Peter Singer On "The Ashley Treatment"
Singer writes in the Guardian about the parents of a "profoundly intellectually disabled girl born in 1997, known only as Ashley," who used a treatment that involved giving her hormones so she'd remain below normal height and weight, and giving her surgery to remove her uterus and prevent her breasts from developing:
Ashley's mental age was that of a three-month-old. She was unable to walk, talk, hold a toy or change her position in bed. Her parents were not sure she recognised them. There was no prospect of her mental condition ever improving.The treatment was approved by the ethics committee at Seattle children's hospital, where it was carried out. It begun when Ashley was six, and was made public when she was nine. The aim of the surgery was to keep Ashley small and light, so that her parents could continue to move her around frequently and take her with them when going out with their two other children. The uterus removal was intended to spare her the discomfort of menstrual cramps; the surgery to prevent the development of breasts aimed to make her more comfortable when she was lying down or had a strap across her chest in her wheelchair. Nevertheless, when it became public, many objected to it. Some said it was "unnatural", others that it violated Ashley's dignity, that it was not in her best interests, and that it could lead down a slippery slope of parents "modifying" their children for their own convenience.
Today, Ashley is 14. Her mental condition has not changed, but her size and weight have remained that of a nine-year-old. Her father remains convinced that he and his wife made the right decision for Ashley, and that the treatment made her more likely to be comfortable, healthy and happy. He describes her as "completely loved" and her life "as good as we can possibly make it". There seem to be no grounds for holding the opinion that the treatment was not in Ashley's best interests.
As for the claim that it was unnatural, well, in one sense all medical treatment is unnatural; it enables us to live longer, and in better health, than we naturally would. Perhaps the most "natural" thing for Ashley's parents to do with their severely disabled daughter would have been to abandon her to the wolves and vultures, as parents have done with such children for most of human existence. Fortunately, we have evolved beyond such "natural" practices, which are abhorrent to civilised people. The issue of treating Ashley with dignity was never, in my view, a genuine one. Infants are adorable, but not dignified, and the same is true of older and larger human beings who remain at the mental level of an infant. You don't acquire dignity just by being born a member of the species Homo sapiens.
Now, Singer writes, other profoundly disabled children have been given this treatment, and he says their mothers are convinced they are living happier lives because of it.
A disability activist argues against the treatment, but Singer says there's no reason to believe activists know what is better for these children than their parents, who are better able to take care of them with the Ashley treatment.







Ok, someone has to ask it, even though it is horrinly NON-PC. A person who will never exceed the mental level of a 3-monzh-old baby os a huge, lifetime burden. What it wrong with euthanasia in such cases?
a_random_guy at March 16, 2012 6:09 AM
Her parents don't seem to be requesting it, randomguy. Are you suggesting euthanasia against the will of those who love and care for her? I believe in sane adult's ability to chose euthanasia. I believe in the rights of all living things to have adequate pain relief even if it hastens their coming death. I do not believe in killing those we simply don't want to care for, who can't chose it for themselves. That is murder.
I saw nothing wrong with this when it first hit the news, and nothing now. Keeping the body closer to the level of the mind makes life easier on all. She likes to be held and rocked. How would one carry and rock a grown woman? Why risk a pregnancy (due to rape, of course) someday if she outlives her parents ability to care for her and has to enter a care home.
momof4 at March 16, 2012 6:21 AM
From what I understand, generally proponents of euthanasia believe that it should be consented to by the person dying, and that it should be in order to relieve pain.
Obviously, a person with the mental capability of a three year old cannot consent, and it sounds like she isn't in any pain, and that her parents prefer keeping her alive.
ON the other hand, by having her uterus removed, I'd assume she'd go into early menopause, and her life span would be significantly shortened. Would someone who has medical training (beyond basic first responder courses, I have none) be able to clarify whether that would be the case?
Jazzhands at March 16, 2012 6:29 AM
*three month old, sorry.
Jazzhands at March 16, 2012 6:31 AM
My understanding is that without hormone therapy that would be correct, Jazzhands. That may not be the case, though, for someone who never entered puberty. Much like pain relief that might kill you a little quicker, I think her probably not outliving her parents is a good side effect of the surgery.
momof4 at March 16, 2012 6:36 AM
Amy Alkon
https://www.advicegoddess.com/archives/2012/03/peter-singer-on.html#comment-3075631">comment from momof4I think her probably not outliving her parents is a good side effect of the surgery.
Agree.
My friend Sergeant Heather has an autistic son; he happens to be an autistic savant, and I predict wonderful things for him if he just has support, and it seems he will. Heather and her husband realize that their son will outlive him, so they created a family culture where the other three kids see it as a normal part of their lives to look after him. It's an amazing thing -- the handsome, now 19-year-old son, at the kid's birthday party a few years ago, told him he was taking him to the bathroom. No prompting from the parents. He just decided to do it.
