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?
Ampersand writes:
“The difference, in my view, is that there’s a reasonable expectation that Ashley’s sister will someday be able to make medical decisions for herself, and insofar as it’s practical it is therefore preferable to put off making major medical decisions for her, thus preserving her ability to make those decisions herself someday.
(By the way, I’m not any more horrified by the prospect of cutting legs off, nor any less. )”
Ampersand, I thought removing healthy organs from our children wasn’t done, at least not without a life/death reason. And who is to say Ashley would ever want her breast tissue and uterus removed, sound mind or not?
But the question remains “how did removing Ashley’s uterus and breast tissue benefit her? And how was that benefit not extended to her “normal” sister? (I use quotes to spare myself the forthcoming requests to define “normal”)
As for your not being more or less horrified at the prospect of removing her legs, I agree – I’d be no more appaled by that. Removing an internal organ vs. a leg is equal. Neither are diseased, needs to be removed and the removal of either in a healthy state seems only supported by the convenience it yields her parents.
Jane, I don’t buy your argument about ‘If you wouldn’t do the same thing in this radically different situation, then you shouldn’t do it here.’
Circumstances matter.
I also find it sort of grating how you keep making reference to the parents doing this for their convenience and totally ignore Kimberly’s discussion of how her child has suffered a concrete harm. This is about Ashley’s quality of life, it’s not about her parents convenience.
Kimberly Anderson:
Repairing a visual deformity in a conscious, aware child is extremely critical for their sense of self and more positive experiences throughout their lives. Removing a uterus from a female child serves no purpose whatsoever. But please, enlighten me as to how Ashley benefits and, conversely, how her sister does not.
I have never heard of a female child, mentally disabled or otherwise, who has begun her menstrual cycle at under a year of age. But I’ll leave it open for you to provide some evidence for that. Having said that, how would that make a case for removing a uterus? You don’t address that.
As to my experiences, I think it’s funny how surprised we might all be by the lives and experiences of others on this vast network of anonymity. My experience with handicap is extensive and life-long, but irrelevant. After all, surgeons and ethecists inexperienced with handicapped children formulated opinions and voted for the “Ashley Treatment,” and you certainly didn’t question their ability to do so, based on personal inexperience. At least be consistent.
Furthermore, please note that parents of severely mentally handicapped children feel as I do and even more passionately. So don’t mistake disagreement with inexperience with this subject.
Healthy children do grow up and decide if they want children of their own. If Ashley’s inability to make that decision grants us the right to remove the necessary organs, why not remove the legs she will never use? Again, would that be equally acceptable?
As to your own plight, despite our clear disagreement, I do feel very sorry for your circumstances.
As parents, our first instinct is to protect our young. The next is to help them become independent, fulfilled, productive, contributing members of society. Our dream is never a child as Ashley. To say that caring for a child as her is heart-breaking and exhausting is probably a gross understatement that pales in comparison to the reality. And, unfortunately, the rewards are never grand or often enough to accomplish a sliver of what we’d hoped for them when they were but a twinkle in their daddy’s eyes.
If Ashley’s inability to make that decision grants us the right to remove the necessary organs, why not remove the legs she will never use? Again, would that be equally acceptable?
Well, first off, “us” don’t have any rights in the situation. Her parents have the right. You and I have the right to be nosy and run our mouths; we’re completely outside the decision loop, which is where we belong.
And to answer your question, if removing her legs would make a substantial contribution to her quality of life, then yes, that would be equally acceptable.
Myca, very sorry you find me “grating” simply because you disagree with my opinion.
And since you take exception to me not agreeing any of this was for Ashley’s “quality of life,” please illustrate to me how the removal of a uterus and breast tissue in a female child improves their quality of life. Or haven’t you bothered to read my own posts?
Granted, developing breasts and having a menstrual cycle can be irritating at times but so are teeth. Ever have a nasty toothache? Oh, gosh, ever stub your toe? I’ve writhed in pain, squeezing a “baby toe” more than a few times. But is the answer to have my teeth pulled? Is the answer to amputate my feet?
What you don’t seem to address here is that Ashley doesn’t need various organs and body parts based on the SAME EXACT PRINCIPLE used to remove her uterus and breast tissue. So why not yank her teeth out to avoid future dental infections? Why not amputate her legs so her weight is more manageable and her body easier to move around?
How do you pick and choose which body parts are “okay” for removal and which aren’t? If you don’t support removing her legs for “quality of life” improvement, how are her breasts less useful? For the purposes they’re intended, Ashley has use for neither.
I think it’s curious that the same people who support the Ashley Treatment would never support the amputation of her legs on the same principles. And I think I know why. It’s easier to ignore what was done to her when you cannot see it, when you need not bear witness to an atrocity – when you can simply feign ignorance. You can’t see her uterus and you just imagine her a very small breasted woman, as millions of others are naturally. But if you had to FACE the maiming of an innocent human being, if you had to look at what a scalpel did – you would feel uncomfortable. Then, you couldn’t agree with it.
I’m honest enough to say, stop right there! I cannot agree with needlessly lopping off body parts from mentally handicapped children because it makes their parents lives easier. And until someone can demonstrate how this has “improved” Ashley’s “quality of life” (including why her younger sister isn’t worthy of such “improvement”), I will remain firm that it was mutilation for the sake of convenience – and nothing else.
You, on the other hand, can rationalize an atrocity however you please.
Kathryn writes
“Here’s a thought experiment:
Imagine that another child has a similar mind- unchanged from that of an infant- but their body also has barely changed. Perhaps at age 14 this child’s body looks like that of a 4 year old.
Imagine now that a doctor comes to the parents and says “While we cannot change the child’s cognition, we can give a treatment which will quickly grow the body into puberty- within months their body will be just like any other 14 year olds, within a few years stopping at full adult size.”
Would you give this infant the body of an adult, because by the calendar the child ought to be going through puberty?”
Kathryn, no “thought experiment” need be done. This exists. People with Primordial Dwarfism experience just this reality – bodies smaller than toddlers with intellect that advances normally with age.
I don’t happen to find them repulsive in the least. Similarly I don’t find a grown woman with a mental disability disturbing. Why is the perception of handicapped people as physically whole entities so troublesome to some people?
Painfully telling is the earlier quote from George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, “The oestrogen 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.”
An ethics expert believes Ashley developing into a “full-grown and fertile woman” is grotesque.
I’m feeling quite a bit of that sentiment right here on this board, not outwardly voiced but clearly evident.
I actually thought about whether it would be okay to remove her legs when I was trying to form my initial opinion on the matter. I would want the same information about her legs as I would her uterus:
1) Does the procedure provide Ashley a substantial benefit which can not be acheived in another reasonable way?
2) Does the procedure’s benefit outweigh the pain and confusion of the procedure itself?
3) Does Ashley herself, not an abstract of Ashley, gain pleasures that would be abbregated by the procedure?
4) Are there detriments to the procedure which have not been listed, and what are they?
Without knowing everything about the situation, Without knowing more about the situation, I couldn’t know the answers to these questions. But based on guesswork, I’d believe the test fails, mostly because I’d assume Ashley knows she has legs. (also because of phantom pain, the pleasure of flailing assuming she can flail, etc.)
**
Personally, I find myself mostly persuaded by Ballastexistenz’s remark that medical diagnostics are not currently good enough to guarantee that Ashley is as infant-like as has been assumed. I’d want more information, but if misdiagnosis is a rare but not unheard of problem (on the level of lightning strikes or more common, but not on the level of virgin births), then certainly I would prefer to extend the benefit of the doubt.
Jane
If a child like Ashley is born with a clif lip and looks disfigured would you be upset because her parents allowed three opperations to make her look ‘normal’ ?
Of course not, cosmetics is looked at as a blessing. Why ? Who does it benefit ?
Not the child, she didn’t know she looked awful to begin with. I’m not compairing the two proceedures but the point. Who are YOU to decide what is and what is NOT okay for someone ealse’s child?
Again you miss quote me , I didn’t say on an aware child ….
Removing a uterus from a female child serves no purpose whatsoever. But please, enlighten me as to how Ashley benefits and, conversely, how her sister does not.
If I must enlighten you …..
Do you know the statis of Ashley’s seizure control?
Are you saying her ‘normal’ (as if Ashley is abnormal) sister has seizures???
I wasn’t aware. However some children suffer a dangerous spike in seizure activity dureing their menstral cycle. So some believe that removing the uterus
there by eliminating menstration would serve a wonderful purpose.
Now if her ‘normal’ sister wants hers removed to stop the seizures she doesn’t have then I guess that poor child will need years of theropy because her parents deprived her attention growing up.
I do know of an 18 month old whom started menstration, Her parents chose Depo to stop her cycle. Should they get your written concent or would you like to pick apart their rights to make medical decisions for their minor child too?
My consistancy remains with the parents NOT the ethics commity or board. I feel parents have the right to make medical decision for their minor children as long as it’s not endangering or shortening their life. I don’t believe you or I should have the right to belittle them for it.
Furthermore, please note that parents of severely mentally handicapped children feel as I do and even more passionately. So don’t mistake disagreement with inexperience with this subject.
I haven’t mistaken anything really, I don’t question your expirence but the manor in which you represent yourself. Most parents I know who have severly dissabled children are aware or others feelings and wouldn’t want to intentionally be rude or hurtful to prove a point. You seem to me like aprofessional of some sort all the knowledge without that pesky touchy feely stuff. But I’ve been wrong befor.
As for removing her legs, are her arterys clogged ? Does she have gangreen? (spelling?) That’s a little over the top and kinda goes with what I was saying above.
I can’t imagine people feeling bad for me. My life is hard, isn’t yours ? My daughter gave me a gift most mothers (people) never get. I can’t explain it, My other children are appreciated so much more because I know the truth. I know that it doesn’t matter boy/girl, blond/brunett, blue/green eyes. Who cares…
Walking, talking, seeing, eating, these things are what it’s all about.
Everybody has a tough life, it’s how you deal with it that matters.
And if you can find a legal, safe, and acceptable way to make it better for yourself or your family then go for it. You deserve it. And IMO so do Ashley and her parents.
My understanding of cleft palate surgery is that it repairs a malformation in the mouth that prevents babies from forming suction so they can nurse. Many die of starvation without this.
Kimberly,
Removing Ashley’s legs is NOT over-the-top. See, you just don’t get it, do you? It’s equally radical. Ashley doesn’t need her healthy uterus any more than she needs her healthy legs. A “quality of life” case can be made for the removal of either.
You continue to raise the cleft lip topic, then quickly disclaim that it’s not a comparison. Why raise it? But since you have….no, I don’t think that fixing a cleft lip (and palate as others have raised – they’re usually both deformed simultaneously) – even from a child such as Ashley – is inhumane. For starters, the procedure yields functional benefits as well as cosmetic.
As for me being rude and hurtful, I sure don’t intend on that and can’t see how my opinion of what Ashley’s parents have done to her can possibly hurt you. Then again, perhaps removing body parts from your own child is on your agenda, which would explain why you’re taking my opinion so personally. Otherwise, you shouldn’t.
