I heard about this today on BBC:
In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little “pillow angel” a manageable and more portable size. The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.
The case has captured attention nationwide and abroad via the Internet, with some decrying the parents’ actions as perverse and akin to eugenics. Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home..
I’m really shocked by this case. I don’t want to be overly critical of parents raising severly disabled kids because I do think there is no good support system in place for them, but I’m shocked that doctors and a medical ethics board were willing to go along with this.
One of the things that really caught my attention was the quotes about breast removal from the blog that the parents have created to explain the surgery:
Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her. This is especially true since Ashley is likely destined to have large breasts, given her maternal and paternal female lineage; for example, an aunt had a breast reduction operation at age 19. Large breasts are uncomfortable lying down with a bra and even less comfortable without a bra. Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts.
And then soon after there is this quote:
Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.
I am at a loss for words :-O :-O
I definitely think this is a feminist issue and a disability rights issue. The the desexualization of the disabled combined with the extremely gendered nature of this treatment just astonishes me. To me feminist reproductive rights advocates should be lining up to challenge this treatment (But if I was a betting women, I’d bet most of them won’t say much.).
I went over to Blue’s site to see if she has responded. She said she will put up a comment soon.
What do you think?
So, again, how EXACTLY did removing the healthy uterus and breast tissue from a six year old girl benefit her at that time, at that moment, in her then-current circumstances (and not the imagined “pain” and “risks” she might or might not later face).
because even though one cannot be EXACT about it, there is value to the future. >>
Just like slamming my breasts in a drawer to get a mammogram has value, even though technically it was a waste of my time, energy and money if I don’t wind up getting breast cancer. Reducing future risk has value even if the risk never materializes. If you believed otherwise, you’d never go to a doctor for a physical, get a pap smear, mammogram, stress test, etc. — you’d just wait until the bad thing happened and then deal with it.
Suzanne wrote:
“I have a friend who had a hysterectomy and her breast tissue removed after she was through with childbearing because her family is just lousy with uterine and breast cancer. I don’t personally know what choice I’d make, but I can easily see why she’d make that determination. Why can’t you? The possibility of preventing something bad is absolutely something that can be factored into decision-making. You don’t have to wait until the something-bad occurs.”
-And you know what Suzanne, that’s fine. Your friend has the right to remove her own organs. But did your friend also remove her young daughter’s healthy organs on the off-chance that her daughter may develop the uterine and breast cancer her family is pre-disposed to? I doubt it and if she had, you’d probably think she cruel for having done so. Yet that’s EXACTLY what Ashley’s parents did and you think that’s A-Okay.
“Is your issue with the hysterectomy the fact that’s it’s *invasive surgery, Jane?”
-Definitely NOT. That was in response to the comment about me treating an abortion with the same levity I would someone having “tubes” put into their ears. The reality is that an abortion (a D&C) is a very minor procedure – outpatient, in fact.
Sailorman wrote:
“Obviously nobody wants to get cancer (HPV vaccine, anyone?). reducing the chance of future cancer has value. Sure, you may make a good argument that the value gained is LESS than the cost–I never said I thought this was clear cut–but are you seriously claiming there is no value to reducing future risk? And if so–are you against vaccinations? Against anti-smoking campaigns?”
– A vaccination to ward off potential cancer does not come at the price of removing an organ. Enough said!
Kimberly wrote:
“sailorman, I’m guessing Jane bought a car without air bags because she didn’t need them at that moment. She’ll wait until she has an accident to buy them.”
– Your logic is pathetic! If installing the airbag in your car came at the price of your child’s organ, then I suppose you would have given up your kid’s organ. I mean, so what, she doesn’t know any better, right? (yeah, full throttle sarcasm here – hurl absurdity my way and I’ll respond in kind!)
“I know how doctors make horrible life altering mistakes.”
– No Kimberly, you don’t sound like you know that one single bit. In fact, given your own personal circumstances, it’s even more disturbing that you wouldn’t exhibit even the slightest bit of skepticism about the motivations of the small group of doctors and the parents of Ashley to do what they did. Or is it that doctors are only capable of acting improperly towards you?
Kimberly wrote:
“I’m guessing Jane bought a car without air bags because she didn’t need them at that moment. She’ll wait until she has an accident to buy them.”
-Back to this comment Kimberly. Just out of curiosity, have you removed all of the organs of your children that may one day present with malignancy? ‘Cause you don’t want to wait until they have cancer to do it, right?
-If not, it would be useful to use all to turn down the ridiculousness a notch, or two.
Sarah and MrSoul:
Let me begin by apologizing first and foremost for the ignorance, insensitivity, rudeness and flagrant hubris of others.
More troubling still, is that sometimes the parents of just these children are the worst violators, the most ignorant, the least protective and the most forgiving of body-altering for the sake of convenience.
Fundamentally, the reason it’s all quite acceptable comes back as one thing: Ashley won’t ever know. And they’re right, she won’t. But we do; isn’t that enough? People do all sorts of awful things to others because they won’t ever know – still doesn’t make it right.
We live in the wealthiest nation on the planet, with plentiful opportunity to education and awareness. And yet, some people are simply not capable of bending their mind around the concept of “human rights” and “dignity.” I mean, they don’t even understand the concept, never mind embrace it. That’s just mind-blowing!
They think extending it to someone is contingent upon the recipient’s level of ability in some perverted point structure where a “normal” human scores the highest and someone like Ashley….well, she falls somewhere under a tapeworm I suppose.
How can we tell them, Listen, removing a blind man’s eyes isn’t okay just because he’s blind or because he’s also in PVS. And removing healthy organs from another human being isn’t okay just because they don’t know it or need them.
It’s just as wrong to remove healthy organs from a mentally deficient girl as it is from a mentally intact girl. Neither is less entitled to her organs. And though they may have been born with different levels of ability, they were born with the same level of rights. Applying human rights means that whatever case is made for removing healthy organs – it has to apply to either girl, or neither girl.
And that’s as simple as I can put it – and as basic as it gets.
I thank you both for the time and energy you’ve expended to make a dent at educating others for the sake of your own lives and that of others. I hope it yields you far better results in other arenas than it has here.
>>It’s just as wrong to remove healthy organs from a mentally deficient girl as it is from a mentally intact girl. Neither is less entitled to her organs. And though they may have been born with different levels of ability, they were born with the same level of rights. Applying human rights means that whatever case is made for removing healthy organs – it has to apply to either girl, or neither girl.>>
I’m not sure that I can agree with your last sentence. That implies that all medical decisions have to be made using the same level of risk assumptions on all people, regardless of circumstances.
Consider this: If my teenager develops cancer, it would be inhumane to just let her suffer and not get the appropriate chemotherapy, radiation, whatever treatment is appropriate. If my (hypothetical) elderly grandfather with Alzheimer’s, paralysis, liver disease, kidney disease, and a stroke, who has previously expressed a desire not to live under these circumstances, develops cancer, is it inhumane for me not to go as gung-ho on his care just to extend / prolong a life he doesn’t want as I would for my daughter? How about treatment for pneumonia — what they used to call “the old man’s best friend.” These are difficult decisions, to be sure. And they’re not entirely applicable to Ashley’s case, to be sure. But my point is — you have to take each case individually. You can’t just say all hysterectomies or all this or all that get applied with the same weighting factors to each case.
Okay Jane I see what your saying…. it’s all clear now.
Ashley’s parents
1) Shot her up with estrogen to keep her short so they could play catch with her .
2) They removed her uterus so they didn’t have to change a bloody diaper and cause what the heck, lets see what happens.
3) They wanted her brest buds removed cause hey, boobs can really weigh you down ya know.
4) They thought it would be exciting to add in the appendix so the opperation had one more complication and prolonged the anestitia.
Is this your point ? Could you please explain to me why, you feel they did these things. Why in your mind did they allow this stuff to be done.
I tryed to just express my one feeling and have been brushed off as a parent against children’s rights. When really all I am asking is if you truely think Ashley’s parents did all this out of hate, anger, bordom, what ?!?
Yes this has gotten my slightly frustrated, and sarcasm is my outlet.
Fathers that shoot there babies with BB guns
Fathers who decapitate their infants
Mothers who microwave their infants
Or put crack in there bottles
How about woman who drown their children.
These are the parents I can tollerate hearing people bash and degrate.
But in my honest oppinion Ashley’s parents are only doing what they feel is what makes Ashley’s life better. It’s out of love.
“You can’t just say all hysterectomies or all this or all that get applied with the same weighting factors to each case.”
– Well, I haven’t said that – but you have a tougher time comprehending what I have said than you have of the human rights issue, which is a big statement as you seem to grasp none of the latter. Regarding the “weighting factors,” you’ve been very very clear that removing healthy organs for the sake of proposed future benefit of an individual is acceptable with the “weighting factor” differential being mental ability, or lack thereof. Okay, I hear ya, loud and clear: All other factors being equal, it’s not ethical to disembowel a normal person but perfectly fine if they’re mentally deficient.
“Consider this: If my teenager develops cancer, it would be inhumane to just let her suffer and not get the appropriate chemotherapy, radiation, whatever treatment is appropriate. ”
-Are you dense, or is this a convenient ploy? Really, I have to believe it’s the former ’cause you CLEARLY have trouble understanding what a HEALTHY organ is vs. treating a child with DISEASE! Under the umbrella of saving a child’s life – whether by removing a malignant organ or treating cancer, any and all methods are deemed appropriate (for EVERYONE, regardless of mental ability). But you know what? I’ve answered that ad nauseam, ad infinitum. Know what else? You just ignore it and repost the same tired senseless scenario. And, frankly, it’s just stupid and illustrates gross ignorance and a frightening lack of comprehension.
As for the rest of your hypotheses, they’ve been previously addressed, are strawmen and predictably absurd, at best (and sweet Jesus am I being kind).
Listen Suzanne, you don’t get it and you never will. You are who you are and trying to describe what a human rights violation is or what qualifies as an affront to someone’s dignity is as confounding to you as Sanskrit. All you do is repeat the same rhetoric – she’s a mental 3 month old, she doesn’t know her healthy organs were removed, she doesn’t know they shrunk her, yada, yada, yada.
You see the circumstances and a quick fix.
I see the person and their inherent dignity and how unworthy we are as a society to chop them into more manageable pieces or come up with a list of potential benefits to removing their organs (reasons that would never justify removing them from a “normal” person – i.e., “more worthy”)
We are two continents an ocean apart; a gap neither of us can bridge.
I’ll stay where society acknowledges that human rights are not based on IQ. That the “weighting factor” used for elective procedures doesn’t distinguish between the handicapped and the intact. Maybe that means we live with adults who have breasts and menstrual cycles but babble like infants. That’s okay, I can live with that – quite happily I might add. Least I don’t have to wonder when the 15-25 age range of static encephalopathy suffers goes in for their organ removals or when the stroke victims get their lets hacked off so they’re easier to turn and avoid bedsores.
And you? Well, you can stay on your land, rounding up the handicapped – the ones on the lower end of your “weighting factor” scale for their round of shock therapy, lobotomies, re-sizing and organ removal. Heck, they don’t know the difference and you’re pretty sure it just makes them just plain happier! (ever read Mein Kampf….your people could use it as their constitution)
“Could you please explain to me why, you feel they did these things. Why in your mind did they allow this stuff to be done.”
-Kimberly, I’m sure you’ve read their blog and skipped over the endless references that didn’t seem to be about Ashley so much because you extended them – total and complete strangers – the benefit of the doubt, repeatedly. I, on the other hand, couldn’t help but notice how clear the intent was.
