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January 06, 2007

Parents stunt growth of profoundly disabled daughter

Amanda has an excellent post about Ashley, a profoundly brain-damaged girl from Seattle whose parents chose to stunt her growth so that they can continue to care for her at home.

Ashley's parents made their decision in conjunction with her doctors and a the 40 members of the hospital's bioethics committee. Not surprisingly, the move has has generated a great deal of controversy. At first glance, it seems absurd to stunt a patient's growth in order to facilitate home care. Why not give her parents more help? Isn't it obscene to remake a person's body for the convenience of her caregivers?

However, upon closer examination, it appears that Ashley's parents made the right decision in this very unusual case. The critical question is whether this treatment is for Ashley's benefit.

It's important to appreciate how severely disabled Ashley is when assessing the appropriateness of her treatment. Her brain literally stopped growing shortly after she was born. She can't stand, sit, speak, or shift her position in bed. She has the mental age of a 3-month-old. Her parents call her a "pillow angel" because she stays exactly where she's put until someone readjusts her. She will never get better. (Creepy phrase, I know, but it seems to be an accurate descriptor of Ashley's level of functioning.)

Ashley can feel pain, but she can't say where she hurts, or even point to the sore spot. She can also experience boredom, which is a chronic problem because she's confined to her bed for most of the day.

Ashley's parents have devoted their lives to giving their daughter the best possible life at home. They are determined to keep her close, as an integral part of the family. Ashley now weighs 65 pounds and her parents are already struggling to lift and carry her. Doctors had estimated that Ashley would eventually grow to 5'6" and weigh at least 125 lbs. Thanks to her treatment, Ashley is expected to be about a foot shorter and 50 lbs lighter, which makes all the difference in terms of her parents' ability to care for her at home.

If Ashley had gotten much larger, she probably would have had to be institutionalized. Furthermore, Ashley has a long life ahead of her, and her parents worry about what will happen when they get older.

To stop Ashley's growth, her doctors used high-dose estrogen to induce early puberty. Unfortunately, early puberty would also have saddled the 9-year-old with breasts and periods. In consultation with physicians and bioethicists, Ashley's parents decided to have their daughter's uterus and breast buds removed in order to spare her the discomfort menstrual cramps and large breasts, not to mention the risk of certain hormone-sensitive cancers that run in her family.

It's important to understand that the breast and uterus surgeries were done to prevent the side effects of the estrogen treatment, not as ends in themselves. There's room for debate about whether these secondary procedures were the best solutions to the side effects of estrogen therapy, but they seem defensible relative the alternatives.

The doctors didn't just remove the organs capriciously. Some critics accuse Ashley's caregivers of mutilating their daughter to assuage their own discomfort with the prospect of her sexual maturity.
In fact, Ashley's breasts and periods would have impaired her quality of life in various ways, without benefiting her at all.

Some critics might be more comfortable if Ashley's breasts had been left in their "natural" state, but Ashley herself would have suffered. She had a history of nipple pain before her hormone therapy, and her parents reported that her sore chest made her uncomfortable in her wheelchair. Larger breasts might have been a big impediment to a more normal life, as the wheelchair is Ashley's only way to experience the world beyond her bed, and she has already experienced considerable discomfort from the chest straps on her chair.

As anyone with breasts can attest, they sometimes get sore and need to be repositioned. For most women, that's a trivial matter. Stand up, roll over, stretch, change into a comfy sweatshirt--problem solved. Remember, though, that Ashley can't even roll over in bed. Imagine being stuck, lying on top of sore boobs, helpless to move or explain what's wrong.

Contrary to some sensationalized media reports, Ashley will not be consigned to a child's body. Her ovaries are intact. So, she will continue to have normal monthly cycles, just without menstrual cramps or bleeding. She will develop pubic hair, hips, and other secondary sex characteristics. The breast-bud surgery left her with normal nipples and intact chest tissue, save the two almond-sized clumps of milk duct tissue that doctors extracted through incisions in the skin. So, Ashley will be a 4'6" woman with a flat chest, instead of a 5'6" woman with big breasts.

Ashley's parents explain how staying shorter and lighter will preserve their daughter's quality of life on their blog:

The main benefit of the height and weight reduction is that Ashley can be moved considerably more often, which is extremely beneficial to her health and well being. Currently, one person can carry Ashley, versus requiring two people or a hoisting harness and ropes, should she have grown larger. As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long. In addition, the increase in Ashley’s movement results in better blood circulation, GI functioning (including digestion, passing gas), stretching, and motion of her joints.