Ironically, I believe I’m a champion of the underdog – the person who cannot speak for themselves. I sure don’t like people (even “loving” parents) turning a mentally disabled child into a miniature puppet, devoid of sexual organs, under the guise that it would make her more comfortable. Ashley’s parents have a conflict of interest, given what they claim would be better for Ashley just happens to make their own lives a whole lot easier and more comfortable to deal with.
But I must admit this is all quite personal to me as well. You see Kimberly I, too, may find myself in a nursing home, the victim of a car accident that renders me in a permanent vegetative state, or suffering from Alzheimer’s in my old age. And I’d like to keep all of my healthy organs and limbs while I’m alive.
And, finally, I’d hope I’m not the first person to bring this to your attention but yes, Ashley is abnormal.
*round of applause*
And sorry Kimberley, but if I was a child with an intellectual disability I would rather have Jane as a parent than have you (and Robert) as parents. Good grief.
I have two children with disabilities and I work with people with disabilities in the course of my job. What you are missing, entirely, is that Ashley has *rights*. You can’t believe in human rights and then say ‘oh, except if they have an intellectual disability’ – thats fubar. If you believe in human rights (and perhaps you don’t) you have to believe in rights for all people.
If you don’t understand the concept of basic human rights, google it. Human rights are those basic standards without which people cannot live in dignity. To violate someone’s human rights is to treat that person as though she or he were not a human being. To advocate human rights is to demand that the human dignity of all people be respected.
It is not okay to cut off, or out, healthy body parts. I’m sorry, Robert – you are wrong. Her parents do not have the right to do what they have done. Legally, they apparently do – but within the definition of human rights, and morally, they do not. It is abhorrent and a gross violation of Ashley’s rights as a human being that they would choose to butcher her for the reasons they have cited.
Kimberley, I am hearing what you are writing, but you are wrong, honey. When you wrote this, ‘And I’m at the point who cares if it helps the child and the parent. Don’t they deserve a break here and there ? …
I started to wonder huh, how will I know if my daughter’s apendix is bad ?
She can’t vomit, (due to aspiration) she can’t tell me were it hurts, all I’ll have to go on is crying and a fever (wich will bring seizures) She does that with ear infections and simple colds. I most likely won’t know till it’s too late. That’s scary ! ‘ its a pretty clear indicator of your motivations for writing what you have.
You’re exactly right. It is scary and it is dangerous and it is not any situation that a mother would want to be in. Having a child with a disability can be a thankless, miserable experience on occasion (and sometimes can be the most rewarding experience in the world). The rewards are greater because of how awful the situation often is.
Her parents ‘do deserve a break here and there’. They can access respite services or ask for help from family and friends. What they do not deserve is a break at the expense of the basic human rights of their daughter Ashley, who does not have a voice.
‘And I’m at the point who cares if it helps the child and the parent.’ Have you got to that point out of sheer frustration, tiredness and terror at the prospects of the future for your child and yourself – or from rational reasoning? You know who should care? Everyone. Not just everyone who is disabled, or everyone who has a child with a disability. Not just people with children. Everyone should care.
Why does it matter? Because the medical profession, by agreeing to carry out this atrocity, are tacitly giving their approval to the abolition of human rights for people with disabilities. Because the parents are advocating this injustice as being a valid ‘treatment’ for other children (to alleviate their own guilt? to validate what they have done?) And because if it were to be approved across the board, your child could be removed from your care, or you could die, or another child in your child’s situation could be faced with the prospect of having their own human rights abolished.
By the by, the issue you raise about menstruation in children is not really valid. Any such occurence would be because of a serious hormonal imbalance which would be (and apparently was remedied by your friend) remedied by medical treatment. That is because something has *gone wrong*, and they fixed it. See the difference? We are talking about so called preventative surgery which does not really have any valid basis, on a human who is unable to speak for herself. Where does that stop? Do the parents have the right to kill her? That, too, would ‘alleviate her pain’. And as Jane says, the discussion about removing her legs is equally valid to removing an equally healthy body part, her uterus. There is nothing wrong with her uterus – it does not have gangrene nor do the parents have any medical evidence (genetic testing as opposed to ‘family history of’) that the uterus will become cancerous or diseased.
Legal, safe, acceptable – I have an issue with one of those words, the last one. Acceptable it might be to you, and to Ashley’s parents, and perhaps to Robert. But how do you know that it is acceptable to the most important person in this scenario – Ashley?
Sam-thanks for the link from yesterday- though in regards to your post on 1/15 directed towards me and my comment (i.e. “Families can chop…) I’m not sure what part of my blogs you are referring to. Am I missing something???
Sam,
Love your post. What some may not understand here is that I myself don’t take THIS personally, I don’t have a ‘need’ for the services. But maybe a few years ago I would have jumped at the chance to stop my child’s growth. I am at a point were my daughter is grown, I already need home health care to help me. However I feel her life would of benefitted if , at some point I could of stunted her growth.
My concern is more with when do parents loose their right to make decisions for THEIR child. You say Ashley has human rights, when do you see her interjecting ? Next week, a year, ten years maybe ?? I don’t know her seizure control I don’t know what her endo and neuro have told her parents.
I know what mine have said about puberty and it’s not pretty. My daughter has a chance of dying when it happens. This is a chance I need to take. Depo was offered but I myself had horrific reactions to this drug and chose NOT to take that risk with my child. Should I loose my right to make that choice because she has human rights ? I was once told that her pre puberty could be caused by a tumor in a part of her brain that is inoperable and if I should choose not to do something about it custody could be taken from me and they could prosue it on there own.
So parents are wrong for doing too much, parents are wrong for doing nothing or too little. Who gets to pick and choose ?
I had a board meeting at her school tonight. They wanted to drop music and art and a few pool attendent. Well quite frankly if these services aren’t offered then why in the hell do I have to send her ?!? Because the school board says so.
I will be charged with tuency and she will be ward to the state for not attending a school that offers her NOTHING. She can’t walk, talk, see, or eat. She LOVES music and the pool. I can get PT and OT at home. However I don’t play the guitar (she loves her mp3 player) or have a pool so I need the school for her.
To me it’s not about this specific proceedure alone it’s more on why do we feel we know better for a child we don’t care for on a 24 hour basis. Who are we to decide they are selfish and did it only for the few benefits that they get out of it. I mean really she’s not that small they aren’t keeping her from having children and making her stay 2 foot and 20 pounds forever.
Sam, thanks for the support (I’ve not gotten much!) ;-)
I think, sadly, Kimberly’s opinion is tainted by the excruciating difficulty of caring for a seriously disabled child. And, look, I can absolutely sympathize with the seemingly insurmountable obstacles the parents of disabled children face every single day, without rest, without fail and with little – if any – help. That’s a reality that’s even more pressing than human rights, no doubt. And much, so much, needs to be done in our society to provide for our disabled citizens. (with the oldest of the baby boomers hitting retirement age, I think we’re going to witness a terrible infrastructure that will harm the lives of millions)
Having said all of that, I can’t help but be so profoundly troubled by the motivations of Ashley’s parents and by their very words.
Ashley’s father describes this having been “an easy decision.” Sam, I assure you that even removing a cancer-ridden uterus from a child is an excruciating decision to have to make. No parent would define it as “easy” – and that’s to save the child’s life.
Our children are human beings, first and foremost – quite distinctly apart from us.
To Ashley’s parents: (should they ever read this thread)
There are actually loving human beings who willingly adopt special needs children with no intention whatsoever on mutilating them for convenience. That simply isn’t an option they’d consider. Making a commitment to Ashley shouldn’t have been contingent upon her weight or normal bodily functions. Perhaps if you put half the energy into a more comfortable home for Ashley that you did in having to convince a panel of physicians, ethicists and lawyers to perform a very controversial treatment – you may have yielded better results.
Finally, if life with a disabled child was so challenging (and I have no doubt it is), you willingly and knowingly compounded those challenges by introducing two more children into your household. Doing so immediately shifted time and financial resources away from the child that needed the most. And, ultimately, you didn’t ask the family to make life easier for Ashley, rather you forced Ashley’s mutilation and physical contortion to form a neater package for you. What more do you take from her if you find yourself with less time, less resources?
Pillow Angel Ethics
The controversy is raging. A large storm is brewing. Those involved with medical ethics and disability rights are taking up the hue and cry over Ashley’s parents controversial decision to medically stunt the grown of their severely handicapped daughter. Time’s issue is just a drop in the bucket. The blogging sites are rife with the controversy.
There is a huge problem. Those who condemn Ashley’s parents haven’t been “there”. They have no idea what parents of handicapped children, every where, have to face, day in and day out with little help and respite. Unfortunately, the needs of the most severely handicapped are unimaginable to any one; except to those of us who have been there, assisting and taking care of the many daily needs of those who are incapable of taking care of themselves.
Taking care of a 20 year old severely disabled young girl who weighs 40 pounds is not as taxing as taking care of a 22 year old severely disable young man who weighs over 200 pounds and needs a special hoist and gurney to meet his needs. The young girl takes about 5 minutes to change her diaper. The young man takes about 20-30 minutes to take care of his diapering needs. The young girl eats specially prepared foods and the young man “eats” with the help of a feeding tube.
Many parents of the severely handicapped take care of their children as long as they are able; sometimes into their late 60’s and 70’s. Sometimes they get respite care – if there are available funds and caring individuals to help. Sometimes extended families will help. Sooner or later, these parents will have to give up custody of their child – to the government. Caring for a disabled person is a tough job; and one that no one appreciates.
Now, as to the various medical procedures that were performed on Ashley….. I’m sure that her parents were very much aware of what they were looking at as Ashley approached her teen years. Quite possibly, they observed other severely handicapped children in Ashley’s school who were going through those difficult years of developmental / hormonal changes. So, did they make the “correct” choice? In their minds, they did what they thought had to be done. I have witnessed other parents agonizing over similar decisions. A decision is made to spare a child of the consequential pain, suffering and confusion that would otherwise happen. (The only disagreement that I have is the removal of Ashley’s breasts. Possibly, the hysterectomy would slow down breast development. For many of my severe female students, this was not a problem. Most were “naturally” flat — which is best for wheel chair support-restraints which do put pressure on this area and which is especially bad for those with very extensive – postures.)
Should you have a “need to know”, have the time and are of the “Good Samaritan” type, please report to the nearest school, nursing home, or respite care facility and volunteer. Care givers are always needed. Our severely handicapped children need your loving care. Most will let you know that you are appreciated – with a smile. Some will not, because they can’t. You may even get to understand what it is like for those who live in a world of pain, without end or hope or even of understanding and being understood…..
Will Stamps
Utah Certified Special Education Teacher
Multiple and Severely Handicapped
(And, uncle of a severely handicapped & responsive 27 year old young woman)
ps
I’ve glanced at Karen Anderson’s writings. For the most part, she is pretty much “on” top of things and has a grasp of the issues. However, every one has an opinion. And, in this “game”, it is really the opinion of the parents that really matters. Hopefully, they are aware of the other options available.