Ashley’s parents did all they did for CONVENIENCE.
It’s really not very complicated at all. (yeah, there are a couple of other underlying issues but that’s the resounding factor)
Jane, I’m going to give you the benefit of the doubt and assume you haven’t read the moderation goals for this blog. Please alter your posting style immediately to incorporate civility and respect for others, even those you disagree with. Thank you.
Some of you people scare the hell out of me. Is it just because I’m Australian? Jane, I’ll buy you a ticket – come down under to sane-land.
Its pretty obvious that most of our opinions are formed, and at least people care enough to discuss this as an issue, even if they are misinformed (in my opinion).
I won’t change my mind about this issue. It is morally repugnant and completely abhorrent to me that this ‘treatment’ was even considered, let alone carried out. It is also incredibly sad that it is validated by so many ill-informed or misguided individuals. I do understand Kimberley’s frustration, but agree with Jane – it is more an indictment on the sad state of disability services available (apparently in your country as well as mine).
lj, it was a sad attempt at black humour. (Ashley’s parents ‘chopped their child up’…)
Suzanne, with all respect, you are an utter meathead.
Myca, are you related to Suzanne?
Voices of reason from Kate L, Susan, bean and almost Will…you can catch the same flight.
Whilst I was off away from the ‘puter, I was working in my job, which, like Will, is with people with disabilities. I spoke about this issue with a delightful young lady who has spinal muscular atrophy. She does not have any level of intellectual impairment. Her name is Kelly.
Kelly was not aware of this entire issue. I asked her opinion (very carefully not telling her mine) and she was outraged. I asked her why she was so angry.
“Because,” she said, “you are not just talking about this girl Ashley. You are talking about me. If I had no intellect, that could happen to me. I wouldnt have a say. I *couldnt* say anything even if I wanted to. And it doesnt matter whether it will be better for her, or who thinks what – people just can’t ‘do things’ to disabled people. Thats what used to happen, when people were put in homes and given frontal lobotomies.”
In the fifties in this country, well intentioned people decided to remove Aboriginal children from their families and put them in homes across the city districts. I believe the same thing happened in Canada. We have all sorts of social issues with our indigenous people, and there is much reference to ‘the stolen generation’. Noone can argue that the people of the time did not think they were doing the right thing. They made decisions based on the information they had available to them, and on the values that they held at that time.
Noone can argue that Ashley’s parents do not love her.
But Kelly is absolutely, dead set 100 percent right. This is a human rights issue, and it has deep repercussions for all people with disability. I am speaking as a person who has a disability, the mother of two children with a disability, and as a disability practitioner. Of course I feel for the parents. I feel for Kimberley. It is a horrible situation. But we cannot just ‘do things to disabled people’ because we ‘think’ that they will be uncomfortable, or messy, or less portable. It is wrong. People with disability are people, and they have rights. The discussion about Ashley’s intellect is irrelevant – she is a person in her own right, with emotional intelligence, and the same rights so-called ‘normal’ people have.
Well, thats my five cents worth. Will was absolutely right in one regard – go and volunteer at your learning support (is it still ‘special ed’ over there?) unit or school. Impassioned debate aint going to help Ashley.
Heres a warm and fuzzy to throw at you all – a link to Kelly’s brother, Bill, when he won our College award last year. James Dawson was my boss, and died last year. I inherited his position as Disabilities Manager, and created this Award for people with disabilities. Bill has just turned eighteen and is one of the most inspirational people I know – it is people like he and Kelly who inspire me daily and make me impassioned about human rights. Click the image to view.
http://www.intersector.wa.gov.au/article_view.php?article_id=669&article_main=
At least the impassioned discussion shows that we care – even if we do have different opinions. Now go and do something. If you care about Ashley being mutilated, lobby your local MP so that it never, ever happens again. If you care about the angst that her parents have been through and are okay with the so-called ‘treatment’ – well, good on you. Now put your social conscience where your mouth is and go and volunteer at a hospital, school or respite centre. Offer Kimberley some help. Do something. Otherwise…its just fubar.
PS Jane, I like you. Thank you for being the voice of reason.
Sam I appreciate your posts but I have one quick question for you all.
This came to me lastnight while watching my daughter’s home health aid.
You see as of September I person comes to my house everyday for two hours to
help with my daughter’s personal care. (Bathing mostly, diaper care, cloths changes, etc…)
Anyway it came to me, how dignified is this. How would I
Sorry, hit the wrong button.
Anyway, how would I feel if strangers were coming to my home to bath me because I could not. I’m not sure about everyone here (who can do these things themselves) but I would prefer my family to help me. I would be embarassed to have others wipe my private areas. Just a thought.
“Jane, I’m going to give you the benefit of the doubt and assume you haven’t read the moderation goals for this blog. Please alter your posting style immediately to incorporate civility and respect for others, even those you disagree with. Thank you.”
Ampersand, because they support your bias you’ve, not surprisingly, taken no exception to the patently rude and accusatory comments directed towards me.
If you feel the need to call “order,” I’ll thank you to observe consistency.
Ashley’s parents did all they did for CONVENIENCE.
The word convenience is frequently being used against the parents, as if to say they’re motivated by the sin of laziness. I don’t necessarily agree with all of their actions, but in the matter of 24/7 care that will last longer than their remaining lifetime, convenience is a subject of unusually high gravity.
We only have so much time, money and energy to give, and Ashley’s siblings need their attention too. And their careers need their attention. And they need each other’s attention. If a lighter frame saves, say, $5 a day in medical expenses, requires physiotherapy twice a month intstead of once a week, one less doctor’s exam per year, one less bedsore in a week, one less medical complication in a lifetime, one less stranger handling her, or allows them to simply spend ten more minutes each day just relaxing, or reading, or playing or sleeping, these could be priceless gains.
Okay, first a quick mea culpa.
My understanding of the process by which Ashley’s height was limited was faulty. The removal of her uterus wasn’t part of that, and I was wrong for thinking it was.
I still believe that the removal of her uterus wasn’t a wildly out of line thing to do. I think of it as vaguely equivalent to the removal of her appendix, because, like her appendix, it brought her no benefit (at all), and had the potential to bring her ongoing negative consequences.
To go back to my original comparison, if I knew that my testicles would bring me pain each month . . . possibly serious pain, possibly mild pain, but in any case, pain that I’m unable to express or communicate except in the most rudimentary forms . . . and I also knew that they would bring me no benefit (I’d never have sex, I’d never reproduce, etc. . .) I’d have them removed in a quick minute. The same basic logic applies to her breasts, as far as I’m concerned.
Jane, I’ve felt that the continual reference to these procedures being for the convenience of Ashley’s parents (and concomitant refusal to address seriously the concept that the procedure may have been for Ashley’s quality of life) and linking of removal of these organs with the removal of the healthy organs of an unimpared child are both strawmen and distortions of your opponent’s opinions.
Asking us to defend ‘why this is okay for the convenience of Ashley’s parents” is asking us to defend a position none of us have taken. Claiming that there’s no difference between these procedures and the removal of the healthy organs of an unimpared child is claiming that your opponents support positions that they do not.
I apologize for not stating this more clearly earlier, but I think that Mandolin was able to take my meaning clearly.
—Myca
CJ wrote:
“We only have so much time, money and energy to give, and Ashley’s siblings need their attention too. ”
CJ, I think that’s an interesting quote – particularly since I touched on the subject earlier. You’re right – “time, money and energy to give” aren’t limitless and they’re all things that dwindle significantly the more children one has. So, who paid the ultimate price for less time, less money and less energy to give? Ashley, that’s who.
Jane wrote:
From the moderation goals (which I hope you’ve read by now):
Jane, I’ve had the flu for ages and it’s not going away, and my basement was flooded and my insurance refuses to pay for it and I’m dealing with contractors every day. In these circumstances, I find that I have very little energy or interest in closely reading “Alas,” so I haven’t been reading most comments. I was skimming comments and the phrase “Mein Kampf” jumped out at me — because it’s so far above and beyond the usual level of flamage.
Did anyone else make the “Mein Kampf” comparison, or something else equally extreme and over-the-top? If so, tell me the comment number and I’ll tell them off too. But in the meanwhile, please start paying attention to the moderation goals, and remember that “but they did it too” is not an excuse.
Kimberly:
This is one of the things that ablebodied people often focus on — I would say it’s even a cliche — but that disabled people (at least, in the writings I’ve read) report time and again is actually not a big deal. Dignity comes from being treated respectfully, not from wiping one’s own butt.
Jane,
Are you capable of viewing the other side of this at all? i’m honestly curious.
because hell, for those who support the decision–like me–it seems nonetheless troubling. It’s a hard decision to have made. i wouldn’t fault them for deciding differently. Hell, if I had to make that exact same decision, I’d be troubled for months before coming to a conclusion.
but what I don’t get is that you seem to be suggesting there was essentially no decision to be made. What I get reading your posts is that you think this was cut and dried from the get-go. You seem to think the answer should have been “no” even without debate; that it should have been clear enough to be decided over a cup of coffee.
Now, is that true?
here’s why i’m asking:
If you DO think it’s so obvious that the “other side” (people who disagree with you) are essentially insane… well, there’s not much point in arguing with you, is there? We may as well stand on boxes and pelt each other with rocks.
And if you’re not going to give any credence to other’s views, or acknowledge that in this type of scenario there isn’t some “objective right” and “objective wrong” which you can magically summon up in support… well, if you’re not going to respect anyone else’s views or think about them “for real” then even if we’re not arguing, why bother talking with you at all?
There’s only so long that people will be willing to engage in pleasant logic with someone who appears irrevocably committed to a point of view. It’s about as much fun, and about as pointless, as arguing abortion with a fundie.
Jane, having another child doesn’t simply diminish the resources available for Ashley. In the short term there is a diminishment, but she also gains a sibling to play with. Also, a healthy child will become independent in their late teens. Then they will able to assist their parents with Ashley, and take over Ashley’s care when her parents become too old. If they can manage another child now, while they’re young and strong, it could be of great benefit both to them and to Ashley later.
Sailorman, discussions about abortion and surgical alteration of the disabled are not meant to be entertaining. In matters of doubtful and irreversible acts, you can either allow the actions to proceed and gain legitimacy while we endlessly ponder the subjectivity of right and wrong, or you can take a stand and say ‘No. Convince me, then I’ll step aside.’
I don’t think that that’s illegitimate, but I think that Sailorman’s point is that this is becoming like arguing abortion with someone who won’t admit to the mother having any rights to protect, who won’t admit to any tradeoffs, and who won’t even acknowledge that the point of view of the other side is not crazy at all.
I mean, I’m solidly pro-choice, but I can totally understand why some folks are not. I think that they’re wrong, but I can see how they get to where they are.
—Myca
Ampersand,
I get it. You extract your perception of something inflammatory (Mein Kampf) and then decide to use that as the bar of what’s “over-the-top?” And, “coincidentally,” it just happens to come from someone opposed to your opinion. Terribly convenient, isn’t it.
#195 – Myca begins by calling me “grating.” (YOU hurl the first personal attack)
#219 – Suzanne sarcastically calls me a “real piece of work.” (personal mockery)
#224 & #230 – Myca accuses me of “demonizing” those who disagree with me as “monsters.” (inflammatory accusation and mischaracterization)
#228 – Myca accuses me of attributing “malice” to those who disagree with me. (inflammatory accusation and mischaracterization)
#243 – Myca says “congratulations, guys, you’re hella compassionate.” (rude and sarcastic)
#245 – Myca says opposers “don’t want Ashley’s parents to hold her” and “would prefer for her not to feel joy.” (talk about being inflammatory and over-the-top)
And that was captured by a simple cursory glance. I’m sorry you didn’t feel the incentive to, at least, establish what drew my comment.