Given the severity of Ashley’s disability, an average height contributes nothing to her quality of life. Ashley’s brain damage is so severe that her doting parents aren’t even sure she recognizes them, let alone anyone else. It's safe to assume that she will never feel awkward or embarrassed because she doesn’t meet some external ideal of adult height.

Being taller and heavier would only make Ashley's life worse. A larger Ashley would have been at greater risk of bedsores and more likely to be injured in the course of lifting and carrying. Obviously, height attenuation isn't the only way to manage bedsores, and full-sized adults can be carried safely. On the other hand, bedsores are a constant battle even for immobile patients who get the best care. For example, quadriplegic actor Christopher Reeve died of a bedsore-related infection. If you were a parent, wouldn't you at least consider a painless treatment that could improve your child's safety and comfort for life?

Ashley's treatment has been attacked as a kind of eugenics. In fact, Ashley's hysterectomy had nothing to do with eugenics. The pseudo-science of eugenics is about preventing people with "inferior" genes from reproducing in order to improve the health of future generations. In this case, everyone agrees that Ashley shouldn't be having sex or getting pregnant. Protecting defenseless people from rape and forced pregnancy has nothing to do with micromanaging the gene pool. This is almost beside the point, but Ashley's condition isn't even genetic! So, no eugenics here.

Some people argue that Ashley's treatment was just socially-sanctioned abuse of the disabled. However, these critics are uncritically appealing to ability-centered assumptions of what constitutes a "good" or "healthy" body. These assumptions hold for the vast majority of humans, and even for most people with profound developmental disabilities. But Ashley’s a tragic exception. The fact that her needs are very different from someone with severe Down's Syndrome or advanced Alzheimer’s disease is no reason deny her treatments that will improve and extend her life.

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Get ready for the disability rights drive-bys....

Get ready for the disability rights drive-bys....

Well, it's what she deserves for using that patriarchal, hegemonic, imperialist, oppressive "science" to back up her arguments. Really, I don't understand why you can't see that.

Some critics might be more comfortable if Ashley's breasts had been left in their "natural" state, but Ashley herself would have suffered.

Thank you for putting this so succiently. This is why I'm really deeply troubled---people are falling all over themselves to condemn Ashley's parents for doing something "convenient". However, these people don't stop to see how they're committing that sin times 3, by demanding that Ashley's treatment be shaped for their ideological comfort rather than her comfort.

I hope that not many people are condemning Ashley's parents. It does seem as if they've taken all decisions with sensitivity and for Ashley's best interests.

Oh, there's people on my thread who are calling to have them thrown in jail, which will be very good for Ashley, since it would hurry up the chance that she'll be permanently left in an institution where she is barely ever cuddled and never held.

Thank you so much for this post. I've been flabbergasted at the virulent criticism of these parents who had the courage to let the world know of this treatment because it might be of benefit to others. They could have chosen not to reveal this.

There was a good comment on the Scientific American blog pointing out that there seems to be very little criticism of the parents' decision to use medical means to feed Ashley so she won't starve to death. The commenter reminded us that Ashley's natural state is dead.

these people don't stop to see how they're committing that sin times 3, by demanding that Ashley's treatment be shaped for their ideological comfort rather than her comfort.

And that, in a nutshell, is my problem: The point of a disability rights agenda is to further rights, respect, treatment, and opportunities for the disabled. The agenda serves the people who created it--not the other way around. What I'm seeing in your thread, Amanda, is people proposing increasingly far-fetched hypotheticals to make Ashley's case fit that agenda, and no attempt to consider whether the agenda fits Ashley.

What if the parents wanted to cut off her legs instead of her breasts? What if Ashley weren't really mentally 3 months old? What if she were this, what if she were that? But that's strawmanning the whole discussion, because she isn't any of those hypotheticals.

When you have to substitute hypothetical circumstances that make you more comfortable, more confident of your position, for the facts of the case, you have already conceded right there that you aren't actually interested in the facts of the case, nor in the particular individuals involved in it--least of all Ashley.