“My concern is more with when do parents loose their right to make decisions for THEIR child.”
Every human is a distinct entity from their parents. “THEIR child” does not equal THEIR property. Our children are entrusted to us until they reach an age our society has agreed is minimally sufficient to be emancipated. We are not free to do whatever we think best for them until that time regardless of outcome. There are conditions, and eviscerating them of healthy organs is one of them.
Apparently, the same doesn’t hold true for mentally handicapped individuals. And as the parent of one such person, you ought to be far more concerned at the precedent this sets than I am. Protecting the inalienable human rights of your daughter may serve her well long after you’re not able to.
Something’s really rotten in the state of Denmark (or Seattle, WA)!
Sam wrote:
How do you know that not being carried by her parents as often will be acceptable to Ashley?
How do you know that having to spend more time in a wheelchair (currently being in wheelchairs makes her cry) will be acceptable to Ashley?
How do you know that having menstruation will be acceptable to Ashley?
Jane, do you understand that not all mentally disabled people are identical? To talk about “mentally handicapped” as a category here, as if all mentally disabled people are alike, is not useful.
Some people will be able to participate in making their own essential life decisions. Some will not. That distinction — between those who can be expected to someday participate in making their own life decisions, versus those whose decisions will always have to be made by caretakers — is the meaningful one for discussing Ashley’s case. And Ashley falls into the latter category; in all likelihood, she will never be able to meaningfully participate in making her own life decisions.
So your comments — based on the idea that “children are entrusted to us until they reach an age our society has agreed is minimally sufficient to be emancipated” — are not very applicable to Ashley’s case. Ashley will, in all probability, never be able to be emancipated.
I never stated she doesn’t deserve rights, she can not and will not ever be able to express her wants to the national public. There for the next best person or persons to exicute things for her would be har care takers. What is it with you people ?
Are you trying to tell me that you know what my daughter wants and needs more than I do. Of course not it’s impossible, I eat, sleep, and breath for my child. I know her favorite things to hear and do. Why because she whispers it to me over breakfast? No but because I live for her. I’m fighting for her rights everyday at her school. I’m fighting for her everyday when medicaid says “no that equipment isn’t needed” Do you know that one bean bag chair specialy made for a person with skin breakdown is $15oo.oo It’s insaine. I’m waiting for the denial letter now.
Then I have to file with DDD then ARC then the katastrophic injury commitee. But do I ever think theese people will approve it …. NO
Because when it comes down to it “it’s just a bean bag chair.” But to my daughter it’s so much more. People don’t get that.
I look at Ashley’s parents like they are me. I get what they did. I get why they did it. My daughter has need that can’t be met because she is getting too big. She has wants that I can’t handle because others ‘know better’ .
And lastly they know what her doctors warned would happen ounce she hit puberty.
Ashley has rights, but sadly she can’t express her wants, isn’t it possible her parents are doing it for her?
Ampersand,
I agree that Ashley’s mental deficiency is such that she will likely never contribute to her care and wishes in any meaningful way.
And, still, she remains a human being. She really does have basic human rights (very much as Sam has covered). The inability of a human being to make decisions for themselves doesn’t automatically grant their parents carte blanche to do whatever wish, as even the most “loving” parents in the world can have some ideas that are rather terrifying as to what constitutes wellness for their child.
And simply because Ashley cannot say menstruation is something she would want, shouldn’t give her parents the right to decide she wouldn’t. The default position, I would have hoped, would be that Ashley would want her body as intact as anyone else’s given all of her choices. And deviating from such basic human normalcy should come only in cases separating life and death.
Under the principles you establish, it would seem fit that parents of children in Ashley’s condition may remove any and all healthy body parts they deem appropriate for their own justifications.
When caregivers are entrusted with mutilation, it’s not going to be a very long leap before you find the same happening in nursing home facilities all around the country – not only to the elderly, but to the thousands of patients in PVS. And you’re saying that’s okay because caregivers know best. I’m saying no one should have the right to remove your natural healthy organs on their assumption that you’d be more “comfortable” without them.
Again, and I can’t stress this enough: We all want our children born with normal bodies and minds. When that fails, we work hard to provide them with an existence as close to that normalcy that we can. In Ashley’s case, that’s been turned upside down.
Kimberly,
Your endless descriptions of puberty remind me of the movie Carrie and her mother’s character in the film. Such terror! Puberty is something we’ve all been through and trust me on this one – IT’S COMPLETELY NATURAL AND HEALTHY. Our bodies have gone through millions of years of evolution. I think that kind of history might have produced a more finely tuned specimen than you give our bodies credit for. And frankly, I don’t remember anyone going insane with seizures and attacks from puberty (which includes the class of mentally challenged kids in my high school at the time). Maybe we were all more emotional or restless and our pimpled faces might have looked a little worse for the wear but it did pass and our organs needn’t be removed.
If your child developed an extreme hormonal imbalance, then that was her misfortune (and yours) but you really don’t need to assume that on all disabled children without substantiation.
I think you extend all parents a whole lot of freedom to do whatever they wish with their children and I am very very careful to tread that ground. Perhaps Ashley’s parents could have….gee…I dunno, maybe….umm….WAITED to see how Ashley responded to puberty before deciding to take such radical defensive action?!
Kimberly, Ashley may develop tinnitus some day. I personally know of 2 women with that awful, maddening condition. I’ve since learned it’s not all that uncommon. If Ashley’s severe disability warrants her parents to initiate pre-emptive strikes against anything that may one-day trouble Ashley, why not remove her ear drums now so tinnitus won’t strike? Or, why not remove…..
You get where this is going, right? That, at the very least, removing PERFECTLY HEALTHY body parts cannot be sanctioned. And the removal of body parts – yes, even for the handicapped children you seem to deem less worthy than healthy children – should ONLY be performed when life and limb are at stake.
I really feel as though an uncomfortable amount of people wouldn’t mind chopping Ashley down into a genderless torso with a hook in her back so she can go hiking with the family and be mounted on the wall over the fireplace when they’re watching a movie.
C’mon folks! She’s a human being!
Will,
I think you’ll agree there are professionals (such as yourself) and parents of children as severely handicapped as Ashley who are enraged over the “Ashley Treatment.” In fact, disabled citizens have come out strong against this and are enraged.
It probably doesn’t mean much, however. There are many points of view that are distributed amongst us all, even those most intimately affected.
My message remains that invasive procedures involving the removal of natural, healthy organs of ANY human being is unconscionable. And you have gone into great description detailing the TRUTH about why the Ashley Treatment was done – for the convenience of Ashley’s parents and nothing else.
If, as a by-product, their convenience was also good for Ashley, then that is called indirect benefit. As I’ve mentioned previously, Ashley’s parents might have considered their lives full enough with a mentally handicapped child, given the inherent drain of time and expense, and not increased their family. Doing so created a far more desperate situation and the Ashley Treatment was created. And whose organs were removed? Ashley’s.
Jane and Sam,
Thanks for such clear and conceise arguments. I’m so enraged and dumbfounded over the responses of people who purport to be progressive and defenders of human rights that I myself am unable to argue. It’s truly maddening, and every time I think I’ve calmed down enough to make a point I read some more that upsets me all over again. So, I just wanted to say that although I am unable to coherently argue with you, I am reading and clapping for your posts.
To those that say that people without disabled children just don’t know, well go read dreammom and see what she has to say.
You really are a piece of work, Jane Hill, to question Ashley’s parents’ decision to have other children. A true piece of work.
Puberty is something we’ve all been through and trust me on this one – IT’S COMPLETELY NATURAL AND HEALTHY. Our bodies have gone through millions of years of evolution. I think that kind of history might have produced a more finely tuned specimen than you give our bodies credit for.
I wasn’t aware that all people who hit puberty run the risk of uncontrolled seizures. Forgive my ignorance.
You want to make this a human rights issue, then find someone whom had this treatment done and is pissed about it. Fight for them. Go find a woman who uterus was removed without consent and wants vindication.
This case is about a child who has no way to express her own wants or needs so her parents out of love and compassion (not gross boredom or curiosity) made these choices for her. It’s done everyday, by millions of parents on different levels and in different ways. Some children on life support are being unplugged today while others are going to be kept alive another day.
Do we slash the parents who unplugged saying they are heartless for giving up ?
Or do we pick at the parent unable to let go because they are selfish ? Parents make hard, heartbreaking desicions every day, without their mino child’s consent. They do it by wondering …. “what would MY child want?” Some would want one thing some the other, everyone is different. In my family everyone wants something different. (we lernt this after the Terri Schiavo fiasco)
I still believe if Ashley’s parents did this they did it because they feel it benefits Ashley. Go figure they indirectly benefited. You can spin that belief both ways.
Jane, Ashley’s parents have lives beyond Ashley and a right to try for a healthy, functional child. Whatever moral obligation her parents have to her, they should not have to forfeit their right to future offspring.
I think the actions taken in the Ashley case benefit the involved more than they harm them (including most particularly Ashley), but I’m very concerned about it all the same. It has brought the option of surgical alteration to the attention of home caregivers, including those whose charges are less incapacitated than Ashley, but no more able to protect themselves.
Interestingly enough, the Roman Catholic Church, of whom I am no defender, has always forbidden any sort of surgical intervention which is not intended to benefit the health of the patient. Directly. Not the convenience of other people.
Under the conventional teaching of that Church, then, this whole business was wrong, and no further analysis would be necessary.
From any point of view, this is a very disturbing case. Perhaps the most disturbing thing about it is the father’s professed lack of internal conflict around this decision. It was “easy” according to him. Ashley’s parents are not, as many have asserted, off limits to legitimate criticism merely because they found themselves in a difficult position.
CJ wrote:
“Jane, Ashley’s parents have lives beyond Ashley and a right to try for a healthy, functional child. Whatever moral obligation her parents have to her, they should not have to forfeit their right to future offspring.”
Quote from Ashley’s parents: “We tried hard and found it impossible to find . . . affordable care providers.”
CJ, I couldn’t agree more with your statement. I certainly do not begrudge any parent the right to future offspring simply because their former child is severely handicapped. Rather, I am stating the obvious. Future offspring drain parents of time and finances; I don’t believe this is a debatable point. And if adding future offspring is done so at the expense of having to mold the handicapped child into a more convenient package by removing healthy organs and stunting her growth, then the price paid for that future offspring is far too extreme because it is, tragically, paid solely by the handicapped child.
And I think you’re right to concern yourself with the implication this atrocity will have. The health care system is overburdened as it is and our government has proven it will find an easy, cheaper fix at the expense of human violation. This is a patent example of just such a thing. Healthy organs in Ashley’s body were removed for convenience and nothing more. Certainly, not even Ashley’s parents have made any case of benefit to Ashley, rather a bunch of assumptions and suggestions of what may happen in the future and that, if so, would discomfort Ashley.
I’ve noted this prior but to remove Ashley’s uterus and breast tissue because she may or may not experience menstrual cramps and she may or may not develop large, uncomfortable breasts and she may or may not develop uterine or breast cancer, well, that’s just awful (to say nothing of suggesting Ashley has a better chance of being raped by having breasts – as if children aren’t raped all too frequently in our world).