Assuming you’re one of the moderators I would think – at least for the sake of substantiation that you’re truly interested in maintaining fairness and composure – that you’d take the time to point out the maligned comments made by posters on both sides of the debate, and not simply police the ones who don’t share your views.
Otherwise you allow like-minded posters to build the fire, fan the flame but act ONLY when a dissenter responds in kind.
(PS: The fundamental human rights violations that are perpetrated against the mentally disabled is not at all unlike the principals that fueled the years leading to the human atrocity of the Holocaust. Mein Kampf is actually a very useful piece of literature to understand how one gets from A to B – almost unnoticeably)
I understand that my daughter doesn’t realize she’s nude in front of a stranger. She doesn’t have that intelect. However it’s the same for Ashley and her uterus. She doesn’t have the intelect to know it’s gone therefor her parents felt the benefit was worth Ashley’s loss. Meaning Ashley had more to gain by having the uterus removed and not suffering any emotional “I’m naot a woman without my uterus” feelings.
No question, I lost my cool in posts #243 and #245, and I apologize for that. I believed then, and still believe now, that you were setting up strawmen to oppose, and I found that very frustrating.
I stand by what i said elsewhere.
If I understand your last post, Jane, your position is more or less that it was wrong of me to accuse you of of demonizing those who disagree with you, or attributing malice to them . . . but they’re all like Nazis and Mein Kampf is a perfectly reasonable analogy.
Is that right?
Sailorman wrote:
“It’s a hard decision to have made……. Hell, if I had to make that exact same decision, I’d be troubled for months before coming to a conclusion.”
– I’m glad you said this Sailorman because it may shock you to learn that Ashley’s parents have actually corrected the public’s misconception that this was a “difficult” decision. They said it was not a difficult decision at all.
Even the most vocal supporters of the Ashley Treatment insist this would be a very long-though and difficult decision to come to.
CJ wrote:
“In the short term there is a diminishment, but she also gains a sibling to play with. Also, a healthy child will become independent in their late teens. Then they will able to assist their parents with Ashley, and take over Ashley’s care when her parents become too old.”
Oh CJ, honestly, do you think Ashley “plays?” By everyone’s account, she doesn’t and she never will. And do you believe it’s fair to saddle two children – before they even enter this world – with the task of helping mom and dad care for their helpless sister and, later on in their lives, even take her on as a resident in their own homes so then they can continue her care?
As parents, we inherently make the decision to care for our children (in good times and bad). But that seems like a tremendous load of full-time responsibility to assign onto her siblings who never made the decision to take it on.
Sailorman: “And if you’re not going to give any credence to other’s views, or acknowledge that in this type of scenario there isn’t some “objective right” and “objective wrong” which you can magically summon up in support… well, if you’re not going to respect anyone else’s views or think about them “for real” then even if we’re not arguing, why bother talking with you at all?”
Sailorman, the issue for me, and probably for Jane (she can clarify and/or correct me if she chooses), is that you base everything you say on “facts” ascertained by an able-bodied value system. If you announce with white-man Medical Deity expertise and arrogance that a particular child has a mental age of blah blah blah, and then treat her that way, she will be forever stunted–even if she was actually mentally average. Childhood disability is a self-fulfilling prophecy, in many ways. Examples: I was not allowed to go to public school until I was 8 years old and was first required to pass a test “proving my intelligence”. (Note: the test did not “prove my intelligence”, it proved my bookish grandfather had homeschooled me and taught me to read, write, find countries on the globe, etc. What if I hadn’t had that privilege, or an educated white grandfather who taught me the appropriate cultural biases to pass the test?) Thus, the warnings my family got, that I’d be “living at home at home my whole life” seemed entirely accurate, didn’t they? Similarly, I was not allowed to test for a driver’s license until I was 31. (thanks to the ADA, neither of these situations could legally happen now) I could go on. The “experts” announced I was limited, then made sure to limit me. People who have been gimps since birth are very well aware of this pattern, and we don’t trust proclamations by doctors on ANYTHING.
I think you and Jane are starting from different points of reference. It’s like right-wingers who believe the racist okey-doke, that “more minorities are in jail because they commit more crimes.” (quote from Ann Coulter, bestselling author) Well, deconstruct that sentence, what is a “crime”? (Dropping bombs on innocent civilians?) Right out of the box, the terms are suspect and open to disagreement. Likewise, some of us don’t believe the first few sentences offered about Ashley’s life. Before I accept her “mental age” as however-many-months they have decided it is, I would like her evaluated by the same people who evaluated the likes of Stephen Hawking. Then, we can talk. As it is, I will never believe a fucking word they say.
But that’s just me.
And: thanks for your earlier comments, Jane.
Myca,
You are correct in your summatino.
jane,
there’s a reason i used the fundie analogy. I don’t know exactly what the basis is, but you seem to–dare i say it?–treat certain thins as holy.
Because the argument “… but it’s an organ we’re talking about here!” or “because it’s the life of a little girl we’re talking about here!” or arguments about human dignity (at least the way you use them)…
well, they’re intended to be discussion killers. As if, you know, an organ isn’t just REALLY important and valuable, it’s sooooooo important and valuable that even talking about giving up an organ is anathema. And so on.
But hey, that’s not really the way the world IS, ya know? Because the problem is that there are a lot of things which are really, really, important. And because life is difficult, sometimes some unlikely folks are forced to choose between things they’d rather not give up–“Sophie’s choice” style.
So what you seem to be doing here is sort of like ducking the question “which do you choose?”
You may not THINK you’re ducking the question. But you are–since you’re not really even treating it like a question. it’s a bit like you’re saying “because because because”… and your “unanswered questions” are just “because” in question form.
Myca wrote:
“If I understand your last post, Jane, your position is more or less that it was wrong of me to accuse you of of demonizing those who disagree with you, or attributing malice to them . . . but they’re all like Nazis and Mein Kampf is a perfectly reasonable analogy.”
– Which came first Myca? What precipitated what? Whom ignited whom? I do appreciate your words, and thank you.
As for Mein Kampf, if you read what I wrote to Ampersand about it, it might explain that a bit better. There is a real danger in advocating what was done to Ashley – and the Holocaust proves where that danger can easily lead. (this is a path history has already taught us to avoid)
Jane, as I already explained, I don’t have the time right now; flu and my FLOODED HOME are keeping me too busy to spend much time or energy on “Alas.” (Would it have hurt you to say “I’m sorry your home was flooded and you’re sick?”) If you choose to believe I’m lying about that, I can’t help that.
Do you have a blog where there are threads with 200, 300 comments or more on some threads? If you don’t, I think you may be failing to understand how much time and energy the kind of in-depth moderation you’re calling for would take me.
I’m constantly taking criticism from people for allowing too much reign for allowing folks who disagree with my view to post comments here unmoderated. I don’t think that if you were more familiar with “Alas,” you could really believe that I only ever moderate people whose views I disagree with.
Myca, thanks for apologizing (and Jane’s right, you did act badly).
Next person who personally attacks a poster on this thread in a rude way, whatever side you’re on: If I see it, you’ll be at least temporarily banned.
Yes I believe Ashley can ‘play’. My daughter can. Just because a child can’t jump rope or play a video game doesn’t mean they have no need for play.
That’s my point with you. You want to give these children their dignity and rights to grow up naturally as woman but then go on to say they can’t have a meaningful relationship with their siblings. My daughter loves the companie of her siblings and enjoy the ‘games’ thay play with her. Of course these are game they have made while being with her not ones bought on the self at K-mart.
My other children will sing a song that my daughter knows wrong or in a weird way and she gets much joy out of thr ‘goofyness’ how ever when sang correctly she responds completly differen. My children love doing this with her. I didn’t make up this game they did, they wanted to have interaction with their sister.
I also have made arrangements for my daughter’s future , not related to my other children and have been told they are hurt by this. (they are still young and may not intend on taking care of her. I fully respect this and would never make them bear my responsability) But at this point it seems that two of my three children want nothing more that to take care of their sister if anything happens to myself or my husband. (one is actually a ‘step’sister)
Your assumptions are bothersome.
Oh CJ, honestly, do you think Ashley “plays?”
I believe she is conscious of affection, yes.
And do you believe it’s fair to saddle two children – before they even enter this world – with the task of helping mom and dad care for their helpless sister?
Taking care of one another is a central obligation of family. It is why ‘husband or wife’ is different from ‘lover’ and ‘brother’ is different than ‘friend’. The assistance of the former in times of hardship is assumed, the assistance of the latter isn’t.
Sailorman wrote:
“Are you capable of viewing the other side of this at all? i’m honestly curious.”
Sorry, I meant to respond to this earlier but I just forgot. So let me do so.
Yes, I am actually “capable of viewing the other side of this.” I see it very clearly. I have personal, first-hand knowledge of what it’s like to care for a 165 lb. woman who is virtually helpless. And I honestly have no words….there are simply no words in the English language to describe the level of difficulty. In fact, I can tell you that trying to put an adjective on it is almost insulting, because verbal descriptors diminish the complexity of hardships on so many levels.
And, yet, even understanding all of the practicalities resolved in the Ashley Treatment shouldn’t motivate anyone to alter perfectly healthy organs for the sake of ease.
Do I think organs are “holy?” No, absolutely not. Actually, I see organs we can live without as just that – organs we can live without. And if disease comes knocking, by all means, take them out. We are MORE than the sum of our parts. Yes, I believe that.
What I have said very consistently is that applying human rights and dignity to a fellow human being is sanctified. If you’re aghast to remove the healthy organs of Ashley’s younger sister, then you have no case to remove Ashley’s – other than giving yourself that kind of authority just because Ashley is mentally disabled. And that’s a gross violation of someone’s human rights.
And, yet, even understanding all of the practicalities resolved in the Ashley Treatment shouldn’t motivate anyone to alter perfectly healthy organs for the sake of ease.>>
I think it’s because some of us view Ashley’s quality of life as being more sacrosanct than the bodily integrity of her organs.
While I think much of the discussion on this thread has been very productive and has genuinely engaged with the debate, I have been reading the thread all along, and the name calling has got to stop.
I understand the passion people feel, and I think Jane’s argument is well reasoned. I don’t feel that she has been anymore abrasive than some other commenters (i.e.–Myca, who apparently has apologized).
Nevertheless, I support Amp’s decision to ban anybody from this thread who engages in name calling or bullying behavior. Moreover, since I started this thread, I’ll close comments if it spirals out of control and deteriorates into name calling.
(Note to Jane: It is really hard to keep up with the over 200 posts a day on this site, especially given the popularity of this thread and the transgender thread. I was following closely enough to know that you didn’t start the name calling and that your arguments have been above board. I just think people do need to remember that it is easy for Amp or I to overlook comments because we simply can’t pay attention every minute.)
“Taking care of one another is a central obligation of family. It is why ‘husband or wife’ is different from ‘lover’ and ‘brother’ is different than ‘friend’. The assistance of the former in times of hardship is assumed, the assistance of the latter isn’t.”