Well I'm sad to hear this. I would say that it shows what a drag it is when the public gets to stick its face in a family's business like this, but I guess if that's unavoidable, then at least the flip side of it is that there's some compassion being shown for them too. I hope each member of the family has as happy a life as they can have.

By the time you get deeply into Amanda's thread, you start feeling like you have wandered into wingnut anti-abortion territory with all the misrepresentations of what this child is.

This child is at best a step or so better off than Terri Schiavo, but they keep acting like it's no different than, say, a Down's Syndrome child. Their argument is fundamentally dishonest. It's the same kind of crap that I used to hear from my wingnut co-worker every day. You aren't 2 sentences into the discussion before they shift the goalposts 95 yards.

***There was a good comment on the Scientific American blog pointing out that there seems to be very little criticism of the parents' decision to use medical means to feed Ashley so she won't starve to death. The commenter reminded us that Ashley's natural state is dead.***

I said something along those lines...It wasn't taken very well.

This “gimp” is not quite sure what to make of this.But seems to me ,the decision to go through with the procedure was based more on the needs of the abled caregivers.Than that of the disabled girl.

For one to have to make such decisions based on ones ability to care for a loved one,whether due to economics or other factors is just to hard for this page to imagine...
I understand linking back to my blog might be a violation of blog comment ethics,but I am feeling lazy.
http://gimpchronicles.com/?p=154

First and foremost I praise the mother for her dedication and love for her daughter and her efforts on her behalf. I do not know the case well enough to criticize and think, here, as in so much of the debate on life and health issues, the rest of us should butt out and let the loved ones do what they think is best, except where the decision is craven and selfish and offensive to human dignity, which this is not.

Instead I raise the following questions about some of the assumptions regarding Ashley’s treatment, which the family is actively pushing as a template for others with similarly affected children. They do this by blogging the whole procedure, and self-consciously giving a name, the Ashley treatment, to it so as make it “easy to remember and search for.”

The implication is that what was done makes Ashley’s life better and that other similar children who do not receive such treatment, are thus, worse off. Due to the ignorance or lack of care or resources of their parents? I think not. Rather, much of what Ashley’s family wraps up in a scientific and medical, even ethical, guise, comes down to guesswork and assumptions. A guess that the family is certainly entitled to make, and good for them that they have thought this through so well and lovingly. But if the family decided to care for Ashley without all the hormone manipulation and surgery could we say that they had foregone necessary procedures? These decisions are as personal as a woman deciding that her life would be better with smaller breasts. Not for me to say. But we dress this up as a medical issue only to get insurance to pay for it. The opposite decision can’t be criticized either.

So the following questions are not meant to condemn this loving, stressed, brave, diligent, and intelligent family, but rather the attempt by the medical professionals they consulted to make a personal call on the part of the family into some sort of standard of care for others.

Valerie and I have four healthy children, the youngest 18 years old, and we have had living with us a parade of about a half dozen other children who were having problems in their homes, for a period of some years in addition. I am stressed and exhausted. Yet I know what I’ve done doesn’t compare to the devotion and dedication of a mother like Ashley’s.

Professionally I have spent more than two decades caring for the disabled, including living for 15 years on the main campus of the oldest, and largest (I think) provider of residential services to the disabled in this country, even serving, against my objections, as medical director. Daily for years I have lifted from wheelchair to exam table (sometimes staff would help, I never asked), treated bedsores, urinary tract infections, behavior problems, and dealt with the complex issue of sexual relationships among adults with limited intellectual abilities. I have been to birthday parties, counseled intellectually impaired women on the care of their children, and signed more death certificates than I care to recall. I have also dealt with mothers like Ashley’s 40 years later, in their 70s, when lifting even a 60 pound child is out of the question. And advised them on the law, ethics, and mechanics of seeing that their precious children don’t survive them to be left to the vagaries of our outrageously inadequate and underfunded social system. Another decision I feel the loved ones are entitled to make. It is in this spirit, and with this intimate knowledge of the issues that the following critique is offered.