It was touted as a pre-emptive strike against the body of a child that may likely have been equally comfortable with all of her natural healthy organs just as they were.
Pandora’s box is wide open – what organ will go next?
Jane, if you really want to spend time demonizing people who disagree with you as monsters who don’t care about Ashley’s well-being or humanity, you need to keep in mind that this can cut both ways.
Or, to put it another way: Why don’t you care how much this girl suffers? Why don’t you care how much pain she goes through? Why don’t you care how much she cries because her parents can’t hold her when she grows too large to be carried? Why aren’t you paying any attention to her quality of life issues?
Why is her uterus more important to her than she is?
Why do you want her to suffer?
Look, I’m willing to listen to your arguments . . . and I think everyone who disagrees with you is . . . but the people who disagree with you are not evil or denegrating Ashley’s humanity or or focused on the convenience of Ashley’s parents. They’re focused on Ashley’s quality of life.
I don’t think you’re inhuman for holding an opposing opinion on the best course of action here. Please return the favor.
Kimberly,
If you could somehow detach your personal circumstances from my words, I think you might find that my message is far more peaceful, accepting and caring than a superficial glance.
1) I am not against the removal of life support devices and it does break my heart to imagine the sheer agony parents must face in doing so. I don’t even know how they recover, yet sometimes that decision must be made.
2) I don’t begrudge Ashley’s parents from moving on in their lives and from building a bigger family. In fact, bravo! But not at the expense of their handicapped daughter – the one who can’t complain. And unreal as it may seem to you, there are many loving couples waiting to adopt special needs children with no plans to chop them into manageable luggage. That is a preferable option.
3) The forced sterilization of mentally handicapped individuals has been done before. I’m certain a great many victims of this never understood what was done. But does someone’s inability to grasp the indignity done to them grant us license to do it? Ashley will never understand what was done, true. She also won’t understand being paraded outisde in the nude with words like “freak” drawn on her body. Does that mean you don’t violate her dignity to do such a thing?
It isn’t about what she understands; it’s about what we as a civilized, humane society understand and what we’ll accept.
An indignity is recognized by the act, not by whom it is done to.
Myca,
I’m sure it is you, not I, who has used the word “evil,” so please don’t attribute that to me.
If you read the blog of Ashley’s parents, I think you’ll find that her quality of life was fine prior to the “Ashley Treatment.” So I’m not sure what quality of life issues you believe I am unwilling to consider that needed alleviating in this child. (Have you even bothered to read what I’ve written?)
The reasons her parents gave for the “Ashley Treatment” were all based on future assumptions and predictions, not on any then-current issues Ashley was having.
But I’m open to being wrong. Perhaps you can find where they mention Ashley having unmanageable pain by her uterus or developing breasts? Or you might show me where her growth was causing Ashley pain. I welcome that information, truly.
Lastly, neither Ashley’s uterus nor any other organ of hers is more important than she is. We agree. (and, still, that shouldn’t sanction the removal of her healthy organs)
Regarding Ashley’s treatment, Sandy Collington, mother of a girl with cerebral palsy, said, “All parents face difficult decisions for their children, whether disabled or non-disabled but the idea that we should prevent our children from developing into adults is appalling.”
Wow, thanks for completely ignoring my point, Jane.
Just keep on attributing malice to the people who disagree with you, and we’ll be certain to do the same back, and then we’ll all yell at one another, and that will be totally enlightening.
Myca,
Please tell me, did you have a question I did not answer? What point did I ignore?
As for attributing malice to those who disagree? It is you who used words like “evil” and “monsters,” I sure didn’t.
I think the only other point was what you wrote below:
“Why don’t you care how much this girl suffers? Why don’t you care how much pain she goes through? Why don’t you care how much she cries because her parents can’t hold her when she grows too large to be carried? Why aren’t you paying any attention to her quality of life issues?”
And I addressed that. There is no mention from Ashley’s parents that she EVER suffered from uterine, breast or growing pains. Yet they removed her organs on the off chance that she might one day find discomfort in those organs. Now you can say that’s a very rational approach and I will say that it’s barbaric. We simply disagree. I would rather take a wait-and-see approach over prematurely and needlessly removing healthy organs on the irrational fear of what may happen.
As for “yelling” at one another, I should hope not.
No, no, no, no, no. My point was not that you don’t care about Ashley, my point was that if your opponents wanted to paint you as someone who denies Ashley’s humanity (as you have done to those of us who disagree with you), we easily could.
I don’t think that that benefits anyone. I don’t think that demonizing your opponents benefits anyone. I don’t think that taking a discussion on what’s best for Ashley and trying to make it about what’s conveinient for Ashley’s parents benefits anyone. I think it’s a red herring.
“I don’t begrudge Ashley’s parents from moving on in their lives and from building a bigger family. In fact, bravo! But not at the expense of their handicapped daughter – the one who can’t complain. ”
The two other children (Ashley’s siblings) have nothing to do with anything. Whether the parents had no other children or twelve other children – they’re still going to be unable to lift, carry and turn her as she gets bigger. The existence of the siblings is a huge and irrelevant straw man, and it just makes you look as though you’re hoping to swing at the parents and hit anything that is remotedly near them. It doesn’t help your argument at all.
“And unreal as it may seem to you, there are many loving couples waiting to adopt special needs children with no plans to chop them into manageable luggage. That is a preferable option.”
Big deal. Unless there’s a race of super-giants being created that I know nothing about, any other caregiver of normal height/weight/stature isn’t going to be any more able to lift and carry her than are Ashley’s parents. The issue of not being able to be moved, and the bedsores and infections and ill-being as a result, applies to anyone who grows to adult size and is incapacitated, regardless of whether they’re cared for by their families at home or by staff at a group home.
Personally, the discomforts of menstruation to me, a grown woman, are slight and not cumbersome in the least. But that doesn’t give me the right to project that therefore they’d be slight and not cumbersome to someone who doesn’t have the ability to even understand / comprehend the discomfort. And what would be a little bit of discomfort to ME could easily be of great discomfort and angst to someone who doesn’t know any differently. The appalling lack of kindness and “desire” to have her experience menstruation “just cause it’s natural” is unbelievable. Should we also put food in her mouth because that’s the natural way of eating, even though she’d choke and aspirate it?
BTW, why aren’t you worked up over the “lack of dignity” of her parents forcing her to have a feeding tube (and the surgery to insert it) without her permission?
And of COURSE she’s human. That’s not up for debate in the least, IMO.
Legal, safe, acceptable – I have an issue with one of those words, the last one. Acceptable it might be to you, and to Ashley’s parents, and perhaps to Robert. But how do you know that it is acceptable to the most important person in this scenario – Ashley? ”
You don’t. You also don’t know whether being on a feeding tube is acceptable to her either, but I don’t see anyone raising hell when parents with an incapacitated daughter consent to surgery for a feeding tube. You don’t know at all what’s acceptable to her, but I daresay that Ashley’s parents – the ones who have spent the last 9 years of their life taking care of her, and by all accounts doing a masterful job – probably have just a tidge more insight into what she might want than you? And if they say that she would value being held / carried, which she gets pleasure from, more so than the abstraction of having an extra foot in height and a uterus, then I think it’s completely reasonable.
“And I addressed that. There is no mention from Ashley’s parents that she EVER suffered from uterine, breast or growing pains. Yet they removed her organs on the off chance that she might one day find discomfort in those organs. ”
Well, actually, removing them is extremely prudent medically in the light of the high-dose estrogen therapy that she’s receiving for the growth attenuation. The growth attenuation is driving the rest of the medical decisions, which keeps getting ignored in the discussion. It’s too bad that people with agendas have re-cast this as “they wanted to remove her uterus and breasts because periods are icky and she won’t be a tease!”
“If the convenience of Ashley’s parents to carry, transfer, snuggle her is impeded by her increasing weight, would you support removing the legs from a 16 year old in Ashley’s condition for the same benefits? Honestly, think about that long and hard. Because if you would not support removing legs that will never work and legs that make mobility much more difficult for the family, as yourself how removing a uterus and breast tissue was more necessary. I would be very interested to understand your moral repugnancy for one over the other.”
It’s not an issue of moral repugnancy, it’s an issue of practicality. The surgery to remove legs is many times more complicated than the surgery to remove a uterus. The possibilities of phantom pain and infection at the amputation sites are much greater. No one has phantom-uterus pain, whereas amputees suffer from phantom-limb pain for years. You simply can’t compare the two as side-by-side options and demand that they be thought of equally and think that there’s a “gotcha”.
“As I’ve mentioned previously, Ashley’s parents might have considered their lives full enough with a mentally handicapped child, given the inherent drain of time and expense, and not increased their family. Doing so created a far more desperate situation and the Ashley Treatment was created. ”
Did each birth of a successive sibling take away height/physical strength from the parents or something? I’m afraid your argument doesn’t make any sense.
3) The forced sterilization of mentally handicapped individuals has been done before. I’m certain a great many victims of this never understood what was done. But does someone’s inability to grasp the indignity done to them grant us license to do it? Ashley will never understand what was done, true. She also won’t understand being paraded outisde in the nude with words like “freak” drawn on her body. Does that mean you don’t violate her dignity to do such a thing?”
If, HEAVEN FORBID of course, Ashley had been raped in a nursing home and became pregnant, does that also mean that you would not support her parents getting her an abortion because she could not consent to an abortion? Would you be arguing that she should bring the baby to term because, after all, that’s what’s natural? Because if so, there’s really nothing more to say.
When caregivers are entrusted with mutilation, it’s not going to be a very long leap before you find the same happening in nursing home facilities all around the country – not only to the elderly, but to the thousands of patients in PVS. And you’re saying that’s okay because caregivers know best. ”
Sure. Caregivers can put D-N-R orders on their loved one’s bedsides too, or request that feeding tubes be pulled, and it’s all ok with me. In fact, my living will specifically requests that my caregivers and loved ones do so under specific circumstances. Why, is there a problem with that?
Suzanne:
“The two other children (Ashley’s siblings) have nothing to do with anything. Whether the parents had no other children or twelve other children – they’re still going to be unable to lift, carry and turn her as she gets bigger.”
– I’ve really tried to be delicate about this but then, unfortunately, my point is either ignored or missed altogether. Put bluntly, the finances of a household are not limitless. Adding more children only exacerbates that reality. And that’s fine when the implication is that little Susie has to give up piano or dance after a brother joined the family and he takes guitar lessons. But if adding siblings for Susie means homecare for her is now unaffordable and stunting her growth seems the only way to manage this growing helpless child….well, then that would be a tragic statement indeed. (and quite avoidable)
“Unless there’s a race of super-giants being created that I know nothing about, any other caregiver of normal height/weight/stature isn’t going to be any more able to lift and carry her than are Ashley’s parents.”
– But most loving parents accept that they need to accommodate life for their special needs child, not alter the child’s body the way one would with a car.
“the discomforts of menstruation to me, a grown woman, are slight and not cumbersome in the least. But that doesn’t give me the right to project that therefore they’d be slight and not cumbersome to someone who doesn’t have the ability to even understand / comprehend the discomfort.”