It's my belief that all of these kids have a great deal of compassion due to the way they were raised. I about cried when I saw the older brother taking care of the little one. And he does that all the time. He's very protective of the little one -- but not overprotective. Wisdom at 19 -- an amazing thing these days.
Amy Alkon
at March 16, 2012 6:56 AM
This also protects Ashley against sexual predators--not all, of course--as well as any pregnancy. People who prey on the handicapped often work in facilities or group homes.
KateC at March 16, 2012 7:17 AM
I was playing in the front yard with my daughter a few days ago, when a woman walked by with a stoller. Baby A exclaimed, "Baby!" because the person in the stoller was also nursing on a bottle. When I took a good look, though, the passenger in the stoller was actually a full-grown man. I don't know how I'd deal with that. (There was a second young man/teenager walking with them too, who also had an obvious handicap.) I think I'd do the same thing as Ashley's parents- especially if the child's main comforts in life were things like being held and cuddled. And the first thing that came to mind upon reading this was- as M4 mentioned- the possibility of pregnancy if the parents weren't around to protect the child.
Just yesterday I read something that mentioned parents in the Netherlands can have an infant euthanized if he/she is born profoundly retarded and is expected to have a painful/short/miserable life. Now THAT is an actual ethical dilemma.
ahw at March 16, 2012 7:25 AM
While it may be heartwarming to think merciful things about caring for such people, there are hard decisions looming, because this will be taken out of some people's hands and turned over to "public health care" as administered by strangers, under the "Affordable Health Care Act" and its permutations.
We have made it our business in many ways to see that you do not have to fend for yourself. This is one of them.
What level of technical and medical attention should be committed to such a person?
You might have yelled about OctoMom. In the not-too-distant past, the sort of thing described here would not have been possible, and if fact it is STILL not possible for the bulk of those afflicted.
We, the public, duck these hard questions and pretend that such cases don't exist. I don't blame anybody for not wanting to look at such a horrible thing, but I do blame them for deliberately disregarding questions like the one a_r_g asked.
If "Ashley" had been aborted, no big deal. Surprise! Here's Ashley now!
Many seem to think medical intervention is omnipotent and free - and not "free" as in "doesn't cost anyone $$", but "free" as in "we have unlimited time to tend to the patients".
I have another really hard question for you.
For whose benefit is this girl being treated, really?
Radwaste at March 16, 2012 8:07 AM
What a shitty choice for the parents. I can't imagine what that would be like. I'm not normally much of a fan of Peter Singer, but he's writing the truth in this case. The parents had a bunch of crap options but you have to play the hand you're dealt.
Friend of a friend had a physically deformed (hole in heart) foetus. She was told it was unlikely to survive long outside the womb, but being of Baptist upbringing she refused an abortion and brought it to term anyway. The baby lived an hour or so. I always felt that was a mercy.
Ltw at March 16, 2012 8:15 AM
Been there but did not do that with my daughter. Thought about it but decided to hope for the best when it came time to place her in at a facility that could provide the 24/7 medical/daily care she needed. (P4- syndrome, life expectancy 1 yr/actual life 21 years, life level at 9 months, multiple health issues)
Only parents should make these important decisions (ideally with the help of a caring doctor) and all others should offer support regardless of decision or butt out (please read below before screaming "we pay for it").
If we as citizens are willing to pay for life sentences for those that harm others then we should provide for those innocents that are much less fortunate.
Bob in Texas at March 16, 2012 8:28 AM
"Just yesterday I read something that mentioned parents in the Netherlands can have an infant euthanized if he/she is born profoundly retarded and is expected to have a painful/short/miserable life. Now THAT is an actual ethical dilemma."
Yet it has to be done. Even when the soft-hearted wish instead of look at the problem.
Radwaste at March 16, 2012 8:31 AM
Only parents should make these important decisions (ideally with the help of a caring doctor) and all others should offer support regardless of decision or butt out (please read below before screaming "we pay for it").
If we as citizens are willing to pay for life sentences for those that harm others then we should provide for those innocents that are much less fortunate."
False dilemma.
Removing a criminal predator benefits society in obvious and measurable ways, continuously - and, ironically, in some obvious cases this would be best served with one application of a .22 Long Rifle round. "We" must see a benefit to supporting the terminally ill (which in fact is the class of handicapped person at the point of this thread, they will be ill as long as they live, and we do support that now to some extent) and in fact the decision is going to be taken from you by the Affordable Health Care Act, which directs resources.
How much public money should you, personally, be allowed to command? How much hospital time and resources should you and others in exactly your position be allowed to take from others in your cause?
Medical care is not unlimited, and that prohibits it from ever becoming a "right".