The issue of growth limitation by early closure of the epiphyses with hormone therapy is the mirror image of the debate regarding the use of growth hormone to make short statured, but normal, children taller. The difference being that much of the stigma from short stature is a comment on our discriminatory society, and not an issue of care, as in Ashley’s case. A number of objections can still be raised. First is that the expected benefit is less than is billed on Ashley’s mother’s website. Certainly obesity can cause an increase in bedsores, especially in the immobile, but that can be controlled in someone who can’t feed themselves. The notion that height, per se, (and it is pure speculation that Ashley’s adult weight will be diminished) can cause increase in bedsores is debatable. But the principle caveat is that this is entirely experimental. I don’t know what has caused Ashley’s condition, and I would bet that her doctors don’t either. Extrapolating from our limited experience prematurely closing the epiphyses of tall girls with estrogen to a girl with Ashley’s condition is fraught with uncertainty. Will there be unexpected side effects? Seizures? Obesity? Cancer? As for the proposed benefits to lung and urinary function if Ashley is shorter: nonsense. To my knowledge there is no consistent literature on this topic and this can be chalked up, as much of the Ashley treatment can be, to wishful thinking.

The alternative, which will have to be invoked regardless of Ashley’s size, if the parents intend to care for her when they are in their seventies, is a Hoyer lift, and other such expedients. Preventing bedsores will depend far more on frequent turning of Ashley, as her mother is well aware, than on her final height.

Removing her uterus and her breast buds are also based on assumptions and hopes that may not be realized. Giving the reason that dysmenorrhea and cancer will be avoided could be extended to ovarian removal on the grounds that it may mitigate PMS and the more deadly ovarian cancer. Again, is this for the Ashley’s benefit, or because a woman with breasts and menstruation is not such a little pillow angel? A simple tubal ligation would have been just as effective as a means of birth control. It could be argued that any woman who intends to have no children could have their breasts and uterus removed to lower the risk of cancer without diminishing their functioning. But how do either of these surgeries?

I think much of what gives those in the disability rights movements pause is the history of the eugenics movement with its sterilization of those who “shouldn’t” breed, and the more recent push to impose “normality” on those who deviate from it with everything from surgery for those with Down syndrome to make them look more normal to overmedicating those with deviant behaviors to various strategies to change height. Ironically, of all the interventions undertaken on Ashley’s behalf, a simple laparoscopic tubal ligation would have been the one with the most proven benefit, and least risk.

While the medical benefits that are proposed by the doctors are untested and uncertain, there is a theme in the procedures chosen; they serve to keep Ashley a little pillow angel so the mother doesn’t have to face the dread day when she grows into a woman and is not such a cute little child. If only they could stay small forever. Now they can. The mother has an understandable, even laudable, empathy with her child. But it is not necessarily true. She writes: “Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers”, without a trace of self-awareness that she doesn’t know what it is like to be Ashley, either. Indeed, the mother knows more about my thoughts and feelings, having a brain similar to mine, than she does about her own child’s. She says: “Ashley’s Mom had had a C-section and knew first hand how Ashley would feel after surgery.” Again, only in her imagination. She has little clue how Ashley perceives pain. When the mother had her c-section, she knew what was happening and why. From Ashley’s point of view, she was scooped up one day from the pleasant environment her family has created and subjected to pain and suffering for no reason she could comprehend. And if these interventions are widely emulated, we will see morbidity and even mortality from the procedures, however lucky Ashley was to emerge without physical injury.

Again, I say none of this to imply that Ashley’s mother has done the wrong thing. This was her call and she clearly acted with careful deliberation. But when we undertake to apply life altering surgeries and medical therapies to those who can’t speak for themselves, we have the duty to be rigorous in our critique of our motives so we don’t spuriously find reason to do what is right for us, not them. These therapies for Ashley are experimental. I praise the mother for opening her private life for others in similar predicaments to learn from. I’m sure she will keep us posted on how Ashley does. My best wishes and most earnest respect to this family for their intelligence, devotion, and more than anything, hard work, in caring for the beautiful and fortunate Ashley. I only ask for respect for the risks of untested surgeries and treatments on the part of others who are considering following this mother’s example. Primum non nocere.

Thanks to Lindsay, again for hosting another of my rants. I will probably cross post this on Amanda's site as I first read about this there, honestly came here because Amanda is battling spam from gambling sites and I couldn't access Pandagon.