-You’re exactly right Suzanne, which is my point – only in the reverse. The removal of her uterus was done because her parents believed they had a right to project what her experiences of menstruation would be. Ashley lost an organ from that projection.
“why aren’t you worked up over the “lack of dignity” of her parents forcing her to have a feeding tube (and the surgery to insert it) without her permission?”
– Because a feeding tube is life and death. In kind, no one would object to removing Ashley’s organs or limbs if they were cancerous. Parents choose to put their children through chemotherapy and related surgeries all the time. That’s done to save a child’s life – and I sure hope you understand the distinction.
“Well, actually, removing them is extremely prudent medically in the light of the high-dose estrogen therapy that she’s receiving for the growth attenuation. The growth attenuation is driving the rest of the medical decisions, which keeps getting ignored in the discussion. It’s too bad that people with agendas have re-cast this as “they wanted to remove her uterus and breasts because periods are icky and she won’t be a tease!”
– If what you’re saying is that Ashley is more susceptible to gynecologic problems as a result of the high-dose estrogen therapy, then all the more tragic to have opened that door. And why, because every last bit of this was avoidable.
“It’s not an issue of moral repugnancy, it’s an issue of practicality. The surgery to remove legs is many times more complicated than the surgery to remove a uterus. The possibilities of phantom pain and infection at the amputation sites are much greater. No one has phantom-uterus pain, whereas amputees suffer from phantom-limb pain for years. You simply can’t compare the two as side-by-side options and demand that they be thought of equally and think that there’s a “gotcha”.
– You would be well served to learn about thousands of women with various medical complications resulting from a hysterectomy. But that’s really a minor point. “Practicality” is exactly what the “Ashley Treatment” is NOT supposed to be about, yet there you have it. It’s practical to lop off her body parts – she didn’t need them anyway, so it was done. Glad you see that.
“If, HEAVEN FORBID of course, Ashley had been raped in a nursing home and became pregnant, does that also mean that you would not support her parents getting her an abortion because she could not consent to an abortion? Would you be arguing that she should bring the baby to term because, after all, that’s what’s natural? Because if so, there’s really nothing more to say.”
– Well, that wasn’t supposed to happen. You see, Ashley’s parents have assured the public that they would NEVER put her into an institution, that even if she grew to 300 pounds, she would remain in their home, cared for by her family.
“Sure. Caregivers can put D-N-R orders on their loved one’s bedsides too, or request that feeding tubes be pulled, and it’s all ok with me. In fact, my living will specifically requests that my caregivers and loved ones do so under specific circumstances. Why, is there a problem with that?”
– I would remind you of this: every single human being must die, that is a profoundly natural reality. And sometimes the parents of children in tragic circumstances must face tough questions about life support. Ashley’s parents opted to remove her organs for the sake of convenience; there’s no comparison to be made.
Myca
I’m sorry that you have failed to see the love, humanity and logic that Jane has carefully outlined with each post.
In other threads I’ve seen many people denigrate MRA or racist thoughts/actions without second thought. Part of being an activist is to call bullsh*t when you see it. I don’t hear too many people complaining about that. Why is it that when someone is speaking on behalf of the disabled with the same passion and concern as feminists speak on behalf of gender equality she is suddenly demonizing the other side and being all around mean?
Oh, I forgot, many feminists have the same ablist crap as the rest of the world and haven’t moved past it. Look at the original post. What was done to Ashley was inhumane and is a violation of her personhood – it’s a disability rights issue to be sure, it is also a FEMINIST issue – because it’s true that her parents wanted to keep Ashley a little girl. Not just because size wise it makes her easier to move, but the gist I get from what they themselves have written is because it makes it easier to love her. Does anyone else not see the connection to the diminutive status of women for CENTURIES? They want her to remain a little girl and not grow up because it is easier on them. Do you really not see a problem with that?
I actually haven’t seen Jane “demonize” anyone – least of all Ashley’s parents (who should they have wanted to keep this private, should not have started a blog reccommending this treatment). Rather I have seen her carefully and lovingly point out that at the end of the day what was done was not necessary and no one has yet provided a cohesive argument that it was.
Stunting her growth and cutting out healthy organs and tissues was done instead of other things that are available – lifts, equipment, qualified care providers etc.
I have said this before and I will say it again. I do not think that Ashley’s parents don’t love their daughter. I think they love her in the only way they know how and they probably really did believe this was best. Mothers in Africa who have their daughters circumsized love their daughters too and they are doing what they truly think is best for them. It doesn’t make it right.
I also don’t trust doctors. And in fact, I think when you put 40 of them together they become less trustworthy, not more. But that only comes from years of personal and professional experience with physicians. If you want to believe the authority of physicians is almighty and they MUST be right because a bunch of them said so, fine.
I hope those of you who feel that way never argue that women are unnecessarily encouraged into C-sections and that we shouldn’t always trust modern medicine to treat women’s bodies in ways that are appropriate.
Jesus, don’t we frequently write about how UNTRUSTWORTHY institution of medicine is when it comes to ethics and women’s bodies? Why is it that we are willing to throw all that suspicion and skepticism away in this case?
I really have to stop coming here. It’s making me lose faith in feminists and that’s not a good thing.
Gotcha.
I’d agree that as an alternative to these operations, what they should have done is give Ashley up for adoption.
Then, as she sobbed, alone and unable to understand why the only parents she’d ever known weren’t holding her, suffering unbearable menstrual cramps, unable to lie comfortably due to her large breasts (which run in the family), cared for by strangers, waiting in vain for an adoption or the love that will never come, totally unable to understand the trauma of puberty . . . she could think to herself, “well, at least I have my uterus.”
Congratulations, guys, you’re hella compassionate.
Myca;
I missed where anyone argued anything like that…
Yes, and I don’t think any of us ever argued that healthy organs ought to be ripped forcibly from unimpared children, but that certainly didn’t prevent that particular caricature of our position.
I maintain that since they’re arguing against the procedures that allow Ashley’s parents to hold her, that means that they don’t want Ashley’s parents to hold her. Since having her parents hold her is Ashley’s primary joy in life, clearly they would prefer for her to not feel joy. I find that incredibly offensive and I have to say that the only possible reason that they think it’s okay to make that argument is that Ashley is disabled.
I believe that whatever the level of cognition, everyone deserves whatever measure of happiness they can achieve. Apparently some disagree.
Myca:
Honestly, if you want respect from me, you might want to demonstrate some of your own. “Gotcha” is probably not the way to start, but I can do the same.
“Then, as she sobbed, alone and unable to understand why the only parents she’d ever known weren’t holding her, suffering unbearable menstrual cramps, unable to lie comfortably due to her large breasts (which run in the family), cared for by strangers, waiting in vain for an adoption or the love that will never come, totally unable to understand the trauma of puberty . . . she could think to herself, “well, at least I have my uterus.”
– Okay Myca, you win. You “got me” there! Yes, we should remove the healthy organs of mentally deficient children in the remote event that those organs may one day cause them natural discomfort or get in their way or even that they may one day harbor malignancy. Remove their eyes to stave off eye cancers, remove their limbs so reduce area of future bed sores, remove vocal cords so they don’t involuntarily make noises that frighten them.
Yes, hack it all off – they’re just mental defectives, right? Oh, and as a benefit to them, they’ll be more manageable for their families to handle. Oh joy!
After all, they don’t have the rights of someone like…say…you do.
See, Jane, I more or less think that that’s the argument you’ve been making all along. Like I said in my last post,
My position is this:
Ashley has no sense of bodily integrity, and will never use (and can never ethically use) her womb.
She does have a sense of whether or not she’s being held and carried by people who care for her.
If it were me, and if I had to give up my (unused and unusable) testicles in order to maintain one of the few things in life that brings me joy, I would do it in a quick second.
That’s where my decision comes from, not viewing Ashley as less than human or lacking empathy or thinking it’s okay to butcher the mentally impared.
And I say this as someone with full cognition who’s able to make these decisions for myself and who has a sense of intellectual attachment to my reproductive organs. Ashley lacks all of this.
“I don’t think any of us ever argued that healthy organs ought to be ripped forcibly from unimpared children”
– Forcibly ripping healthy organs from unimpaired children is not ever what you’ve argued, AGREED. You’ve never suggested such a heinous act! Yet, doing that to impaired children is just fine and dandy – well, so long as mom and dad say so.
“I maintain that since they’re arguing against the procedures that allow Ashley’s parents to hold her, that means that they don’t want Ashley’s parents to hold her.”
“clearly they would prefer for her to not feel joy”
– You fabricated an attributed to me a ridiculous, nonsensical position I do not have and then went on to tear it down with ease. Talk about building a strawman!
Using your ridiculous rationale, I could say that by removing her organs, you want to rob this girl of the opportunity to have a family, her own lovely children to raise. Yet I don’t accuse you of such hysterical motivations since, for one thing, I know it’s NOT your position.
What this method actually demonstrates is how incapable you are of arguing a real point on its merits. If you feel ill-equipped and, believe me, thus far you are, bow out gracefully. Otherwise, everyone gets to witness these mad leaps of gibberish.
Okay, well, I’ve stated my position fairly clearly in comments #248 and #249.
I’m not arguing that there’s no trade-off here between quality of life issues and bodily integrity issues, I just think that the seesaw pretty clearly comes down on the side of quality of life.
My problem is that I feel as though all through this you’ve refused to acknowledge the trade-off exists at all, have attributed malice to your opponents, and have simply ignored arguments based in quality of life considerations.
It’s one thing to argue that it’s more important for her body to be intact than for her to be happy or tfor her to be able to be carried by her parents, but to not even acknowledge that there’s a trade-off at all is intellectually dishonest.
“I don’t think any of us ever argued that healthy organs ought to be ripped forcibly from unimpared children, but that certainly didn’t prevent that particular caricature of our position.”
Myca, can you point to where I suggested that you argued for the forcible removal of healthy organs from unimpaired children? Because I’d like to see where I made a “caricature” of that position.
As for losing your male parts to “maintain one of the few things in life that brings me joy,” can you please tell me how removing Ashley’s uterus and breast tissue has allowed her to “maintain” joy she would otherwise have lost?
In post #198, for example, you said:
In the immediately previous post Robert said:
Back in post 189, Ampersand said:
This is what I mean when I say that you simply ignore dissenting arguments based in quality of life considerations. The passage from your post #198 is simply untrue.
Certainly. I believe that this removal was performed as part of the process of keeping her small so that her parents can continue to lift and carry her, one of the few things which bring her joy.
If she grew large enough so that her parents couldn’t lift and carry her, she wouldn’t be able to enjoy that happiness any longer.
Oh, and the breast tissue.
Her parents have explained (several times) that extremely large breasts are genetically favored for the family, and that Ashley enjoys lying on her front.
With very large breasts, it becomes difficult to get comfortable, and lying on one’s front is impossible.
As I’ve said elsewhere ,I don’t view any of my organs as magic or special as compared to any other. My sex organs are not sacred. Neither are anyone else’s. What makes them useful is the use to which they’re put.