CJ,
I can only speak to this in a very narrow manner. I believe our children should be born on this planet with NO DEBT whatsoever. I would no sooner expect my child to pay my financial debts when I’m gone than I would expect them to take over the 24/7 care of ANYONE, including their siblings. That’s a tremendous responsibility that can sap decades from their lives, destroy their own marriages and stunt their ability to form their own happy families – free from a massive responsibility laid on them at birth.
Now, if they WANT to assume that care once I’m gone, that’s fine. But I don’t expect them to and I don’t even want them to think it would make mommy feel happier. Their lives are their own to live free to be and dream as grand as the stars without me tossing a huge obstacle their way – an obstacle they feel guilty not to care for.
Now, when they have their own kids – that’s when the clock starts ticking for them. Their children are their choice, as mine were my choice. If they have a disabled child, that child and his/her care is their responsibility and they need to plan accordingly. They are not to assume their other kids are live-in baby-sitters and future life-long caregivers. (otherwise, I’d have to wonder if that was part of the motivation of having the other children – and I’m not being flip, that is extremely common in some cultures)
(please folks, for the sake of sanity, let’s not pervert what I have said into, Jane thinks a brother taking his sister to the airport when she had no ride is too much to ask)
“I think it’s because some of us view Ashley’s quality of life as being more sacrosanct than the bodily integrity of her organs.”
And if you can explain exactly how the removal of her breast tissue and uterus improved her quality of life (not the assumed catastrophes her parents claimed might one day happen to her), I’ll agree with you wholeheartedly.
Furthermore, won’t Ashley’s little sister suffer from the same quality of life issues from not having had her healthy organs removed?
PS: What about the integrity of her personhood? Is that sacrosant?
(Note to Jane: It is really hard to keep up with the over 200 posts a day on this site, especially given the popularity of this thread and the transgender thread. I was following closely enough to know that you didn’t start the name calling and that your arguments have been above board. I just think people do need to remember that it is easy for Amp or I to overlook comments because we simply can’t pay attention every minute.)
Thanks Rachel. I will really try to give Ampersand the benefit of the doubt that my terseness was all she noticed. And this is sort of the reason I ask people never to raise their voice in a conversation – even when it’s not angry. Because it just seems to elevate the mood and that is probably even easier to find on a board with diametrically opposed views of a very important subject.
Incidentally, I have no idea what you mean by a transgender thread and unless I clicked some funky button, I’m not sure what I could have said on that but I assure you it would have sounded disjointed and out of place since the post would have been meant for this board. Yikes, sorry.
I have apologized for the inflammatory things I’ve said, but I simply cannot participate in this discussion in a situation where an opponent compares those she disagrees with with Nazis.
I believe that this sort of thing is something you’ve indulged in from the very beginning, Jane . . . before I said a single word to you. It’s this tendency, and the mis-characterization of your opponent’s arguments, that I find grating.
Since I cannot continue a discussion with someone who (apparently honestly) believes that her opponents are the moral equivalent of Nazis, I’m out of here.
—Myca
“Furthermore, won’t Ashley’s little sister suffer from the same quality of life issues from not having had her healthy organs removed?”
I have answered this several times , my responce goes upon deaf ears (so to speak) I am begining to feel it’s because it holds a good rational point.
Not everyone has the high likelyhood of getting out of control, possibly life thretening seizures, when hitting puberty.
Ashley is one who has a seizure condition, does her little sister cause I don’t remember reading of one.? This is once again compairing apples to oranges.
You can not compaire Ashley to a healthy coherent developing (mentally as well as physically) child.
“What I have said very consistently is that applying human rights and dignity to a fellow human being is sanctified.”
So you do believe that since my daughter grew to big for me to handle it’s dignified to have strangers come in and help bath her?
While I wonder if 4 years ago this opprotunity could of kept my daughter’s privacy and dignity intact. Allowing only her mother or after my demize a chosen family member hadle this delecate situation for her.
Myca,
Please please stop the melodrama. I am not calling the opposing side Nazi’s. No, I am not.
I do, however, use what happened not even a hundred years ago as an example of what can easily happen in a society that decides to take it upon themselves to say that healthy organs can be removed from mentally disabled people for “their own good.”
And history is a perfect indicator of why that’s dangerous and how something like it’s “for their own good” becomes mass extinction. Maybe you really would be well served to read the book. You’ll find that a society such as that isn’t created overnight. It takes many years of conditioning, many years of dehumanizing one person over another for various reasons.
Dehumanizing Ashley enough to justify the removal of HER healthy organs without HER approval for reasons we IMAGINE she may or may not ever be faced with is an affront to her dignity and her human rights. And it is not unforeseeable how Ashley begins the dangerous tide in a direction you couldn’t fathom.
“I have answered this several times , my responce goes upon deaf ears (so to speak) I am begining to feel it’s because it holds a good rational point.
Not everyone has the high likelyhood of getting out of control, possibly life thretening seizures, when hitting puberty.
Ashley is one who has a seizure condition, does her little sister cause I don’t remember reading of one.?”
-Kimberly, I don’t want you to think I am intentionally ignoring your post. I’m too lazy to look but I’m fairly certain that I did respond to it in an earlier post. Ashley’s parents have never said she suffers from seizures of any kind. So to suggest a seizure disorder was present that may have been exacerbated by puberty is unfounded.
So I am still very curious to understand how Ashley’s life was improved by removing healthy organs – in a way in which the same benefits weren’t applied to her sister. After all, the possibility of uterine and breast cancer applies to both girls in the future.
If the only answer available is that the difference is that Ashley is mentally disabled and, therefore, it’s been decided she doesn’t need or have a right to her healthy organs – then that’s fine.
Unfortunately, I can’t change someone’s mind who believes that way. But I can ask them to own the HONEST reason why this procedure was GOOD to do to Ashley and VERY BAD to do to her normal sister. I can ask people to stand by that and not fabricate excuses like the fear of future cancer, knowing full well that if that were the HONEST reason then it would apply to her sister as well.
That’s all I ask. If we’re going to support the maiming of a mentally disabled human being, we should do so by saying that their mental disability is the distinguishing factor why it was allowed in them and not in someone else.
And if that fact is too uncomfortable or sounds too ugly for some of us to accept, then maybe we should evaluate why. And maybe we should rethink that position.
Everybody gets incredibly excited about the Holocaust, and for good reason. Before you leap down my throat, my family was Jewish.
I don’t have a problem talking about it. I have a VERY big problem with people who deny the Holocaust ever existed, and the German libraries who censor any reference to this shameful period of their history.
It is a good analogy. There were good people in Germany who went along with what Hitler said. His explanations of the seeking of perfection (a ‘master race’) for their people hit a nerve in the population; the part of all of us that despises disorder and confusion. He was offering utopia, and the German people grasped hungrily at the concept, without looking closely at the rationale. German people around Auschwitz were told that it was ‘a sausage factory’. Most suspected otherwise.
Of course there were still people who objected strenuously and sympathised with the Jewish people. If they were caught sheltering a Jew, they were shot. Good disincentive to stop.
It wasnt just Jews that Hitler killed. He killed dwarfs, and twins; gypsies and Catholics. And amongst them, people with disabilities. Hitler dehumanised these people, who were less than perfect, making it easier to rationalise atrocity. And that is what we are doing to Ashley, carrying out an act of atrocity through rationalisation ‘she has no intellect, and therefore this or that is important’; ‘her comfort is of prime importance and it doesnt matter how we achieve that’.
Kimberley, your comment about your daughter’s dignity – I understand where you are coming from, but you are wrong. A valid comparison would be ‘should we give her a colostomy bag so we can retain her dignity’? That would be changed by strangers without ‘touching her private parts’. Of course not. Dignity is retained by working with the person with sensitivity and compassion; it is just our ingrained values and preconceptions that make it undesirable for anyone other than family members to work with our children. And we are not just speaking of people with disabilities; if you go to your local nursing home, you will encounter the same situation. Disability is not dignified, neither is ageing. It is our response to both which creates the condition of dignity; by obeying and implementing the concept of basic human rights.
***
If Ashley had seizures which were directly linked to her menstruation – and this will never be proven, as she will never attain puberty – they could easily be controlled by administering a progesterone-only birth control agent and/or an anticonvulsant medication or by injecting progestins. The reason a lot of women with epilepsy have increased seizures with menstrual activity is because oestrogen promotes seizures; progesterone reduces it. That is why a lot of women with epilepsy suffer less convulsions after menopause. There have been many documented cases of women having hysterectomies to prevent seizures, but the percentage of women who suffer hormone related seizures is not particularly high – certainly not high enough to ratify performing major surgery on a child prior to her attaining puberty and finding out if her seizure activity actually does increase. It is not a given, and depends from person to person. I don’t have any information on how many seizures Ashley experiences daily, weekly, monthly, whether it is related to her brain injury or whether she has another condition like non-focal epilepsy, and unless you have information I am not privy to, I don’t think speculation about possible ratification for her intrusive surgery is viable. I am sure if the parents had valid medical evidence that it would benefit Ashley they would cite it at the first opportunity – given that the rest of their reasons are fairly emotive and flimsy ‘remove her breast buds in case she is raped in care’.
Kimberley, you said, ‘You can not compaire Ashley to a healthy coherent developing (mentally as well as physically) child.’ This is what it all comes down to. Yes, you can. You must. Ashley has the same rights as a ‘healthy coherent developing (mentally as well as physically)’ child. ‘ We must treat them equally, because they are both humans. This is what disability and human rights is all about; and this is what you should be fighting for for your daughter.
“Kimberley, you said, ‘You can not compaire Ashley to a healthy coherent developing (mentally as well as physically) child.’ This is what it all comes down to. Yes, you can. You must. Ashley has the same rights as a ‘healthy coherent developing (mentally as well as physically)’ child. ‘ We must treat them equally, because they are both humans. This is what disability and human rights is all about; and this is what you should be fighting for for your daughter. ”
My own wishes (as expressed in living will and in discussions with my husband and other family members who might be tasked with making medical decisions for me if I’m incapacitated) differentiate between what treatment I’m to receive if I’m physically disabled but mentally competent, vs if I’m physically competent but mentally disabled. I don’t want myself “treated equally” under those scenarios.
BTW, if Ashley has the same rights as the healthy “normal” child and must be treated equally, I have a question. Let’s say (again heaven forbid) both 18 yo disabled Ashley and 16 yo “normal” sister are raped and become pregnant. Jane has indicated that if she were the guardian, she would automatically seek out an abortion for Ashley(a move with which I’d personally concur). Would she automatically do the same and insist on an abortion for the normal 16 yo, who might theoretically have a different point of view and be opposed to abortion? After all, if your perspective is that they must be treated equally, it would seem that you’d do exactly the same for both daughters, unless I’m missing something.
>>Unfortunately, I can’t change someone’s mind who believes that way. But I can ask them to own the HONEST reason why this procedure was GOOD to do to Ashley and VERY BAD to do to her normal sister.>>
Because the normal sister is capable of understanding the discomfort of menstruation at an intellectual level, and can take her own steps (Advil, etc.) to treat or deal with discomfort. Because the normal sister is capable of doing breast self-exams and having a doctor examine her breasts, give a pap smear, etc. without needing to be sedated. Because the normal sister can reasonably be expected to actively desire her uterus and breasts for future childbearing, and then to make her own reproductive decisions as an adult. That’s why the procedure would be VERY BAD to do to the normal sister.
Suzanne, you are talking about reactive scenarios. If Ashley had cancer, I would have no problem undertaking to have her uterus removed if she were my child. If my ‘normal’ (and dont we love that word) child had cancer it would be her decision whether to undertake surgery.