I have worked as a teacher of children and adolescents with severe disabilites for over 20 years - and I have taught children who's movements were limited to eye blink, but none of these children were operated on to have their growth limited. Good electric hoists are easy to use, take up moderate space and the cost may be covered by hospital grants, volunteer agencies, or by the health system here in Canada. I think that it is flawed thinking to choose to invade a person's body for the convienence of the caregivers or for health issues that may or may not occur in the future. I don't buy the idea that breasts and moderate growth are sufficient reasons for operating on a child who cannot understand or consent to the pain and confusion that she is about to be subjected to. I think that people who have disab ilites will totally reject your point of view.

Linda, can you say more about the types of technology that are available for lifting and moving totally disabled people?

Given the right resources, do you think it would be possible for Ashley's parents to give her the same quality of life as a full-sized adult as they do now?

If she were my daughter I'd do the same things.
She can't communicate a wish to die or live.
That said, these treatments have to mark some kind of watershed in... in...
Also see http://www.julianawetmore.net/pictures.php

"I think that people who have disabilites will totally reject your point of view."

I doubt it, Linda. At least in Amanda's thread, people with disabilities or who had to care for the disabled were far more likely to give the parents the benefit of the doubt than people who had no experience.

When my grandfather was dying of Parkinson's, we could have had a feeding tube installed that would have kept him alive longer. If it would have enabled him to recover and eventually get enough strength to get off the tube, we would have done it in an instant. But that wasn't going to happen. As hard as it was, we let him die sooner. Other families would and have made different choices in the same situation.

Now, what was helpful was my grandfather had made his wishes known and had a living will and DNR. But even with his blessing, it was a terrible decision to have to make, and even though my mother and I are convinced we did the right thing, it's still not easy.

Ashley is incapable of making these decisions. She will never be able to make these kinds of decisions. Her parents have to make them for her. It's not a responsibility I would wish on anyone, but until you are in such a state, I don't think you have any right to judge them.

They went before a panel of 40 bioethicists, and that's good enough for me.

Amanda's thread also had a poster who suggested that disabled people should have been involved in the decision-making process, which really creeps me out. Should fundies be invited to weigh in on whether or not someone should be allowed an abortion? It's a medical decision--only the patient or guardian and medical professionals should be involved.

I don't think they are advocating this procedure for everyone, but for people who are similarly affected. They say as much on their site. How many people are this severely retarded?

Not many. And there's where the strawman hypotheticals come out. My younger brother has Down Syndrome. Anything like the Ashley Treatment for him would be torture. And that's the point--my brother is not Ashley. Ashley is not my brother. Ashley is a human being, not a hypothetical case. Ashley is what's important in this situation, and it seems to me that Ashley is the number one concern of her parents.


Amanda's thread also had a poster who suggested that disabled people should have been involved in the decision-making process, which really creeps me out.

You and me both. And 80 or so comments after I first solicited a response like this, I still haven't had any parents come forward to say how pleased they'd be to surrender such a decision to the disabled commmunity.

I think that the quality of life is so poor that in the case of ashly she cannot think and and should have been euthanized. I know this sounds very cruel... and I don't think this would apply to most people with disabilities. But preserving the lives of people who have no thoughts or consciousness is absurd. Micheel Schiavo had to fight to let his wife's like end because she rightly indicated that such a life was simply not worth living.

I find the entire effort to preserve Ashley's life perverse, even if the motivation may be from kindness. Life is not sacred. All living this die and we need not worship life in such an irrational way. It is truly MORE compassionate to let/assist the death of the Ashleys who are born into a life of suffering... nothing more than suffering.

It could be argued that any woman who intends to have no children could have their breasts and uterus removed to lower the risk of cancer without diminishing their functioning. But how do either of these surgeries?

Except that removing fully-developed breasts and breast tissue is a MUCH different procedure than removing breast buds. It's the difference between an almond and a cantaloupe, with similar recovery times.

I completely understand why disabled people and disability advocates are uncomfortable with the parents' decisions. I really do. I think it's a good thing that they had to jump through many, many hoops to get to the end result. I'm glad that they were grilled by a 40-person ethics board and had to defende their decision.

Most importantly, I think that Ashley's case should not be used as a precedent of any kind. Anyone else who wants to have an "Ashley treatment" for their child should have to go through the exact same tough process that her parents did before it would be done. It is clearly NOT something that should be done lightly, or even contemplated lightly.