Ashley is unable to ethically put either her breasts or uterus to their intended purpose. At that point, they’re like an appendix . . . they’re only a liability.
“Ashley has no sense of bodily integrity, and will never use (and can never ethically use) her womb.
She does have a sense of whether or not she’s being held and carried by people who care for her.
If it were me, and if I had to give up my (unused and unusable) testicles in order to maintain one of the few things in life that brings me joy, I would do it in a quick second.
That’s where my decision comes from, not viewing Ashley as less than human or lacking empathy or thinking it’s okay to butcher the mentally impared. ”
Agreed (though substitute uterus for testicles in my case).
The language being used is quite telling. If you view this as butchering the mentally impaired, did you also view the Schiavo case as murdering the mentally impaired?
I guess I can’t fundamentally see a hysterectomy as “butchering.” It’s just a uterus. I’m done with mine, having borne several children, and if it needed to be removed tomorrow, oh well. It hardly makes me less of a woman or anything. Maybe it makes other women feel like they are less women, but that’s their hang-up, I suppose. I don’t know why I’m supposed to be more attached to it than, say, my appendix.
Crossposted, but yeah. Same feeling, same example.
“It’s one thing to argue that it’s more important for her body to be intact than for her to be happy or tfor her to be able to be carried by her parents, but to not even acknowledge that there’s a trade-off at all is intellectually dishonest.”
Myca, the flagrant intellectual dishonesty belongs to you and it is clearly documented above. It is you who has claimed I “don’t want Ashley’s parents to hold her” and that I “would prefer for her to not feel joy” (both comments in #245) – yet you can’t substantiate either!
If there was no “trade-off,” I would be making irrational comments like you do. I would say, “gee, they removed her uterus and breasts ’cause they felt like it.” Uh, but that would be intellectual dishonesty and it has no place in my camp. I wish you felt the same.
I acknowledge the reasons for their decision exist. I merely state, quite emphatically, that those reasons are extremely premature and deface the integrity of this girl to be treated as a human being. Removing organs is quite radical. Besides which, even if she did experience minor cramping, most women get by just fine with an Advil. I think that’s a far better alternative to cutting open a young girl and taking her organs – which is closer to swatting a fly with a sledgehammer (i.e., far more excessive than necessary).
I don’t think that making the assumption that the child may or may not one day have menstrual cramps or that she may or may not develop large breasts warrants removing her perfectly healthy organs when no one knows that any of that would ever come to pass.
If, HEAVEN FORBID of course, Ashley had been raped in a nursing home and became pregnant, does that also mean that you would not support her parents getting her an abortion because she could not consent to an abortion? Would you be arguing that she should bring the baby to term because, after all, that’s what’s natural? Because if so, there’s really nothing more to say.”
– Well, that wasn’t supposed to happen. You see, Ashley’s parents have assured the public that they would NEVER put her into an institution, that even if she grew to 300 pounds, she would remain in their home, cared for by her family. ”
You dodged my question nicely. But sadly, these things CAN go on. Especially if she needs a nice big strong man to turn her when her parents are no longer able to. IF, again heaven forbid, she was raped, obviously it goes without saying that the rapist would have violated her bodily integrity. Would it be an additional violation of her bodily integrity if her parents were then to decide that she should have an abortion rather than serve as an incubator? I’m just trying to get to whether you think there is any medical decision that her parents can make for her that doesn’t violate her bodily integrity.
If she didn’t have the hysterectomy, and she wound up menstruating, and the parents prophylactically decided that she should have Advil through her feeding tube -x- days a month, would that be violating her bodily integrity? Or is it just the presence of a scalpel that violates bodily integrity, but not the delivery of a drug through a feeding tube (which in and of itself necessitated surgery)?
Myca,
Even in the cut/pasted posts of others you illustrated, nothing, not one single time did you show how I suggested that you argued for the forcible removal of healthy organs from unimpaired children? Nor do you demonstrate where I made a “caricature” of that position.
Are you confused? Do you know know the difference between impaired and unimpaired?
I specifically said earlier that the same people who had no trouble with Ashley’s uterus and breast removal wouldn’t likely be as open to her leg removal on the principle of being lighter and easier to manage. And, some posters said they would support leg removal if it was going to provide a benefit in her quality of life.
So….what’s the problem? AGAIN, where do I SUGGEST THAT YOU ARGUED FOR THE FORCIBLE REMOVAL OF HEALTHY ORGANS FROM UNIMPAIRED CHILDREN? (and it’s obnoxiously in caps because you have clearly not read your own words!)
“I believe that this removal was performed as part of the process of keeping her small so that her parents can continue to lift and carry her, one of the few things which bring her joy.”
And you’d be wrong Myca. Removing a uterus and breast tissue does not stop growth – that was done by a massive infusion of estrogen over the course of a couple of years.
So, again, how did removing Ashley’s uterus and breast tissue allow her to “maintain” joy she would otherwise have lost?
“documented above. It is you who has claimed I “don’t want Ashley’s parents to hold her” and that I “would prefer for her to not feel joy” (both comments in #245) – yet you can’t substantiate either!”
Jane,
I don’t believe that anyone was seriously arguing that you hold those positions. If I followed the exchange correctly, Myca felt that you were setting up strawmen instead of responding to his arguments. To demonstrate what that felt like, he set up a strawman that is based on but mischaracterizes your arguments.
“Removing organs is quite radical. Besides which, even if she did experience minor cramping, most women get by just fine with an Advil. I think that’s a far better alternative to cutting open a young girl and taking her organs – which is closer to swatting a fly with a sledgehammer (i.e., far more excessive than necessary).”
Ah, now we’re getting somewhere. I agree that it could be compared to swatting the fly with the sledgehammer.
But in any world without perfect information (in this case, Ashley’s opinions, since she can’t express them), there are two potential mistakes that can be made. In statistics, they are called Type I and Type II errors. In this case, Type I error would be doing nothing and having her suffer in pain, not knowing why or how, not having any of the conceptual knowledge and understanding about menstruation that her “normal” sister does, not being able to indicate that she’s in pain, not being able to indicate whether the pain relief given is sufficient, not even being able to stretch, walk around, do yoga or use other non-pharma methods of pain relief. Type II error would be doing the hysterectomy when in fact it wasn’t “needed” and her menstrual periods would have been uneventful / non-traumatic, so Ashley suffers internal sadness for being aware that she, unlike “normal” women, no longer has a uterus.
In setting my decision criteria, if it were my daughter, I’d much rather avoid the Type I error than the Type II error. There are potential errors in every move we make — in doing things and in not doing things. In this instance, in my opinion, the Type II error of doing-something-that-wasn’t-actually-needed is far less important than the Type I error of not-doing-something-that-was-actually-needed. Consult your local statistics book for further explanation. (These are sometimes also called alpha and beta errors instead of Type I and Type II.)
Apply this to Schiavo – the Type I error is doing nothing and meanwhile, the “real Terri” is locked-in, fully aware but unable to communicate and screaming in horror that she doesn’t want to go on like this; the Type II error is doing something (pulling a feeding tube) and meanwhile, the “real Terri” is locked-in, screaming, “no, I want to live.” People’s perceptions of where they stood on Schiavo were based on how they personally weighted the probability of Type I vs Type II error. That’s what happening here too. Myca and I are weighing the probability of Type I (Ashley suffers and can’t communicate it) versus Type II (Ashley’s upset she no longer has a uterus) and concluding that we personally think Type I is a more serious concern. You, of course, are welcome to feel differently.
“Her parents have explained (several times) that extremely large breasts are genetically favored for the family, and that Ashley enjoys lying on her front.
With very large breasts, it becomes difficult to get comfortable, and lying on one’s front is impossible.”
Myca, Is this your strategy? To lie? ‘Cause I’ll just plain feel better if you concede you didn’t read her parent’s blog and that you just don’t know their reasons for the surgeries.
1) No, they NEVER said Ashley “enjoys lying on her front.” 2) She DID NOT have very large breasts – she was an undeveloped child. 3) To assume she will develop large, grotesque breasts that would impede her every movement and be a source of extreme discomfort for her is absurd and horrifying, particularly when used as justification to have them removed!
“I believe that this removal was performed as part of the process of keeping her small so that her parents can continue to lift and carry her, one of the few things which bring her joy.”
And you’d be wrong Myca. Removing a uterus and breast tissue does not stop growth – that was done by a massive infusion of estrogen over the course of a couple of years.
So, again, how did removing Ashley’s uterus and breast tissue allow her to “maintain” joy she would otherwise have lost? >>
What benefit do you think Ashley would have from knowing (to the extent that she can know things) that she has a full adult height, an intact uterus and womanly breasts? Not what benefits do YOU have from those things — what benefits does Ashley get.
What benefits do you think Ashley would have, both physically and emotionally, from being able to be held by her family and turned more often to prevent bedsores and the like? Not what benefits do YOU have from these things (presumably none, since you don’t need to be turned to prevent bedsores, I’m guessing) — what benefits does Ashley get.
“No, they NEVER said Ashley “enjoys lying on her front.” 2) She DID NOT have very large breasts – she was an undeveloped child. 3) To assume she will develop large, grotesque breasts that would impede her every movement and be a source of extreme discomfort for her is absurd and horrifying, particularly when used as justification to have them removed!”
It WAS a reasonable assumption that she’d develop large breasts given family history, including family members who required breast reductions. And did you read any of the comments over at Pandagon about the real difficulty in fitting larger-breasted women into the types of wheelchair harnesses she uses, and how incredibly difficult it is even for disabled women who CAN communicate?
I think you’re projecting the experience of a “normal” large-busted women to the experience of someone who is immobile and who remains wherever she is placed. She can’t so much as brush a hair from her face, much less readjust herself in bed or in a wheelchair.
To assume she will develop large, grotesque breasts that would impede her every movement and be a source of extreme discomfort for her is absurd and horrifying, particularly when used as justification to have them removed!”
Are you also not aware of the fact that a) br ca runs in the family, b) she won’t be able to do self-exams, c) br exams on someone of her cognition level can be upsetting / traumatic in a way they aren’t for “normal” people; d) forcing someone in that state to undergo a mammogram and be smooshed into a machine, not knowing what’s going on, would be incredibly traumatic for her?
BTW, if her parents had her get mammograms at -x- intervals, would that be a violation of her bodily integrity since, after all, she’s not consenting?
The lack of compassion for her REAL experience is unbelievable. All the fancy-schmancy talk about her valuing her uterus and breasts, but who gives a shit if the poor thing is traumatized by blood and pain she doesn’t understand, pap smears, breast exams and mammograms she doesn’t understand — as long as she has her almighty uterus that she’s not even aware of, it’s all good. Blech.
Let me tell you something. My positions may not make everyone feel warm and fuzzy but I don’t dodge! If I didn’t answer this previously, it was an oversight and I’ll do so now.