If Ashley was raped, ditto. If there was a situation which required a guardian or power of attorney to undertake a decision on her behalf, I have no issue with that. But we are talking about so called radical preventative measures which have been undertaken on behalf of a person who cannot speak for herself. Is there something you are missing about that?
We are not speaking of the decisions that Ashley’s caregivers must give to her daily in order to sustain life. Obviously. But if her ‘normal’ sixteen year old sister had a condition, say, that enabled her to speak (with ‘normal’ intellect) but not have full mobility, and SHE said that her ‘breast buds’ made her uncomfortable when being strapped in her wheelchair, and that perhaps at some stage she might be raped in care, do you think a surgeon would consider removing her breasts? THINK about it. No. The caregiver would identify ways to make her more comfortable, perhaps by modifying the straps, or identifying family members who would be responsible for her care in the future. I strongly doubt that her perceived distress would be given weight with preventative surgery. And that is if she had a voice – Ashley does not. You’re discriminating and basing it on Ashley’s awareness. If rights are inalienable, they exist whether the person is aware of them or not.
Opinions I agree with; ‘Medicine’s role is to relieve pain and improve function, but Ashley was not sick, and the treatment was untested; do we really want to start bending the rules in the case of the disabled just for the promise of some benefit in the future, advocates ask? That’s not healing, it’s gambling.’
“Ashley may be an extreme case; but she is a terrifying precedent. Critics note that for brain-damaged children, development can come very, very slowly — so deciding when she’s only six to change a child’s body irreversibly can amount to a medical form of identity theft. Frequent touch is indeed important; but is it really so much harder to hug someone who is 5’6,” or bring her to the table at dinnertime? Turning people into permanent children denies them whatever subtle therapeutic benefit comes from being seen as adults. “I know they love their daughter,” says Julia Epstein, communications director for the Disability Rights Education and Defense Fund,(www.dredf.org) and the mother of a disabled child. “But they refer to her as the pillow angel. I know that’s meant to be a sweet term, but it’s terminally infantalizing.” Her organization issued a statement affirming that “we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct.” With the right information and support, disability rights advocates believe, there is no need for a medical solution to an essentially social problem. ”
“Doctors watching it all from the sidelines note that there are serious medical questions at stake. For one thing, there is no way to know the effect of high-dose estrogen on such a young girl. ”
“Those troubled by the Ashley treatment as a medical fix for a larger social problem are watching the direction that Britain is taking. The Royal College of Obstetricians and Gynecology has proposed that doctors be allowed to kill the sickest infants — which is already legal in the Netherlands. “A very disabled child can mean a disabled family,” the college wrote to the Nuffield Council on Bioethics, and urged that they “think more radically about non-resuscitation, withdrawal of treatment decisions… and active euthanasia, as they are ways of widening the management options available to the sickest of newborns.” At least in Ashley’s case, however much the doctors debated the proper “management options,” they all agreed that her life had a value worth fighting to preserve. But as a standard, that’s a pretty low bar to set. ”
Your quote -‘ After all, if your perspective is that they must be treated equally, it would seem that you’d do exactly the same for both daughters, unless I’m missing something. ‘
You are missing something.
There is a big difference between equality and fairness. If you, Suzanne, had a massive heart attack whilst in a group of people, and I, as a medical professional, refused to resuscitate you, saying, ‘Gee, sorry Suzie! I can’t resuscitate you! I’d have to do it for everyone, because I believe in treating everyone equally. And really, I don’t have time to resuscitate everyone, so sorry. Take a deep breath,’ ; would that be appropriate? Of course not. Fairness is treating people according to their need, which is what you believe you are arguing. The problem with that is that this so called ‘treatment’ is supposedly addressing Ashley’s *perceived future needs*, based on the perception that her parents have about her care and future care. It is not based on Ashley’s current and actual and documented needs. And to your comparison of the ‘normal’ sister and the ‘disabled’ sister and their needs – would the ‘normal’ sister be able to predict her future rape in a care setting? Could she perhaps predict that she will have large breasts and a history of related health issues, including (non genetic tested) breast cancer? Give me a break.
I don’t know if you realise how ablist and upsetting your comments, and this whole argument, are to a person with a disability. We *already* have shitty care; poor quality of life; people making demeaning comments and valuing us less than so called ‘normal’ people. When I read that Ashley’s parents had said this, “The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby,” I almost vomited. I get it; disability is grotesque. You can try and rationalise and justify it all you like – it is not FAIR to discriminate against somebody because of their disability. Unjustified butchery, even by well intentioned parents, is discriminatory. So are comments like yours.
Sam,
Hitler didn’t mutilate those people in an effort to improve their quality of life. There’s no plausible argument by which what Hitler’s thugs did can be compared to what Ashley’s parents did.
When I read that Ashley’s parents had said this, “The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby,” I almost vomited. >>
Where did you read this? Because Ashley’s parents didn’t say this. Someone else (George Dvorsky, an ethicist who wrote an article about this case) did. In the interest of fairness, I hope you would agree that it’s important to actually read the parents’ blog and represent their reasons accurately, even if you don’t agree with them. If the commenters on this thread had done so, it would be evident that the fear-of-her-being-raped-and-getting-pregnant was a side, incidental benefit of the hysterectomy, not the primary as has been alleged.
“Hitler didn’t mutilate those people in an effort to improve their quality of life. There’s no plausible argument by which what Hitler’s thugs did can be compared to what Ashley’s parents did.”
Hilter’s rationale was even stronger than the quality of life for one person, it was for the betterment of all humankind. Essentially, the quality of life for all citizens would be improved.
And NO ONE has compared Ashley’s parents to Adolf Hitler – it’s a mistatement.
What I believe Sam has said and I have definitely said is that the process of making the Ashley Treatment normal protocol for all children just like her is not even a stone’s throw from a path to extending the criteria to include people with Cerebral Palsy and then people with Down’s Syndrome – and then why not MS.
You think that’s an extreme leap, yet it’s an extremely logical step towards “quality of life” for all – for them and their overburdened family members.
Years will go by performing these “treatments,” thereby desensitizing us all to their acceptableness. And that goes a LONG way in dehumanization and all the atrocities that follow.
“George Dvorsky, an ethicist who wrote an article about this case.”
Suzanne, you’re right about where the quote came from. Since it’s in her paren’ts blog, I’m sure it’s easily misperceived as being theirs. I mentioned his quote earlier. It was disgusting to come from anyone – but from a medical “ethicist.” Yeesh!
As for the rape/pregnancy scenario if I were the parent of a girl like Ashley, who couldn’t possibly make the decision of intercourse, medical care or a pregnancy termination on her own, I would make ALL of my decisions on one central principal – let’s keep Ashley as “whole” of a human being as she can be. I don’t think forcing someone’s body to carry out a pregnancy from a forcible rape is trying to make them whole after the attakc, it’s actually forcing them to now live with further consequences from that attack.
I would believe no differently than if someone stabbed Ashley. Every effort should be taken to control her bleeding, close the wound and apply sound medical care so that Ashley is as close to her condition prior to the attack. And isn’t that what we all want? To regain our sense of whatever “normalcy” is to us?
And what would I do with a 16 year old? Well, let’s see…..if Ashley developed a malignant tumor in her kidney, I’d want it removed. If my “normal” child developed the same tumor, I’d also want it removed. But if my “normal” child happens to be 16 and is refusing, kicking and screaming that she will never undergo a surgical procedure (despite being under age), what can I do? I cannot bonk her over the head and drag her into surgery.
And that’s the central theme here – when a child is incapacitated such as Ashley, we do have to make decisions we wouldn’t for a mentally unimpared child. However, those decisions should never be to dehumanize the individual by unnecessary procedures we’d deem criminal in a healthy child.
What I believe Sam has said and I have definitely said is that the process of making the Ashley Treatment normal protocol for all children just like her is not even a stone’s throw from a path to extending the criteria to include people with Cerebral Palsy and then people with Down’s Syndrome – and then why not MS.>>
I don’t see where the Ashley Tmt is being advocated as normal protocol for all children just like her. Her parents make it clear on their blog that they’re not advocating for it to be standard operating procedure.
Was the process of pulling the feeding tube for Terri Schiavo a stone’s throw from advocating pulling the feeding tubes of anyone who wasn’t physically or mentally “perfect”? I don’t think so. I think the slippery slope argument isn’t a particularly good one. It’s reminiscent of the if-you-allow-gays-to-marry-then-what-stops-people-from-marrying-their-dogs-and-children. I prefer to take one argument at a time.
As for the rape/pregnancy scenario if I were the parent of a girl like Ashley, who couldn’t possibly make the decision of intercourse, medical care or a pregnancy termination on her own, I would make ALL of my decisions on one central principal – let’s keep Ashley as “whole” of a human being as she can be. I don’t think forcing someone’s body to carry out a pregnancy from a forcible rape is trying to make them whole after the attakc, it’s actually forcing them to now live with further consequences from that attack. >>
And that’s certainly a valid central principle and I see where your logic flows from it. I think others (myself included) are choosing our central principle as “let’s make Ashley as comfortable and happy as she can be.” From that principle flows “and let’s keep her in her family circle as part of her loving family as long as possible vs a nursing home” and from that principle, the growth attenuation flows.
Suzanne, you’re right about where the quote came from. Since it’s in her paren’ts blog, I’m sure it’s easily misperceived as being theirs. I mentioned his quote earlier. It was disgusting to come from anyone – but from a medical “ethicist.” Yeesh!>>
I agree that that particular quote doesn’t help matters any. Our (=society’s) perceived discomfort with the size of her body relative to the level of her mental cognition is irrelevant, IMO.
>>However, those decisions should never be to dehumanize the individual by unnecessary procedures we’d deem criminal in a healthy child.>>
YK, I can see your point when it comes to the growth attenuation piece. I’m less likely to view the hyst and br bud removal as dehumanizing, though. Women with hysterectomies and women with flat chests aren’t any less human.
“I don’t see where the Ashley Tmt is being advocated as normal protocol for all children just like her. Her parents make it clear on their blog that they’re not advocating for it to be standard operating procedure.”
-I would disagree with that statement and here’s a quote from Ashley’s parents (yes, I read their blog beginning to end before making even the first post):
“Families of other kids may likewise find the “Ashley Treatment” to be the right approach for them. It is our hope that this treatment becomes well-accepted and available to such families…”
“Was the process of pulling the feeding tube for Terri Schiavo a stone’s throw from advocating pulling the feeding tubes of anyone who wasn’t physically or mentally “perfect”?
-No it WASN’T and you ignore the distinction. The court found that Terri Schiavo made several comments PRIOR to her mental incapacitation that she DID NOT want to live by artificial means. And, frankly, it’s not such a stretch to believe she voiced that opinion. Though I’m sure one must exist, I have yet to find one single human being that doesn’t passionately insist they DO NOT want to be kept alive by natural means in the case of PVS.
“And that’s certainly a valid central principle and I see where your logic flows from it. I think others (myself included) are choosing our central principle as “let’s make Ashley as comfortable and happy as she can be.” From that principle flows “and let’s keep her in her family circle as part of her loving family as long as possible vs a nursing home” and from that principle, the growth attenuation flows.”
Suzanne, I believe MrSoul in post #322 touched on this and he was spot-on right. The two sides of this issue really begin with such a vastly different perspective on what the grander good is that we simply cannot bridge that gap.