How long can it go on, that people are allowed to pretend that "Shit happens" is NOT Rule #1, and that Rule #2 is that Rule #1 is always in effect, deal with it?
Radwaste at March 16, 2012 8:47 AM
This is the first time ever that I have to agree with Peter Singer. By keeping their daughter small, the parents can continue to love her and care for instead of being forced to institutionalize her if she got too big because they did not have the physical strength.
Every family has a right to make their own decisions when it comes to caring for their children - euthanasia should not be one of those decisions, though. It's a completely different situation.
Beth Donovan at March 16, 2012 8:57 AM
Remember, the Affordable Health Care Act is about rationing health care. That's how they'll limit the costs. Oh, and now the CBO is estimating that AHCA will cost double their initial estimates.
Someone like Ashely will be given pain pills, and that's about it.
I R A Darth Aggie at March 16, 2012 9:11 AM
Rad and ARG, you can tell a lot about a society by the way it treats the most vulnerable in it. There have been a lot of places through time where killing off the "undesirables" was practiced. I doubt you'd want to live in any of them. Yes, money and resources are not infinite, but that doesn't mean you get to kill people you deem aren't worthy. You can say the family has to pay or have insurance that does so, which it sounds like they do.
momof4 at March 16, 2012 9:15 AM
I'd much rather live in a country that spends a little more on the most helpless than a country that gives the state the right to decide which people are too useless to live. I don't know about the laws in the Netherlands, but I'm assuming the decision to have a child euthanized is made by the parents, and that the state can't decide to off people's children as it sees fit.
This is a matter for her parents, doctors and insurers. The article doesn't say one way or the other, but this girl doesn't seem to require extensive medical intervention to keep her alive. A hysterectomy and hormone treatments are normal treatments a person might get over the course of a lifetime.
My nephew was born very premature and had an aneurysm as a newborn. He was expected to live three days and is now 27 years old, with the mental capacity of a 9-month-old. It's a very hard life, and I'm not sure he's better off alive, but over 27 years he has needed only minimal medical intervention to keep him alive, so it's a moral dilemma I'm happy to leave to his parents and doctors. It would probably be easier for them to take care of him if he weren't so heavy and as strong as a 27-year-old on one side of his body.
MonicaP at March 16, 2012 9:46 AM
No, I don't claim the right to kill off people I think are unworthy. I absolutely agree that this is a decision for the parents.
The reason for my suggestion of euthanasia is simple: this option is not currently on the table, and it ought to be in cases like this. Just as it ought to be for severely brain-damaaged patients who can just barely manage to breathe on their own. Just as it ought to be for fully cognizant patients in severe pain.
We treat our animals humanely, by putting them down when life just makes no more sense. We should be allowed to treat people humanely as well.
a_random_guy at March 16, 2012 10:17 AM
I feel deeply sorry for anyone whose first impulse in reading this story is that Ashley is a burden to society and why should we pay for her care. How hard and black your hearts must be. My first impulse is to find out the parent's address so I can send them a check. I have no idea how to explain the concept of compassion to a person who doesn't have it.
This illustrates why I am still uncomfortable with euthanasia. It starts out with talk of mercy and relieving suffering, which all makes very good sense. But go a little deeper and it's all about burden to society, and "why should I have to pay for blah blah blah."
KarenW at March 16, 2012 10:23 AM
The reason for my suggestion of euthanasia is simple: this option is not currently on the table, and it ought to be in cases like this.
You might have a good case for a different family, but not for this one. I don't know what options were presented to this child's family when she was a baby, but they seem to want her alive now.
Making the decision to euthanize someone else is very dangerous territory. It's not the same as simply allowing the natural disease process to do its job. Inevitably, we are going to get people wanting to kill their children for very ugly reasons that they will be able to justify, I'm sure.
MonicaP at March 16, 2012 10:27 AM
> There have been a lot of places through time
> where killing off the "undesirables" was
> practiced. I doubt you'd want to live in any
> of them.
M4, I got some bad news: ">We're in one now.
Monster births (etc.) are a natural-world problem, one as old as life. If upsets you too much, never have kids.
Crid [CridComment at gmail] at March 16, 2012 11:00 AM
Dayum, I bungled the link:
http://bradhicks.livejournal.com/328184.html
Recommended reading for one and all.
This is a dark planet, OK? Know that.
Crid [CridComment at gmail] at March 16, 2012 11:25 AM
Did you know that Hitler's Germany studied California's eugenics policies and practices as a model for their own program? And that 1932 wasn't really all that long ago?
http://en.wikipedia.org/wiki/Eugenics_in_the_United_States
Steve Daniels at March 16, 2012 1:26 PM
Only parents should make these important decisions (ideally with the help of a caring doctor)
Then only parents should pay for it
and all others should offer support regardless of decision or butt out (please read below before screaming "we pay for it").
