http://ashleytreatment.spaces.live.com/blog
For an especially sickening example of the abuse of children with disabilities, in this case sanctioned by a major children's hospital, and abuse actually performed by physicans, check out the above.
In essence, parents of a 9 y/o girl w/ "static encephalopathy" (permanent, unchanging brain damage, aka cerebral palsy in our home) have determined in their infinite *stupidity* that it was somehow in their daughter's best interest to perform a hysterectomy and removal of breast tissue along w/ hormone treatment to prevent her from growing to her full adult height (estimated at 5'6"). Since she will never need her uterus or breasts, no big deal to remove them. Since caring for a 5'6" adult w/ severe disabilities would be difficult (for who, one has to wonder), no big deal to perform radical surgery so the parents can keep their "pillow angel". I kid you not, that is what they call her... their "pillow angel". Pass the barf bags.
Using their logic, why not just perform quadruple amputations? I mean, really, she's not going to use her arms or legs, and if caregivers are not diligent when she becomes larger (which I guess she won't now) she could potentially have skin breakdown opening the door to life-threatening infections so... why not just get rid of that extra weight and bother now???
Holy crap - I was appalled, insulted, and outraged when a nutritionist suggested we limit Boo's caloric intake at the ripe old age of 6 so that he wouldn't get too big as an adult. Needless to say, she was fired instantly and we have continued to feed him so that he can be *healthy*. I guess I should be thankful that castration wasn't recommended.
Don't get me wrong - caring for a 5' something, 110+ pound, adult with physical disabilities is no walk in the park. I've got the trashed lumbar disks to prove that. But I am truly just sick to my stomach to imagine that it's acceptable medical practice in any case to surgically stunt a child's growth. This opens doors that we cannot possibly go through if we are going to be a pro-life, christian, family oriented country (said tongue in cheek). OTOH, perhaps Terry Schiavo's death was the death knell of the rights of all people with disabilities in this country to any kind of quality of life. How far away are we from euthanizing infants routinely - I know it already is happening on a thankfully rare yet all too frequent basis - based on CT scans, EEGs, and some nebulous and completely subjective standard of what their "quality of life" may be? Who has the wisdom to determine what constitutes "quality of life"? In fact, who has the wisdom to predict what any infant may or may not be able to do as an adult?
"Ashley's" parents need to be charged with child abuse. Her "physicians" need to be locked up for life for mutiliation. I am just revolted.
Edited to add... Some excellent opinions out there, but I gotta love Cory Silverberg's the best:
"If you believe in basic human rights, you have to extend them to all humans. You can’t say that you believe in human rights, but not for people who can’t articulate their value. You can’t say that you believe in human rights but not for people who would be better off dead. If you’re able to tell yourself that in this one case, it was okay for parents to mutilate their daughter with absolutely no cause, and no medical argument, then you need to rethink your definition of basic human rights. " http://sexuality.about.com/b/a/257889.htm
And I have to ask, where is the disability community? Why is there not a huge uproar over the fact that the *only* reason this was allowed to happen to Ashley is because she has a disability?
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51 comments:
I am surprised that there is not more of an uproar, too.
I find the whole process quite dehumanizing. No one knows the potential of this child and what the future holds for her...
GREAT post. We need to stand up for our children's rights and apparently the rights of all severely disabled children. I can not believe that this occured and all of these people failed Ashley. Who stood up for her?
Oh the disability community is out there. Keep lookin'!
I agree completely. Sure, between my mom and I caring for my sister it's still been difficult, challenging, and sometimes frustrating, but just because it's sometimes difficult for us doesn't give my mother or I the right to make drastic decisions about her body or ignore fundamental human rights which apply to her as much as anyone. And as difficult as it's been and how much it's changed the way we live so that she can live to her fullest capacity, it's worth it. She's become an individual with a lot more independence. She's not ever going to know how to wipe her butt on her own, but she's also made a lot of friends in her group home and has a system of people outside the family who know her and have developed friendships and relationships with her. I think the concept of quality of life has been misinterpreted in this case.
Dear Nufsaid,
I'd love to talk to you for a story I'm doing on Ashley.
Please email me at elizabeth.cohen@turner.com.