“You dodged my question nicely. But sadly, these things CAN go on. Especially if she needs a nice big strong man to turn her when her parents are no longer able to. IF, again heaven forbid, she was raped, obviously it goes without saying that the rapist would have violated her bodily integrity. Would it be an additional violation of her bodily integrity if her parents were then to decide that she should have an abortion rather than serve as an incubator? I’m just trying to get to whether you think there is any medical decision that her parents can make for her that doesn’t violate her bodily integrity.”
– This is not all that much a tough call because an embryo is not a natural part of the human body. It is not an organ and its existence is transient. In the event such a repulsive thing were done to Ashley, removing the embryo would be no more complicated than a therapeutic D & C and would rob her of nothing she was born with.
“If she didn’t have the hysterectomy, and she wound up menstruating, and the parents prophylactically decided that she should have Advil through her feeding tube -x- days a month, would that be violating her bodily integrity? Or is it just the presence of a scalpel that violates bodily integrity, but not the delivery of a drug through a feeding tube (which in and of itself necessitated surgery)?”
– If removing a healthy organ is tantamount to giving your child an Advil, then we’ve veered dangerously off the road.
“I don’t believe that anyone was seriously arguing that you hold those positions. If I followed the exchange correctly, Myca felt that you were setting up strawmen instead of responding to his arguments. To demonstrate what that felt like, he set up a strawman that is based on but mischaracterizes your arguments.”
Mandolin,
If Myca felt that I was setting up strawmen, he should have pointed it out – as I clearly did so when he established one. Instead, he hurled some baseless, hysterical nonsense my way.
Suzanne,
Thank you for extending me the honor of disagreement regarding Type I or Type II errors and which I’d rather risk.
But what I disagree with is the basis upon which you formulated the descriptions of Type I and Type II.
I could say:
Type I: Ashley experiences normal and expected menstrual discomfort. She cannot communicate such and endures painful periods throughout her reproductive years. (She may also experience headaches she cannot communicate – do you remove her brain?)
Type II: On the chance that Ashley may eventually experience menstrual cramping, her uterus is removed. Ashley experiences no associated cramping. In the process the precedent is set that Ashley is less worthy of her organs than her normal sister. Next year a case can be made to remove her ear drums over the fear that she may suffer tinnitus in the future – and the organ loss piles up.
Yeah, well, I guess we will have to disagree.
“What benefit do you think Ashley would have from knowing (to the extent that she can know things) that she has a full adult height, an intact uterus and womanly breasts? Not what benefits do YOU have from those things — what benefits does Ashley get.”
Oh, not so fast Suzanne. This is not all you-dole-out-questions-and-I-answer-you. How about you address my question to Myca:
How did removing Ashley’s uterus and breast tissue allow her to “maintain” joy she would otherwise have lost?
“It WAS a reasonable assumption that she’d develop large breasts given family history, including family members who required breast reductions. And did you read any of the comments over at Pandagon about the real difficulty in fitting larger-breasted women into the types of wheelchair harnesses she uses, and how incredibly difficult it is even for disabled women who CAN communicate?”
– Suzanne, her own mother doesn’t have large breasts and the only member noted was an aunt who’d had a reduction. So what?! My aunt had a reduction and my cousin, her daughter, is a full A cup (on a really bloated day). And still, ASSUMING that she MIGHT have large breasts is no reason to remove them before even an ounce of development had begun!
I’m seeing a lot of ablist assumptions about Ashley and her life here. How do you know that being lifted by her parents is one of the few things that give her joy? Just because she doesn’t always communicate in a way that most of us would understand certainly does not mean that she doesn’t experience other pleasures. (I highly reccomend Ballastexistenz’s latest video on this subject.) But because most able-bodied people feel horrified at the thought of ever being “like that”, a whole lot of assumptions about what it must be like get thrown around carelessly without being questioned. I also don’t believe we should necessarily assume that her mental state will never change at all. It certainly wouldn’t be the first time the medical profession has prematurely written off a disabled person.
Another point that supporters of this seem to be overlooking is that the hormonal treatments she is receiving can actually be quite dangerous, perhaps even carcinogenic. (Ironic, given her parents’ use of cancer to justify the procedure.) IMO natural hormonal regulation is preferable from purely a health standpoint. When it comes to non-medically neccessary surgery I’m with the Catholic Church. Unneccessary surgery without consent is particularly apalling.
“I’m seeing a lot of ablist assumptions about Ashley and her life here. How do you know that being lifted by her parents is one of the few things that give her joy? Just because she doesn’t always communicate in a way that most of us would understand certainly does not mean that she doesn’t experience other pleasures. ”
We don’t, of course. But it’s certainly a more reasonable and reasoned assumption that she gets joy from being held by and spending time with her family, than that she gets joy out of knowing that she has a uterus inside her just like mom, sis, aunt and grandma. But hey, that’s just my assumption.
“I also don’t believe we should necessarily assume that her mental state will never change at all. It certainly wouldn’t be the first time the medical profession has prematurely written off a disabled person. ”
Oh, see, I do. Because I don’t want to pretend that I’m a doctor making armchair diagnoses when there are umpteen real doctors and the consensus is clearly and unequivocally that she won’t. This is the same argument that was made two years ago with Schiavo — “well, I just don’t wanna believe she’s PVS” and so they dragged out that Dr. Hammesfahr whose own medical school repudiated him. And they all looked pretty darn stupid, didn’t they, when that autopsy came out.
“This is not all that much a tough call because an embryo is not a natural part of the human body. It is not an organ and its existence is transient. In the event such a repulsive thing were done to Ashley, removing the embryo would be no more complicated than a therapeutic D & C and would rob her of nothing she was born with. ”
It sure is a natural part of a woman’s body who has had sex.
But I thought your issue was related to her dignity and consent? She can no more consent to the abortion than she could to the hyst. So why would the abortion be ok but the hyst not? You mentioned that removing the embryo would be no more complicated than a D&C. Would it make a diff to you if a hyst was no more complicated (medically speaking) than a D&C? If not, then why mention the ‘uncomplicatedness’ of the D&C.
From a teen’s perspective I agree with everything Ashley’s parents have done for her thus far. Living in today’s society we allow ourselves to be cut up by cosmetic surgeons to “look” more appealing. Why then, can a family not improve the quality of the life of their own child? Who is to say that anyone has the right to go get a breast augmentation? You were born with DD cup sized breasts so what gives you the right to remove them? Ashley will be no more keen to any of these procedures today as she will be 30 years from now. She’d never know life with breasts if she was allowed the chance for them to grow, hell, she doesn’t know what being hungry is. God gave Ashley to her parents, so by all means, let them and God decide what is best for her. At the end of the day she’s their child and agree with them or not, you don’t have to see what they see everyday or deal with what they deal with.
“If Myca felt that I was setting up strawmen, he should have pointed it out – as I clearly did so when he established one. Instead, he hurled some baseless, hysterical nonsense my way. ”
I’m pretty sure he did. I think you might have missed it.
Also, the child is being given a hormone treatment that will stunt her growth. The hysterectomy is part of that treatment.
And the child did not have large breasts, however she had a likelihood of developing them, and the surgery to remove her current breast buds was minor in comparison to what would have later been required.
All this was talked about at length on the thread. Rather than accusing other people of lying, perhaps you should read more closely.
They also believe if your husband is beating you get theropy but don’t ever get divorced ?!? Really , are we gonna go there ?
Um Jane I’m confussed ? Didn’t you say …….
Ashley will never understand what was done, true. She also won’t understand being paraded outisde in the nude with words like “freak” drawn on her body. Does that mean you don’t violate her dignity to do such a thing?
It isn’t about what she understands; it’s about what we as a civilized, humane society understand and what we’ll accept.
An indignity is recognized by the act, not by whom it is done to.
*I agree that Ashley’s mental deficiency is such that she will likely never contribute to her care and wishes in any meaningful way.
And, still, she remains a human being. She really does have basic human rights
*C’mon folks! She’s a human being!
All this time I was under the impression your problem was with how grossly Ashley’s human rights were offended. You don’t think concenting to an abortion on behalf of someone is an infringement of their human rights ??
I mean really the way you talk about an abortion is like the way I talk about getting tubes in my ears.
– This is not all that much a tough call because an embryo is not a natural part of the human body. It is not an organ and its existence is transient. In the event such a repulsive thing were done to Ashley, removing the embryo would be no more complicated than a therapeutic D & C and would rob her of nothing she was born with.
Wouldn’t it rob her of the natural order of life, her right to bear children. After all that is what your uterus is for and why alot of people are so upset. Her rights are being abused.
To me it sounds like her parents got benefits ( indirectly as you stated) from this and therefor they MUST have done it for themselves. How dare they, lets jump on the blog and browbeat them.
How do you know that being lifted by her parents is one of the few things that give her joy? Just because she doesn’t always communicate in a way that most of us would understand certainly does not mean that she doesn’t experience other pleasures.
I also don’t believe we should necessarily assume that her mental state will never change at all. It certainly wouldn’t be the first time the medical profession has prematurely written off a disabled person.
First off her parents said it is one of her only joys and I for one believe that. Have you seem the pictures, have you ever spent time with a three month old infant. That’s how these children act (3 months old) They want the things 3 month olds want, and act the way 3 month olds act. From my own life I can tell you that my daughter has only two joys in all the world, being held and music. That’s it, nothing else. They do communicate clearly. When sad, they cry. When mad, they scream. When happy, they smile/laugh. etc.
Just like a three month old.
As for assumeing her mental state will never change. Please ! You sound like Social Security trying to stop a check. Have you seen her MRIs ? How about Cat scans ? Good Grief, you think she can grown back pieces of her brain and magically be healthy again? This statement was out of sarcasm waswn’t it ???
Or do you really believe she could recover ? If you do let me reassure you it will never happen.
I’m quite sure not one single person has EVER addressed the question I’ve posed repetedly. And I think I know why. Because you know full well that there is no answer whatsoever – that you must believe with all of your might and soul that Ashley’s parents made sound predictions to justify their actions. And you could be very wrong.
Q: How did Ashley benefit from having her uterus and breast tissue removed?
1) I don’t want to hear about her parent’s psychic ability to predict that she may have large breasts. I think every single woman can point to an aunt/mother/cousin/sister/neice who has a different frame from the other females in the family.
2) I don’t want to hear about her parent’s psychic ability to predict that she might have breast cancer or uterine cancer.
3) I don’t want to hear about her parent’s psychic ability to predict that she might be raped, despite claiming that they’ll never turn her over to an institution.
4) And most of all, I don’t want to hear about your misinformed medical beliefs that removal of a uterus stunts growth. That is patently false.
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).
“And the child did not have large breasts, however she had a likelihood of developing them, and the surgery to remove her current breast buds was minor in comparison to what would have later been required.”
– The “child’s” own mother DOES NOT have large breasts – is there a closer relative you can point to that would predispose the “child” to this trait?” Simply because you have some females in your family tree that have a certain trait in no way assures that you’ll have it.
– Again, you’re justifying a pre-emptive strike by removing an organ that, in all likelihood, will not trouble this “child” in the first place.
– The default position SHOULD HAVE BEEN, let’s fix what’s broken and not disembowel this human being in the event this or that might or might not happen.