Allow me a quick sidebar….there was a boy who was raised as a girl after a botched circumcision. He published a book a couple of years ago lambasting the medical teams that approved this (they wound up removing his testicles and giving him hormones to be more feminine growing up, though he never was). Do I think his parents did that out of hatred for their son? Definitely not, no more so than I think Ashley’s parents hate her.
But I think it’s very tempting to take one’s eye off the ball here. I think it’s very tempting to miss the forest for the trees. It’s just so tempting to say, hey, in this one single case it was okay because this family has gained enormous time and financial easement and the child will likely benefit as a result of their benefit (i.e., if their lives are easier and they’re happier, she’ll ultimately benefit).
And, by the way, I get that. I see it – it’s tangible, so it’s terribly hard to ignore. But it’s the intangible I know is getting missed. It’s the stuff that’s not in our faces, the stuff that’s not so obvious – that’s the stuff everyone just flicks off like a a bug on the shoulder.
It’s the physical and psychological dehumanization concept and the indignity that grabs me first. That’s where I begin, and the practicalities of the Ashley Treatment and associated issues follow.
The opposition begins with the practicalities of the Ashley Treatment and associated issues and then follow with the human rights issue.
And that’s the reason this bridge cannot be gapped.
“Women with hysterectomies and women with flat chests aren’t any less human.”
-Absolutely right. I said earlier, we are more than the sum of our parts and I think that’s where a big confusion unfolds. The opposition somehow thinks that because I find the Ashley Treatment unconscionable, that I am opposed to removing organs or that I find people with organs missing to be less than human. Or that parents who have had to make those difficult decisions “monsters.”
A uterus is nice to have, but hardly necessary for life – or breasts or testicles. I would probably even call them the “wouldn’t it be nice to have” parts, though it sounds crass.
But removing HEALTHY ones – that’s criminal. And to remove them for some imagined benefit of another human being simply because they’re mentally disabled and cannot stand up and protest is unconscionable. I used that description a lot because it pretty much encapsulates it for me: unconscionable!
And why? Because of the gross violation of our inalienable human rights and dignity. Because to remove them from ourselves (whether because we hate menstrual cramps or want to eliminate the chance of future malignancy) is completely ACCEPTALBE – and that IS supported by those inalienable human rights we are born with. And to remove them from our children whose life is at risk – gee, that’s a no-brainer, I’d hope. I’m more bothered by the parent that puts so more stock in a young girl’s ovaries when faced with a germ cell ovarian cancer and refuses the most aggressive treatment to save their child’s life.
And to remove them for some imagined benefit of another human being simply because they’re mentally disabled and cannot stand up and protest is unconscionable.
It would appear, then, that it is impossible to care for a person who is mentally disabled, and about and for whom decisions must be made, in a conscionable fashion.
Since you accede to the idea that it would be acceptable for a person to choose to do this for themselves, and since (I assume) you understand that Ashley will never be able to make this decision for herself, the final result of the logical process would seem to be that you don’t believe people who can’t describe (or conceptualize) what they want, should ever get medical care.
“It would appear, then, that it is impossible to care for a person who is mentally disabled, and about and for whom decisions must be made, in a conscionable fashion.
Since you accede to the idea that it would be acceptable for a person to choose to do this for themselves, and since (I assume) you understand that Ashley will never be able to make this decision for herself, the final result of the logical process would seem to be that you don’t believe people who can’t describe (or conceptualize) what they want, should ever get medical care.”
-Nice mischaracterization. But, I’ll try to respond anyway.
If caring for a mentally disabled child means you authorize yourself with stunting their growth and removing healthy organs and limbs for any reason other than malignancy or life and death, then yes – I suppose it would be impossible for you to care for a mentally disabled child.
If, however, you view this child as a human being with rights equal to that of your healthy children, then it’s not so impossible. You need only apply the same logic in evicerating their organs that you would your other children. Is shrinking your other kids and popping out some healthy organs acceptable in them?
Is shrinking your other kids and popping out some healthy organs acceptable in them?
If they have Ashley’s medical status? Certainly.
It is a question of the medical status, and the consequences thereof, that must be managed by someone. That someone is Ashley’s family. Ashley has the same right that her siblings have: that her parents make the best decisions they can make on her behalf, for as long as she is incompetent to make them. You disagree with their decision, emphatically, but that does not make it incorrect.
If we accept that people have a right to make decisions, then we must respect the fact that they will make decisions we do not agree with, within the parameters of the law. Ashley’s parents are acting within the parameters of the law, and seem sincere in their desire to maximize the quality of Ashley’s life.
If you believe that there should be legal sanction against such actions, then I would encourage you to seek remedy through the legislative process. I believe you will find that most people – even those not fully comfortable with Ashley’s parents’ choices – nonetheless come down on the side of the idea that as a matter of law, loving parents must be the ones to make the final call.
If you aren’t advocating for such, then it seems to me that it boils down to “some people made a moral decision I disapprove of!” In which case, great – join the club. (As new member, please bring donuts to your first meeting.) But at comment #355, it seems like it’s gone on for rather a time.
>>uterus is nice to have, but hardly necessary for life – or breasts or testicles. I would probably even call them the “wouldn’t it be nice to have” parts, though it sounds crass.
But removing HEALTHY ones – that’s criminal. And to remove them for some imagined benefit of another human being simply because they’re mentally disabled and cannot stand up and protest is unconscionable. >>
Jane, first off I thank you for the civil discourse we’re having now.
Let’s suppose that the current situation was never on the table in the first place, and that instead, Ashley’s parents were seeking permission from the hospital to have a prophylactic appendectomy performed on their daughter. Their rationale was that there is a 4-5% chance of appendicitis in the general population and that Ashley would be unable to communicate pain should it occur. Would you characterize this situation as any different from a prophylactic hysterectomy, and if so, how? Is the bodily integrity of keeping an appendix appreciably different from the bodily integrity of keeping a uterus?
Suzanne, likewise about the civil discourse – it’s better for us both. ;-)
In principal, I wouldn’t feel any differently about the appendix – should’ve been left alone.
Now, this sort of opens up a subject I didn’t want to delve into because it’s not the point of my objections. However, for a moment, I’ll take it on. I’m fairly sure Ashley’s inability to describe a pain is bogus.
Ashley’s parents say in their blog that “Ashley’s biggest challenges are discomfort and boredom,” which are odd descriptions for a child with virtually no cognitive ability. If she can feel “discomfort,” as they claim, then she can certainly feel the excruciating pain of an appendix acting up.
Incidentally, I wouldn’t have supported removing Terri Schiavo’s uterus, breasts or appendix either and I think by everyone’s account, Ashley is pondering mathematical theorems by comparison to someone in PVS. Yet, I did support removing her feeding tube by the principal that it was determined to be what SHE WANTED should that condition ever befall her.
I remember myself being newly married at 23 and my husband and I talking about the Nancy Cruzan case and that we both felt very very strongly that PVS was no way either of us wanted to spend one single day on this earth; that we considered that our time to leave. Young couples, despite what the Schinder’s wanted to believe, do have many philosophical discussions of a serious nature.
Jane: “Is shrinking your other kids and popping out some healthy organs acceptable in them?”
Robert: “If they have Ashley’s medical status? Certainly.”
-Well there ya have it Robert, you’ve decided this unconscionable for a healthy child and perfectly fine for mentally disabled child.
“If we accept that people have a right to make decisions, then we must respect the fact that they will make decisions we do not agree with, within the parameters of the law.”
-There are a great many laws that are made because of situations just like this one. A group of folks were pursuaded to alter the body of a mentally disabled girl so life would get easier on the farm – and I think you’re terribly mistaken about how the general public feels about this, to say nothing of how the disabled themselves feel. Have you done a news search on this? Even on an international perspective there’s been a collective gasp! It’s embarassing.
We extend people the right to make decisions for themselves and their minor children, within the law. But our laws can hardly be prepared for the million things a desperate and misguided parent thinks of – which is why we write more laws to curb the copycats.
I sure hope the Seattle physicians are reprimanded for this – so much so that another doctor wouldn’t dare even consider it. As for “ethicists” like George Dvorsky who have clearly stated that an adult with a significant mental disability is “grotesque” well….talk about a wolf in sheep’s clothing! And Ashley’s parents include his quote on their blog about their child. Ugh, I don’t know which is more pathetic!
Now, this sort of opens up a subject I didn’t want to delve into because it’s not the point of my objections. However, for a moment, I’ll take it on. I’m fairly sure Ashley’s inability to describe a pain is bogus.
Ashley’s parents say in their blog that “Ashley’s biggest challenges are discomfort and boredom,” which are odd descriptions for a child with virtually no cognitive ability. If she can feel “discomfort,” as they claim, then she can certainly feel the excruciating pain of an appendix acting up.>>
I agree with you that she can feel the pain of an appendix acting up. And that she can communicate that she feels pain by crying. However, that doesn’t mean that she’s then able to communicate WHERE the pain is, or that it’s “serious” pain requiring medical intervention to avoid calamity versus “non-serious” pain (such as an upset stomach). One would like to hope that she’d be able to grab her stomach and indicate accordingly where the pain is, but given that she’s described as not being physically able even to move a stray hair that bothers her from her face, it sounds that she would be unable to indicate “it hurts right here” in such a way that an onlooker could distinguish between minor tummy-ache and oh-my-goodness-get-her-to-the-ER.
Well there ya have it Robert, you’ve decided this unconscionable for a healthy child and perfectly fine for mentally disabled child.
Yes. Obviously.
In fact, how it is conceivable for any rational person to not recognize that there will be a host of parenting choices that would be unconscionable for a healthy child, and perfectly fine for a mentally disabled child?
It’s a disability – as in, the person has less ability, or no ability, to handle some things. Which means different decisions must be made.
In fact, how it is conceivable for any rational person to not recognize that there will be a host of parenting choices that would be unconscionable for a healthy child, and perfectly fine for a mentally disabled child?>>
Exactly. For example, it would be unconscionable for a family to put a healthy child in a nursing home, but (according to the folks here) it’s perfectly hunky-dory, and in some cases preferred, to put a disabled child in a nursing home.
The only comfort I get out of this event is that the decisions are being made by people for whom Ashley is a human being, worthy of respect and dignity. The same decisions made by the staff of a hospital, for whom she would be nothing more than a line item on the budget would be far more suspect. I respect the rights of family to make this decision on her behalf, I would not respect the rights of the hospital to do so on her behalf.
Well, I would hope and expect the hospital staff to also bear in mind her innate and ongoing humanity. I would h&e everyone to. But her family is certainly the closest and most motivated group to mind her welfare. I do agree with the necessity of having an ethical board review such cases, because there are people (parents or no) who would not be thinking of the patient’s needs. There should be discussion and airing of these controversial or borderline cases. (The amount of intervention being done for Ashley does throw up a red flag, one that I’m glad there’s an ethics group to observe and make a judgment on.)
If my child was given the choice to stay short enough for mommy to carry or grow, in my heart , mind and soul ….. I know she would want to have her growth stunted. I see it now. The confussion on her face , why can’t I scoop her up and save her when she crys. Instead I crawl in her bed and lay next to her and sing to try and calm her. Scooping her up was an instant cure for her. This laying in bed thing takes a little more time and understanding on her part which is a real trick. It takes constant repatition to ‘train’ her that this is what needs to happen now. FYI, she’s not crazy about it.
I believe if this was offered to me four years ago I would have jumped on it. I truely feel the parents did this out of love. Is it right ????