So you just want us to give you money and say nothing?
If we as citizens are willing to pay for life sentences for those that harm others then we should provide for those innocents that are much less fortunate.
Bullshit, keeping criminals out of society has immedate and ong term benifits, what benifit does keeping alive someone with the brain capacity of an infant for 45yrs have?
lujlp at March 16, 2012 1:51 PM
I feel deeply sorry for anyone whose first impulse in reading this story is that Ashley is a burden to society and why should we pay for her care. How hard and black your hearts must be. My first impulse is to find out the parent's address so I can send them a check. I have no idea how to explain the concept of compassion to a person who doesn't have it.
Why? pargmatisits are who keep society running, if we wasted all our resorces on every project that comes down the pike there wouldnt be enough money on the planet for you to be able to feed your kids. And we have compassion, we just dont let it over ride our good sense
lujlp at March 16, 2012 1:53 PM
Making the decision to euthaniz
Yes it is dangerous territory, but lets take this example, three month olds cant feed themselves, the have littel to no bowle or bladder control. If her parents died to morrow letting this girl die 'naturally' would mean starvation
lujlp at March 16, 2012 1:54 PM
Making the decision to euthanize someone else is very dangerous territory. It's not the same as simply allowing the natural disease process to do its job. Inevitably, we are going to get people wanting to kill their children for very ugly reasons that they will be able to justify, I'm sure.
Posted by: MonicaP
Yes it is dangerous territory, but lets take this example, three month olds cant feed themselves, the have littel to no bowle or bladder control. If her parents died to morrow letting this girl die 'naturally' would mean starvation
lujlp at March 16, 2012 1:56 PM
Nice link, Mr. Daniels.
Crid [CridComment at gmail] at March 16, 2012 2:28 PM
Seattelite here.
That surgery was done by a mentally unbalanced surgeon who committed suicide shortly afterwards.
Nuf said.
deathbysnoosnoo at March 16, 2012 3:13 PM
I would propose that dangerous criminals that refuse to change be removed from society via the .22LR method instead of providing housing, security guards, food, and free medical (at the same institutions we go to).
The money spent on the above would be available for the State (in our case) institution that took in the kids like my daughter.
Since there is no public debate about how we spend "public" money there is no false dilemma. Both situations are lose lose economically for society. (Is it more expensive to bury a few people or to house and take care of a killer for 30+ years? Would it be cheaper to wait for "death by cop"?)
The issue was described perfectly - the child is chronically ill with no hope whatsoever of anything changing until death by some related medical side affect.
There are no good options except to muddle through as best one can. Insurance takes a hit and then the State budget takes a hit.
The camel's nose is in the tent. For example, if women's care requires "free" '(fill in the blank), then obviously this must start at puberty regardless of parental opinion. After all, a person's well-being is at stake.
By not insisting on accountability, by not having the honesty to have the discussion we are having today, we have sidestepped our way into total government control.
Bob in Texas at March 16, 2012 4:23 PM
Yes it is dangerous territory, but lets take this example, three month olds cant feed themselves, the have littel to no bowle or bladder control. If her parents died to morrow letting this girl die 'naturally' would mean starvation
I suggest people consider the matter carefully only because it can get very ugly very fast. I'm actually in strong support of euthanasia in general, but it's not always the right choice. For example, killing someone off simply because they can't feed themselves is not the standard I want to see.
I don't think letting actual 3-month-old children die of starvation because parents don't want to feed them is the way to go. And I know that's not what you mean. But we need to think about long and hard about the standards we set for what constitutes a meaningful life.
MonicaP at March 16, 2012 4:31 PM
When you look at Stephen Hawking -- he is a valuable member of the world's society. Then you look at the Terri Schiavo case. I don't want to be her.
I've been working on cleaning that up.
I did the Fallout Shelter Scenario years ago. When you add in the number 3 question -- the answers get muddied to a point.
But that also helps you solidify your core principles.
Jim P. at March 16, 2012 8:52 PM
It used to be part of a traditional midwife's job to make this decision for the parents. She might take a deformed baby in the next room and come back with it pronounced "stillborn".
jefe at March 17, 2012 9:30 AM
I think it is pretty crappy to criticize Ashley's family's bad choices when there was no good choice to be made. Sometimes life is shitty and you have to travel the least bad path when there is no good one in sight.
LauraGr at March 17, 2012 10:39 AM
"By keeping their daughter small, the parents can continue to love her and care for instead of being forced to institutionalize her if she got too big because they did not have the physical strength."
Alert!
What was the means to determine that this was the right path to take, and is it being applied elsewhere?
-----
"Since there is no public debate about how we spend "public" money there is no false dilemma."
Error in fact + Appeal to (inverse) popularity = fallacious. Start over.
Radwaste at March 18, 2012 2:46 PM
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