“You don’t think concenting to an abortion on behalf of someone is an infringement of their human rights ??
I mean really the way you talk about an abortion is like the way I talk about getting tubes in my ears. ”
– You’re confused on where the “infringement” lies. The “infringement” was the rape. That was the criminal act. If that criminal act results in a pregnancy, it’s indistinguishable from the rape having resulted in a perforated vagina that needed to be repaired. Both conditions would need to be remedied.
– Whatever procedure is done to return the person to “whole” as they were prior to the rape is as it should be – by law, by nature and even by moral conscience.
– And you interpret my talk of abortion with the ease of you having tubes put into your ears is because, believe it or not Kimberly, a D & C is an extremely common and relatively low-risk procedure (certainly LEAPS AND BOUNDS lower risk than invasive surgery to remove an organ!). Now don’t fly off into a huff. I’m certain someone strapping you down to abort your child would be emotionally devastating. But physically? No, not in the slightest. (and for the medically naive…D & C’s are very common procedures done often to women for a whole host of reasons having nothing to do with separating an embryo from the uterine wall)
“As for assumeing her mental state will never change. Please ! You sound like Social Security trying to stop a check. Have you seen her MRIs ? How about Cat scans ? Good Grief, you think she can grown back pieces of her brain and magically be healthy again? This statement was out of sarcasm waswn’t it ???
Or do you really believe she could recover ? If you do let me reassure you it will never happen.”
– I don’t even have to look at a former post where I might have said this. I can assure you it was obviously sarcastic if I said it. The chances of Ashley recovering significant brain function are slightly less than a snowball planning a sabbatical in hell.
“First off her parents said it is one of her only joys and I for one believe that. Have you seem the pictures, have you ever spent time with a three month old infant. That’s how these children act (3 months old) They want the things 3 month olds want, and act the way 3 month olds act. From my own life I can tell you that my daughter has only two joys in all the world, being held and music. That’s it, nothing else. They do communicate clearly.”
I’m not completely dismissing her parents’ account of her condition, but I just don’t think we should assume their assesment is gospel truth, either. I’m coming at this from the perspective of someone (who has a relatively minor neurological condition myself) interested in advocacy for people with cognitive/developmental disabilities. I would argue that many people with cognitive disabilities express their emotions quite differently than most people might expect. That doesn’t mean we should automatically assume that they have no feelings other than those which are easily visible to us. Again, I ask you to look at Ballastexistenz’s latest video, which explains this all far better than I ever could. Maybe I’m wrong about Ashley and maybe her parents are right after all. But neither you nor they can possibly know that for sure. I also think that Ashley, because she has nine years of experiences, isn’t truly comprable to a three-month infant. Even if we accept that her cognitive abilities are that of an infant, her life experience is not.
“As for assumeing her mental state will never change. Please ! You sound like Social Security trying to stop a check. Have you seen her MRIs ? How about Cat scans ? Good Grief, you think she can grown back pieces of her brain and magically be healthy again? This statement was out of sarcasm waswn’t it ???
Or do you really believe she could recover ? If you do let me reassure you it will never happen. ”
Sigh. That’s not an accurate representation of my words and frankly it came off as a bit rude. No, I don’t think she’ll ever be what society considers “healthy”, “whole”, or “normal.” She probably won’t ever come particularly close, even. What I actually said was that I think it may be *possible* that her understanding will *improve* someday. Maybe that improvement will only be very minor, but that’s still development. CAT scans and MRIs are not always crystal balls. And the existence of developmentally delayed adults who were written off as children but later experienced further development supports that. Ashley clearly has a different developlental trajectory than is typical, but developmental disability doesn’t always and inevitably equal total stasis. She’s just on a different scale.
>>The default position SHOULD HAVE BEEN, let’s fix what’s broken and not disembowel this human being in the event this or that might or might not happen.>>
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 interpret my talk of abortion with the ease of you having tubes put into your ears is because, believe it or not Kimberly, a D & C is an extremely common and relatively low-risk procedure (certainly LEAPS AND BOUNDS lower risk than invasive surgery to remove an organ!). >>
Is your issue with the hysterectomy the fact that’s it’s *invasive surgery, Jane? IOW, would it have made a difference if hysterectomy-removal was facilitated through something less invasive? (let’s say, zapping the way kidney stones are zapped) Or is it with the removal of the uterus in general, in which case whether the procedure is invasive or not is irrelevant?
>>I’m not completely dismissing her parents’ account of her condition, but I just don’t think we should assume their assesment is gospel truth, either. >>
It’s not just their assessment. It’s the entire medical community involved withthe case.
>>I would argue that many people with cognitive disabilities express their emotions quite differently than most people might expect. That doesn’t mean we should automatically assume that they have no feelings other than those which are easily visible to us. >>
I agree (and Ballasexistenz’s videos are very eye-opening). Nonetheless, the possibility that in actuality, she’s fully aware of the medical discusssions held in front of her, and that inside she’s screaming, “I want my height! I want my uterus! I want my breasts!” are so low as to be infinitesmal. The possibility that she’s going to be unhappy as she grows larger and is unable to be held or carried, the possibility that she’s going to develop physical complications such as bedsores from not being turned as often, and the possibility that she’ll experience what *she’ll perceive as trauma from menstrual pain, pap smears, mammograms, breast exams, etc. seem like much greater possibilities to me.
“It’s not just their assessment. It’s the entire medical community involved withthe case.”
One hospital is not the entire medical community by any stretch of the imagination. Besides, doctors are people too. Their ethical judgements aren’t above reproach. I would also wonder how many disabled people the ethics board consulted in approving this procedure. (I’m guessing none.)
As for what Ashley would want, I don’t think anyone can say that for sure. I think it’s perfectly plausible to think she wouldn’t want to undergo painful and unnecessary surgical procedures, however. Procedures which will seriously mess with the natural hormonal balance of her body and force her to undergo hormone therapy for the rest of her life, in addition to the obvious body alteration issues. I’m a bit perplexed as to why those who say they’re concerned with Ashley aren’t more concerned about the potential trauma and danger of these procedures. This isn’t just a minor thing and I think there’s a more than trivial possibility that she would not in fact have wanted this treatment. When in doubt, the “first do no harm” principal” ought to guide us to a more cautious and responsible course of action. Any problems she would have encountered could have been addressed through other, less drastic means (as many bloggers have pointed out, so I won’t rehash that). But this course of action can never be changed or undone. Given that Ashley is only nine and has a while to go before she seriously has to worry about cancer, pap smears, or mammograms, this was all rather premature IMO. It’s sadly typical of the way society conceives of disabled people, however–instead of doing the hard work to change society and make it more accomadating, let’s just try and alter the individual instead. This sort of thinking is ugly in all of its incarnations.
# Jane Hill Writes:
January 18th, 2007 at 11:53 am
I’m quite sure not one single person has EVER addressed the question I’ve posed repetedly. And I think I know why. Because you know full well that there is no answer whatsoever – that you must believe with all of your might and soul that Ashley’s parents made sound predictions to justify their actions. And you could be very wrong.
You are right–the predictions could be incorrect–but you are wrong,/b> because you insist on a level of certainty which could never be possible.
We don’t have all the information. We can’t predict the future with complete accuracy. We never will.
the drugs you take could fail.
the car you buy could explode tomorrow.
you could die without ever using your health insurancety.
BUT… that we can’t say for certain what will happen doesn’t mean, as you imply, that the solution is always inaction. Instead, we act on the best information we can get. We balance the cost of getting more information against the cost of delay. We balance the cost of doing it now, in advance, against doing it later.
And we make a choice. A hard choice–but a necessary one.
That’s why we take the full course of antibiotics even though we “may not” really need those last three pills.
That’s why we elect to take chemo for our cancers, even though the surgeons “think they got it all.”
And that’s why Ashely’s parents made their decision the way they did.
I don’t believe you are misguided for disagreeing with them. Lord knows it’s a difficult issue. but your “unanswered questions” make no sense. Should we reject everything that’s uncertain? Should we require the impossible-to-acheive “negative proof”?
Q: How did Ashley benefit from having her uterus and breast tissue removed?
She received a probable FUTURE benefit.
1) I don’t want to hear about her parent’s psychic ability to predict that she may have large breasts. I think every single woman can point to an aunt/mother/cousin/sister/neice who has a different frame from the other females in the family.
OK. but let me make sure you understand what you’re saying:
A future benefit has REAL VALUE NOW. think of the stock market. Is a gift of Coca Cola stock–redeemable in 2010 for 100 shares–valueless? Does it, too, depend on the “psychic prediction” that the company will exist then? that the stock will be worth more than zero?
2) I don’t want to hear about her parent’s psychic ability to predict that she might have breast cancer or uterine cancer.
Well, this is sort of the same thing. Stranger though, at least to me.
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?
3) I don’t want to hear about her parent’s psychic ability to predict that she might be raped, despite claiming that they’ll never turn her over to an institution.
I’m not going to touch this one.
4) And most of all, I don’t want to hear about your misinformed medical beliefs that removal of a uterus stunts growth. That is patently false.
I don’t know enough to disagree or agree here.
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. We call it “security” when we’re in a good mood. I suspect that you yourself have even taken advantage of that fact some time in your life.
“If she wanted to make her point she should of found a parent of a child like Ashley who stands against the treatment. She shouldn’t of said “he knows best what it’s like” no he doesn’t.”
Do you understand that many of us with CP were misdiagnosed this way repeatedly? That they told our parents we would be “vegetables?” Granted, I am not brilliant, but do I sound like a vegetable to you?
Do you understand our parents were LIED to? Why do you simply assume everything Ashley’s parents were told was true?
I think the major difference in this thread is people who understand that these ableist prognoses can negatively influence the outcome of a child’s life, and those who trust the Medical Deities to get everything about disability correct. (LOL–and why should we, when they NEVER HAVE before?)
PS: Blue, can’t post on your blog. Cookies or something? (email me at Mrsoul675@yahoo.com)
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.
[quote]Why is it that when someone is speaking on behalf of the disabled with the same passion and concern as feminists speak on behalf of gender equality she is suddenly demonizing the other side and being all around mean?[/quote]
Thanks for this observation, Kate.
MrSoul,
I am one of those parents. I was told my daughter was dead. She however was very much alive. I was then told she wouldn’t live to be a year she is now 11 years old. I know how doctors make horrible life altering mistakes. My daughter’s brain was taken from her by a doctor with a drug problem.
However, you can not be compaired to a child like Ashley. You can do things that Ashley can’t imagine. You are a very different case than Ashley. People who compair mild muscle atrophy to complete spastic quadropalicic are stretching the picture to get the ‘view’ they want. Ashley has so much more that cp. I haven’t read your story the way I have read Ashley’s but you just being here shows me you are nothing like Ashley.
What I do believe is that Ashley’s parents , just like your parents, Want to do anything they can to make her life better. Ashley’s parents , like your parents know better what Ashley loves and wants more than doctors. My daughter’s own specialists say, “well mom you know her best, what do you think?”
Does this help you understand were I am coming from?