I don’t know. But I can’t believe they did it for any other reason.
I think the precedent that the Ashley Treatment potentially sets up is that the caretaker’s quality of life is more important than that of the person being taken care of. We also already know, although few are saying, that the Ashley Treatment is significantly cheaper in the long run, because her care will remain primarily in the hands of her family, as opposed to requiring increasing respite and assistance care and equipment, and possibly ultimately nursing home care.
So while I think that Ashley’s parents honestly tried to the best of their ability to make a good decision with Ashley’s best interests in mind, I also think it would be disingenuous to ignore that their choice also had a significant positive impact on *their* future quality of life and on the future costs of providing care for her. I already know one parent who wishes the Ashley Treatment had been available for her child – I’m sure there are many others.
I’m not sure why some folks ignore the “caregiver mirror” effect.
that’s my own personal phrase for one of life’s realities: the overall care received by someone is often related to the happiness of the person giving the care.
That’s why, oddly enough, my children’s care is improved by being babysat sometimes. Is the babysitter “good” for them? No, not really–she’s competent, but not as good as my wife and I.
But when my wife and I go out to dinner and get more relaxed, and have a moment away from our children.. well, we become better parents during the rest of the time. And in the long run, this benefits our kids. It benefits our kids EVEN THOUGH there’s a cost to our leaving. Even though it makes them sad.
Of course, if you were to ask our KIDS what they thought, they would say they wanted us to stay home all the time. That’s because they can’t see the forest for the trees–they can’t take the long view. They don’t understand life yet.
My good friends have a severely disabled son. they do what they need to do to keep themselves sane. Why? because if they couldn’t handle it, they’d have to put him in a home–where he’d be much worse off. Of course, the child doesn’t like it. He’d rather have perfection. he’d rather push his parents to the limit; he has no comprehension that they might crack.
but they are only human. So are Ashley’s parents. They are entititled to make a good decision for their child–and to include an honest assessment of themselves ni the equation. Sure, some people might be able to handle Ashley no matter what. people come in all kinds. But we can’t expect everyone to be perfect. We can’t expect all parents who happen to have a disabled child to be the pinnacle of enlightened giving caring folk who are willing to work the skin off their bones just to get everything perfect.
Jane, here’s a hypothetical for you:
Assume Ashley’s parents can’t handle her without the treatment. And if they can’t handle her, they’ll put her in a home. What do YOU think Ashley would want?
Jane writes, in several parts:
And that’s a significant difference — individual rights aren’t the same as collective rights. Nor was Hitler claiming that the medical experiments being performed were actually going to benefit society in some tangible way other than “Let’s kill all the undesirables!” Some useful information has come out of the medical experiments which were conducted during his reign of terror, but by and large they weren’t beneficial to humankind. They were just cruel ways of killing people he didn’t much care for. Not ways of making sure that little boys and girls are cared for by their parents — ways to torture and murder people by the millions.
I don’t think you can make the kinds of statements you make here, in the text I quote above and below, and then claim that no one is comparing Ashley’s parents and caregivers to Hitler. It’s intellectually dishonest.
It’s far more than a stone’s throw. It’s a suborbital rocket launch away — Ashley isn’t just incapable of providing for her own care in some kind of “Will never hold a middle class job, providing financial support above the poverty line” sense of care, Ashley cannot do ANYTHING for herself. Having known people with the conditions you list above, Ashley isn’t just not in the same neighborhood, she’s not even on the same continent.
Yes, I think it’s an extreme leap, in large part because the needs of individuals and the needs of society as a whole aren’t the same. Society as a whole isn’t counting on Ashley’s parents to pick all 6+ billion (or 300 million, or even the population of her home town) of us up and care for us. Ashley, as an individual, has specific needs for her individual care in her individual situation. I don’t need my mother to pick me up and show me that she loves me. I don’t depend on my father to feed me, dress me, change my diaper, keep me from being bored instant by instant, or any of the other needs that Ashley, as an individual, needs.
Or it could present new ways of dealing with extremely difficult, highly individualized circumstances. Ways of dealing with them that stop tearing children from their homes because they’ve simply become too big to be cared for by aging parents or sibblings with families of their own.
The problem with slipperly slope arguments (besides being logical fallacies) is that they often assume the slope goes one way. It is equally possible, and equally invalid as the basis for an argument, that this is a good thing that will improve the quality of life for future Ashley’s and their parents.
“I think the precedent that the Ashley Treatment potentially sets up is that the caretaker’s quality of life is more important than that of the person being taken care of. We also already know, although few are saying, that the Ashley Treatment is significantly cheaper in the long run, because her care will remain primarily in the hands of her family, as opposed to requiring increasing respite and assistance care and equipment, and possibly ultimately nursing home care.”
-Couldn’t have said it better myself. And, yes, I’ve pointed out various times that the parents had a HUGE conflict of interest here.
For more on conflict of interest, imagine we could purchase organs. The next time the parent of a six year old who is on a respirator, having suffered from massive brain injury, the doctor says, “it’s better to remove life support and, by the way, her organs will yield you about 300,000 from some wealthy families who need them.” Those parents may desperately love that child, however, it is impossible for anyone to understand how much of a role the financial gain played in them removing life support today vs. a week from now. (And don’t think for an instant that families who’ve been told of irreperable brain damage immediately following an injury haven’t been wrong – not often, but it happens)
Point being, the parents CANNOT ignore the obvious. Ashley’s resizing and organ removal made their life far more comfortable – physically and financially. Were their motivations about Ashley only? No, not by a long shot.
When factors like money are involved, nothing is as pure as you want to believe.
“I’m not sure why some folks ignore the “caregiver mirror” effect.”
-Not only haven’t I ignored it, I’ve raised it. I recognize that reality. But if you’re talking about surgically removing your child’s healthy body parts and shrinking them into minatures…..and if you don’t think that takes the “caregiver mirror effect” way over the cliff, well, what can I say.
“Assume Ashley’s parents can’t handle her without the treatment. And if they can’t handle her, they’ll put her in a home. What do YOU think Ashley would want?”
-To be treated with the same dignity as every other human being worthy of their own person.
If parents need to remove healthy organs and shrink their disabled kids so they’re easier to manage and to improve caregiver quality of life (which I agree is what this was about), they might want to consider other alternatives. Perhaps not having more children that will, naturally, increase the burden of time and expense. But cutting and pasting your child like you’d do in a graphics program to edit what you don’t like, that should never be an option – moral or otherwise.
“I don’t think you can make the kinds of statements you make here, in the text I quote above and below, and then claim that no one is comparing Ashley’s parents and caregivers to Hitler. It’s intellectually dishonest.”
-I did not and if you bothered to read what I DID SAY, you would know that. I was clear that this is how annihilating the disabled begins, very slowly. That I think the Ashley Treatment, in broad spectrum use could unfold into a sampling of the Holocaust, ABSOLUTELY.
Now if that reads as calling Ashley’s parents Hitler, then think what you like.
“Or it could present new ways of dealing with extremely difficult, highly individualized circumstances. Ways of dealing with them that stop tearing children from their homes because they’ve simply become too big to be cared for by aging parents or sibblings with families of their own.”
-Entering this world, we have NOTHING but our bodies. That’s it. And when they fail us and we’re lucky enough to have modern medicine that can intervene and save our lives, wonderful. If saving our lives means we need to remove an unnecessary organ from disease, so be it. But if our own bodies, our rights as human beings, are subject to be maimed to benefit the lives of others – watch out. Today it’s Ashley. Tomorrow it’s all kids like Ashley. Some day it’ll be the Autistic, sufferers of MS, CP, Down’s Syndrome and people with a whole host of challenges – all to ease the burden of the caregiver.
Yes, that is unconscionable.
Jane,
I’m not convinced by slippery slope arguments. If you want to make statements like “Today it’s Ashley. … Some day it’ll be the Autistic …”, I encourage you to read this discussion about slippery slopes from Wikipedia.
You might not be convinced, but at least you’ll understand why I don’t accept your arguments.
Re: slippery slope arguments— But in this case, the parents are *already* advertising this treatment as a wonderful thing for (at least some) disabled children. This makes so-called slippery slope discussions fair game, IMO. How disabled does a child have to be for this treatment to be considered? That’s not at all clear in the real world, where the rights of disabled people are already routinely disregarded. The truth is that any line we might draw between “severely disabled people like Ashley, on whom we may remove body parts without their consent” and “those who actually have rights” is inherently arbitrary and open to interpretation at the hands of medical professionals who have not always demonstrated respect for the human rights of disabled people.
Many of the arguments advanced by those in favor of this treatment could also apply easily to those with physical disabilities and no mental impairment. (They’re hard to lift, they’ll be institutionalized, they’ll have bedsores.) Many of the other arguments could be applied to many autistic people and others with mental impairments. (Clearly they’re incapable of making decisions for themselves, they don’t understand what’s going on anyway, they’re difficult to handle, we know what’s best for them and they don’t.) So what makes this case so special? I’m sure there are many parents of disabled children who might find this a better, more convenient means of dealing with their child’s physical growth. This isn’t just some special isolated case; it has implications for all disabled people, particularly children. Maybe you personally would draw an imaginary line between Ashley and “less severely disabled people.” But you have to at least acknowledge the possibility that someone else might draw it in a different place. In a society as ablist as our own, that might be a very strong possibility.
Once we decide that some people have more rights than others, we’re entering very dangerous ground. Slippery slope argument? Maybe. But given the current social climate regarding disability, I’m not at all convinced that this argument is without merit. In a world where Go visit parents who murder their autistic children can get off with relatively light sentences, am I really supposed to believe that society will hesitate at removing organs? When so-called autism advocacy organizations have spokespeople who say things like “autism is worse than cancer because with autism you have a normal lifespan”, is it really so crazy to believe that some doctors might think it’s just fine to do this to an autistic child? We’re not arguing in a vacuum, here.
Sarah, exactly. As I said, I know one parent who has explicitly said that she wishes the Ashley Treatment had been available when her disabled child was young.
Jane, I am really bothered by your stance on Ashley’s younger siblings. You seem to be saying that Ashley’s parents should have realized how burdensome her care would be in the long term and therefore decided not to have any more children, in order to devote maximum possible resources to Ashley. Isn’t it pretty harsh to call someone selfish for (apparently) thinking that they could handle a larger family because they didn’t accurately forecast how expensive and time-consuming Ashley’s care would become 3 or 5 years ahead?
That’s the really scary question, isn’t it. I’ve read extensively on the internet, pro and con, on this issue, and Sarah’s discussion is by far the most articulate I’ve found, and best states my own reservations.
In my view, Ashley’s parents are already too far down that “slippery slope,” which is what makes this case so troublesome, and which frightens me when I think how much further down we may go. Their attitude, displayed on their webpage, is further cause for dismay. Rather than exhibiting a normal parent’s disturbance at the prospect of so fundamentally maiming a child without her consent, they seem rather proud of themselves, assert that the decision was an easy one for them, and are more promoting this approach than anything else.
Clearly a line needs to be drawn here; in my opinion, that line should be well on the other side of Ashley. This situation is not only profoundly troubling in Ashley’s case, but has even more disturbing implications for other disabled children.
Sarah: “How disabled does a child have to be for this treatment to be considered?”
I’ve been thinking about this a lot lately. I’m just relieved this surgical desexualization wasn’t available when I was a child.
Will this get to be a popular “treatment”, now that so many people have heard of it? (If this is ever considered “humane”–parents will be criticized for NOT doing it.)