I think we are back in Terri Schiavo territory, in this way: we are once again discussing who should be allowed to make health care decisions, the disabled person (or his/her advocates/caretakers) or outsiders? People are outraged that her parents made this decision (with their doctors' support) but I have to ask: if the parents cannot make these decisions, who can? Do we really want to go back to the days where a board of "impartial" people who barely read the case files in front of them would willy-nilly make decisions about disabled people's lives? Decisions should be made by the disabled person him/herself, if possible, and by their caregiver, if not. If the caregiver is found to be abusive or neglectful, they should lose custody.

But I think that, overall, history has shown us that medical care decisions -- whether abortion, disability, or end-of-life -- are best made by the people closest to the decision. Period.

I think that the quality of life is so poor that in the case of ashly she cannot think and and should have been euthanized.

Quality of life is a difficult question. Personally, her quality of life doesn't sound bad at all to me. She's comfortable, she's not in pain, she has people who love her.

You're thinking about how YOU would feel if you, yourself, were suddenly in the same physical position as Ashley, but with your current level of consciousness and with the knowledge of what your life used to be like before you were disabled. That would be, to many people, a hellish existence.

But Ashley has no awareness of another way to be. She has the awareness of an infant: hot or cold, light or dark, comfortable or uncomfortable. If she's never known another way of life, it's hard to argue that her life is terrible. It may seem terrible TO US, because we are fully aware. She is not.

But seems to me ,the decision to go through with the procedure was based more on the needs of the abled caregivers.Than that of the disabled girl.

I've seen a lot of variations on this, and I think there's the zero-sum fallacy going on. It's assumed outright that something done for the good of the caregivers must be bad for her by definition and vice versa. That's the sacrifice fallacy that is often pushed on women, which is the idea that unless women are suffering, then they are stealing from their husbands, family, etc. It's completely untrue. For instance, wingnuts believe that if a woman does well for herself, her children will suffer. But research shows that women who have more education tend to do better by their children. Same with income of their own. http://ezraklein.typepad.com/blog/2007/01/by_neil_the_eth.html

Thankyou for writing so well about this matter.

I got into a bit of a fight today on a "feminist" site (who I feel were manipulating the case to their own ends) and wish I had been able to put my point across as well as you have.

I've blogged about my experience with this here if you want to have a look.

http://newsuk.wordpress.com/2007/01/07/feministswhat-womens-spacethe-margins-wont-publish/

Best wishes.

Ashley's parents made their decision in conjunction with her doctors and a team of 40 bioethicists.

A small but important point: an ethics committee or board is not made up soley of bioethicists. It is comprised of doctors and surgeons, social workers, physical therapists, psychologists, nurses, ethicists, administrators, and people from various lay groups (such as disability advocates). Ethicists guide the process, but their expertise alone would not be sufficient to make many of the decisions or consultations made by an ethics board - they need to know what social support is available, what the community response might be, what alternatives are, and so on.

That said, I think it a bit strange how reviled this girls parents are on some of the "feminist" blogs. To say that the needs of her caregivers are not important is to say that the health, wellbeing, and safety of her mother and father are irrelevant. This sounds just like those who would ban abortion with no exceptions. Regardless of the motives for such assertions, the end message is one of punishment by preventing necessarily selfish behavior in a drastic situation. Abortion of a life-threatening pregnancy is necessarily selfish behavior in a drastic situation. Stunting of a child to keep her a size which maximizes her parents ability to lift her (and thus enhance her quality of life) may be selfish, but it is necessary selfishness in a drastic situation.

This does seem like the Schiavo situation again in a lot of ways, in that you have outraged holier-than-thou moralists blathering on and wanting interference in the rights of the people in charge of those afflicted.

No matter if the parents had chosen this route or not, I can't imagine not supporting them. Apparently, some not only can, but feel the need to.

Good point about ethics committees, Ms Kate. I fixed the original post.

My uncle is on the ethics committee for Riverview Hospital in British Columbia, Canada--as far as I know, he's the only professional ethicist on the panel.

The most frustrating posts in this debate seen to be from people who live with/care for other people with disabilities. It's amazing how these people have convinced themselves that their struggle to deal with their disabled friends/family is the only acceptable way to approach this problem.

The problem: A disabled person who requires a great deal of care.

Their solution: Provide a great deal of care.

Ashley X solution: Reduce the amount of care that is necessary, then provide the remaining amount.

I wonder what these people would do in other situations. When their television breaks, would they continue watching the broken screen, or would they fix it?

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