally passed on without effort. Any baby, hearing or deaf, will pick up sign language and speak it as a first language, so long as it is exposed to it regularly. Thus, this couple did not need to make any special effort to ensure that their children would share their culture. A hearing child will pick up sign and a spoken language, just as the children of immigrants typically learn the language of their parents and the language of their adopted homeland. The hearing child of deaf parents might be said to have a maximally open future, since she participates, as a full member and not merely an onlooker, in two cultures.
The desire of parents to have their children share their culture is perfectly reasonable. It enhances empathy on both sides, enabling parents to assist their children in negotiating the road to adulthood that much more surely, and potentially increasing the satisfactions upon both sides. But deaf parents do not need to choose to exclude their children from the hearing world in order to include them in theirs; both are open to them. Though these parents might be guilty of restricting the range of their children’s options to some extent, however, we ought not to be too hasty in condemning them. We ought to remember the extent to which they, like many other deaf people, felt isolated and alone as children, cut off not only from their schoolmates but also from their own family. They fear a similar fate for their children; that a nearly insuperable barrier will divide mother and child. In reality, their fear is misplaced. But it is comprehensible. Given this fact, and given the fact that the disadvantages which their children will suffer are likely to be relatively mild, we ought to react to them with compassion and understanding, not condemnation.
|
Cynique
"Cyniquian" Level Poster
Username: Cynique
Post Number: 6501
Registered: 01-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Sunday, January 07, 2007 - 12:56 pm: |
|
Interesting. I also recently read an article about this dwarf couple who, when they start a family, want the genes of the fetuses to be tampered with so that their children will be born dwarfs because they want their kids to look like them. |
Yvettep
Veteran Poster
Username: Yvettep
Post Number: 1539
Registered: 01-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Monday, January 08, 2007 - 10:04 am: |
|
want the genes of the fetuses to be tampered with
So far, this is not possible. What they can do is undergo IVF, then choose from the existing embryos only to implant those that are diagnosed with the genetic mutation for dwarfism. This is what happens in other cases of PGD (preimplantation genetic diagnosis)--except the other way around: IVF + selecting for embryos that do NOT have whatever genetic mutation.
|
Cynique
"Cyniquian" Level Poster
Username: Cynique
Post Number: 6535
Registered: 01-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Monday, January 08, 2007 - 11:30 am: |
|
OK, gotcha. Wanting "the genes to be tampered with" were my words because I didn't recall what procedure the article said was available to try and achieve the wishes of this couple. |
Abm
"Cyniquian" Level Poster
Username: Abm
Post Number: 7532
Registered: 04-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Monday, January 08, 2007 - 01:19 pm: |
|
Yvettep,
The cut-off could be at intentionally giving to another person what the majority of us would classify as a disability (e.g., blindness, dwarfism, deafness, etc.) IF it is clear that doing such will unnecessarily add encumbrances to one's life.
'Course. I guess being ABORTED might qualify as such. |
Renata
Veteran Poster
Username: Renata
Post Number: 1674
Registered: 08-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Tuesday, January 09, 2007 - 02:38 am: |
|
I have a relative with a severe handicap and he's like a 2 year old. Problem is that he's over 40 and has enough size and strength to injure his caretakers. |
Urban_scribe
AALBC .com Platinum Poster
Username: Urban_scribe
Post Number: 287
Registered: 05-2006
Rating: N/A
Votes: 0 (Vote!) | | Posted on Tuesday, January 09, 2007 - 04:38 pm: |
|
My neighbor's son is 17 and has severe Downs Syndrome. He's confined to a wheelchair and all he can do is grunt.
Every time I look at him, it makes me reflect on all the times I've told my children to "sit down and be quiet." I'm so glad they're of normal health, and can run around and make noise.
Thing is, he, (we'll call him Joe), has racing hormones, which is to be expected at his age. Last week, I was chatting with his mother and popped a piece of Trident White in my mouth. Joe started grunting real loud, so I figured he wanted a piece. I asked his mom was it okay, she said yes, and I stepped close to Joe to give him some gum. Homeboy grabbed my ass. I felt so sorry for his mother - her face turned RED, and she couldn't stop apologizing to me. Joe wanted a piece all right!
But that made me feel so sad for him; knowing that, odd are, he'll never find someone and settle down and have a family. |
|
Email This Page