BTW, Susan, do I know you?
Ah, Mr. Soul, I certainly don’t know you under that name, which I presume is not the one on your birth certificate? :) You seem a sensible sort, though, and if I don’t know you I wish I did.
Okay, there is a Susan who posts at both New Mobility and PowerQuad, and I wondered if you were her! She is disabled and has a disabled son, and has been posting a LOT on this issue.
“MrSoul” is courtesy of Neil Young. I’ve been using this name a good long time, and so far, he has never objected. :)
The following quote is direct from Ashley’s parents’ blog and I’ve explored this issue further on the Planet of the Blind…
“The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”
Is it just me? Does anyone else out there find this sentence, coming from “a member of the Board of Directors for the Institute for Ethics and Emerging Technologies” particularly offensive? Unprofessional perhaps? George Dvorsky considers a full-grown and fertile woman with the mind of a baby grotesque? I’d like to know: just what is grotesque about this? Would a woman who requires the level of care Ashley requires be less “grotesque” if she had the mind of a two year old? Or an eight year old? Twenty? Forty-five? See where I’m going with this? At what age, or at what IQ, are people with disabilities who require the level of care that Ashley does no longer considered grotesque in George Dvorsky’s opinion? I’d like to know where he draws the line.
“Isn’t it pretty harsh to call someone selfish for (apparently) thinking that they could handle a larger family because they didn’t accurately forecast how expensive and time-consuming Ashley’s care would become 3 or 5 years ahead?”
-Your kids not wearing their rain gear because you forecasted the weather improperly is one thing. If your inability to forecast the obvious strain of money and time additional children would bring causes you to alter one of your kid’s bodies to make up for it, then you should be faulted. That child shouldn’t pay the price for your carelessness.
Connie, I echo what you’ve said. That is a terrifying person in the field of ethics.
Mr. Soul, no, I’m not the same Susan (though now I’m going to hustle up and read what she’s said on those blogs!) I am not disabled. I do have a mentally ill son, which isn’t quite the same thing.
If your inability to forecast the obvious strain of money and time additional children would bring causes you to alter one of your kid’s bodies to make up for it, then you should be faulted. That child shouldn’t pay the price for your carelessness. >>
Except I don’t see, either implicitly or explicitly, that Ashley’s parents did this because they had other children to take care of as well. They would still want to hold and carry her and transport her whether they were the parents of one or the parents of 10. This part of the discussion strikes me as at best an irrelevant strawman and at worst an ad hominem attack on the parents.
“it would be unconscionable for a family to put a healthy child in a nursing home, but (according to the folks here) it’s perfectly hunky-dory, and in some cases preferred, to put a disabled child in a nursing home.”
-Thus and so, the trade-off goes like this: Gee Ashley, we either keep you miniature and remove your uterus and breasts so mommy and daddy’s lives become easier to care for you or we’ll have to put you into a nursing home.
Of course, even if your sister becomes a trouble teenager who runs away from home and sleeps with every guy around, we’ll still work with her, we’ll still help her and engage professionals to help – we certainly won’t cut off her legs and perform sterilization to make her life or ours any easier. If you’d been mentally whole, we would have had to invest the same time and resources into you – but since you’re not…..
Are you kidding ?? I’m as sarcastic as they come but really ?
Do you know how much time and effort go into having a child that is 100% soley dependent on you? I’m baffled by your way of thinking. I cut out “special” time for my healthy (I don’t really like your use of “normal”) child just so she doesn’t feel like I never have time for her. I can almost bet you that Ashley’s parents spend more time with Ashley than their other children. So that argument is crap. The attention Ashley wants she wouldn’t be able to recive if she was taller than her mother. The attention Ashley needs would be lost if she out weighed her mother.
IMO 3 month old children need to be held they need that closeness. Sadly my 3 month old is 4foot tall and 60 pounds. She doesn’t understand why mommy won’t pick her up and dance anymore. I can’t even explain it to her because she won’t comprehend.
My mistake. I misquoted from another site (where the quote was attributed to Ashley’s parents) – and where anybody found George Dvorsky is anyone’s guess. Ethics my arse. Apologies to anyone offended.
Sarah’s exactly right.
The precedents which have been set for parents who kill their children are just terrifying. Noone is suggesting that it is easy to care for a child with a disability. But how is it okay to kill them, or mutilate them? For ‘their own good’? Because it will be easier? Here is the lowdown – if you kill a child with autism, you will either be released on a good behaviour bond (because of the immense stress you have been under, but apparently also because of the perception that it is a ‘mercy killing’ – and especially if you are Mum, rather than Dad) – but if you kill a so called ‘normal’ child, you will go to jail. Or perhaps be put to death by lethal injection. You can argue til the cows come home about how you were under (an equal amount) of stress due to domestic violence (and anybody who has lived with a violent person will concur that the emotional impact is at least close to that of living and caring for a person with disability) or that you have a mental illness, or that your spouse was killed etc etc and you will not receive the same sentence that a person who kills a person with disability receives. That is because the jury makes a value judgement on the worth of that persons life. And that is rubbish.
I am thoroughly tired of people who argue their heads off about Ashley’s level of cognition as if it is what the whole argument hinges on. ‘Ashley isn’t just incapable of providing for her own care in some kind of “Will never hold a middle class job, providing financial support above the poverty line” sense of care, Ashley cannot do ANYTHING for herself. Having known people with the conditions you list above, Ashley isn’t just not in the same neighborhood, she’s not even on the same continent.’
Thanks, Furry, for clarifying that. As a person with a disability, that makes me feel just great. Jane was talking about ‘ the Autistic, sufferers of MS, CP, Down’s Syndrome’. So people with disability are in a parallel universe, are they? You are placing Ashley’s intellect above her worth as a human being. Having ‘known people’ with the conditions above, you have decided that Ashley’s level of intellectual disability makes her somehow less?
I constantly battle to keep my autistic son in mainstream schooling, and it is comments like yours that make my blood boil. They run parallel with people who comment ‘in the wild, other animals eat the sick and crippled or leave them behind’.
If you believe the thing that makes us human is language or cognition, then that is fine. In that case, you should abolish all thought of humanism and advocate mercy killing. You’re right – ‘Ashley will never be able to do ANYTHING for herself.’ And based on that value judgment of the worth of her life and her quality of life, she would be better off dead.
But if you believe that Ashley is human because of her inherent humanity, her emotional intelligence, and because she is a unique individual, you must grant her the same rights as any other human.
I can hear what you are saying. But you are listening to your emotional self, and putting yourself in (some of you with personal experience) her parents shoes. If you take that aside, and remove the emotion, what you have left is atrocity.
The reason I have been off away from this is because I have been working (this is why I am barely coherent, through lack of sleep! sorry…) but I have been busy with setting up the new program at my workplace for people with a disability. And in the process I have spoken to people who work with people with disability, their parents, and the people themselves. Overwhelmingly the people with a disability say, without fail, it is wrong. There are a few parents who ‘can understand’. Agency providers, too, who see the stressors that parents undertake say they ‘understand’ (but it is wrong). But that is based on our crap health care (which apparently is fairly good in Australia in comparison to other western countries) and lack of respite services. If, say, there were services available for Ashley through your government free of charge, to turn her and feed her and transport her and cuddle her and bathe her and supply a bigger bath and to change her diapers and menstrual napkins, would we be having this conversation? I bet not.
Think about it.
I can’t speak for everyone but I requested respite care in N.J. (USA)
eleven years in a row, I finally gave up. They keep saying funding ran out.
Eleven years !! This year I finally got home health care through medicaid, But they can not do anthing with her feeding tube. (connect, disconect, feeds, meds, etc…) So she gives her a bath and changes her sheets. Yeah she’s allowed to clean her room but um, my daughter’s room is spotless, she doesn’t move a thing.
What else is there to do? I can’t go anywhere because her machine might go off (beeping) and the HHA can’t touch it.
As for bigger bathrooms , you need to call or write to a tv reality show because the gov. isn’t going to help. And you can’t get another income because you will loose her SSI and if you loose that (which doesn’t matter to me, I could make more working) you loose the medicaid. And I personally can not make enough to cover her medical exspences.
It’s a mess !!
Kim,
I don’t think anyone here would dare to argue with you on the lack of support services for families in your place. It sucks. And there’s no excuse for it, and I think what many of us are arguing is that the solution is not to alter and disect people’s bodies, but to FIX THE SUPPORT SYSTEM. It’s the best long term solution. I know it doesn’t help you today and that is frustrating and draining and maddening. But really, if the appropriate services such as respite care, PCAs, equipment and home modifications were available to you at a reasonable cost, would you still so passionately advocate for this kind of treatment? That’s what many of us are saying when we are aghast at this treatment – we have a real live social problem of health care and support services for people who really need them. Rather than turning to the medical community for answers, let’s turn to social policy. If you ask a surgeon for a solution, he’s going to cut you open. If you ask the medical field for a solution, they are going to f*ck with your body. I think Ashley’s parents turned to the wrong institution for solutions.
Jane, you have it backwards, and I think in a very hostile and judgmental way. I didn’t say they didn’t forecast the cost of additional siblings accurately, I said they didn’t forecast the cost (fiscal, physical, and emotional) of caring for Ashley accurately. They chose to try to have as normal a family life as possible, including having additional children, instead of choosing to focus their entire lives around Ashley. You obviously think this was a selfish choice – is this true only in Ashley’s case, or do you think that everybody should stop having additional kids once one is born or becomes disabled? I should say that after reading the Ashley Treatment web page, I think Ashley’s parents would have made the same decision for her *regardless* of how many other children they had.
Kate,
Here’s the problem. It’s never gonna change so we (as parents) have to help our children and ourselves. The gov. says my husband makes too much money. When really we make just enough to cover our expences. If we loose our daughter’s SSI and insurance we’re done. You know what they suggested …
Have another child. The cost of living is higher for a family of 5.
I couldn’t believe my ears ! I save the gov. thousands of dollars a year keeping my child home and being her 24/7 nurse. I left my 40thousand dollar a year job to care for her. No employer wants to here, she had too many seizures today I can’t come in. Or I have three out of state specialists this month I need two days off back to back. Oh I loved the time her school called for me to pick her up because one legg was warmer than the other. I can’t keep a job with the conditions I need, so I am more than happy to live pay check to pay check but that’s not enough for good old uncle sam ….. I’ve written and called govenors, senetors, etc….
They all say “We’re really sorry your family is in this situation. We hope in the near future this will be resolved.” It’s already been 11 years. in that 11 years
the methadone clinics have recived extra funding, the clean needle exchange has been born. The “war on drugs” recived 16 million dollars this year in the budget. DDD recived 1.5 million. Our lottery recived 19 million for machines, machine repair and comercialism. Sometimes parents have to come up with their own way to fix what’s broken to make their child happy.
“is this true only in Ashley’s case, or do you think that everybody should stop having additional kids once one is born or becomes disabled?”
-I have been very clear that I think EVERYONE should have as many children as they can care for. In Ashley’s case, clearly, caring for Ashley became exponentially harder (both in terms of time and financial resources) once her siblings came into this world. Her parents specifically speak to paid caregivers as unaffordable and I can’t help but point out that affordability and time had to become a bigger issue once their care wasn’t limited to Ashley, a wholly dependent child.
And I think Ashley’s parents should have had sixteen more kids – as long as it didn’t come at the price of having to alter their mentally disabled child to alleviate the added burden of time and money.