Thank you,
Elizabeth Cohen
CNN Medical Correspondent
Karen is so right. Who knows what the future holds? If my wife and I had made sweeping and permanenet decisons about our son's capabilities and potential when he was 9 he might not be doing many wonderful things he has master since then (he has megaencepholy and substantial mental and physical disabilites).I think Ashley's parents are just afraid of their daughter growing up. Apparently a disabled child they have come to grips with (somewhat). But a disabled adult in their home they can't even contemplate. That's sad. The least shocking thing about this story is that there were doctors out there who thought "The Ashley Treatment" was OK. My son's docs are great, but that's because we have discarded the ones who didn't get it along the way. And those who don't get it are sometimes found in surprising places -- like big prestigious children's hospitals.
... and, being petty, why block out everyone's face on their blog but Ashley's? If there's some kind of Internet danger they are worried about, does she not deserve the same protection the others are getting?
Darrenh:
GREAT comment! I wondered the same thing. Why is'nt her anonymity protected like the rest of her family's?
The procedures were done to preserve her quality of life. If left on her own, she would lie on her back all day; at least they are trying to improve her daily experience. Her parents are doing what they believe will keep her happy and healthy. If you are trying to live a 'Christian' life, please remember: those among you without sin, cast the first stone. And don't presume to know the mind and nature of the divine. God is omnipotent--he knows the depths of your soul, Ashley's soul, and Ashley's parents souls. Only God can judge.
Dear Anonymous - Just for the sake of discussion, didn't Ashley's parents not only second guess but also interfere with "the mind and nature of the divine"? If you subscribe to the ideal of a divine plan and a reason for everything... then you cannot possibly condone the actions they took.
That quadruple amputation idea sounds practical. Are you for or against the Ashley treatment?
Honestly, people, how can you form any opinion until you actually know how Ashley feels? Do you really know what she thinks of being shorter and not having to worry about getting a period? Realistically, she has no clue. She doesn't know. Happiness is relative. Quality of life won't be achieved for you the same way as it is for her. I think everyone is using their own bias and their own preconceived reality to form their opinions; which is natural anyway. That's OK. But for those that get so worked up about it... well, stick a cork in it. I sincerely feel that Ashley's parents are looking out for her contentment. When I grow old and require a lot of maintenance, I feel sorry those that have to change my diaper.
Ashley's parents did what they had to do to provide the best care that they were capable of to her.
The fact that people are up in arms about these parents making a choice ONLY THEY CAN MAKE, is stupid.
None of you have any idea what "dehumanizing" is. Obviously.
Karen, I think that you should just go away and leave stop sharing your opinions on this. The parents of ashley are doing the most loving thing they can think of and are trying to make her life easier. You have no right to tell people that they are wrong for simply loving their daughter and trying to do what is best for her. Her parents are amazingly brave people for what they did and trying to help their daughter rather than abandon her. Think please before writing your useless opinions
I take care of my son who is 19 who weighs 110 pounds and 6 ft tall. He can do barely anything for himself and yet he is a full time college student who is in an Honors College. Sure I could have told him college would be too hard for him and more importantly for me but I don't have that right.
I find it very offensive the parents did this to protect her from breast cancer and painful periods. Please. The next step will be someone telling me why don't we just end my sons life because its not going to last very long anyway and he is using resources that other more deserving children could use.
I'm glad to have found your site. This "pillow angel" thing (what a phrase!) is disgusting in the extreme. My partner of 30 years has CP (mild), my beautiful late niece was severely CP, and I just find it incomprehensible that parents would practice this sort of butchery and dehumanization on their child, aided by immoral doctors who probably love nothing better than sick experimentation with a novel twist.
Cut through all the "pillow angel" and "it's for her own good" BS and what you have is flat-out eugenics. These parents don't want to be bothered by the trouble of a disabled child. As someone else pointed out, why not just amputate all her limbs while they're at it? After all, Ashley doesn't "need" them since she won't walk. This is a very dark road these people are on, and I hope we can at least expose it for what it is. Just appalling.
So, I have a 5 year old daughter, and she tells me when she gets big she doesn't want to have kids cause she doesn't want to get a big belly cause it looks hard. So because my 5 year old tells me this, she won't need her organs...why not just get a hysterectomy done now? Let us save her the trouble of doing it when she can decide on her own, right? I mean, right now she would have no say in it. If these parents can do this to their poor innocent daughter, who has no say, why cant we all.
This story absolutely hits a nerve when I read it. I can't believe someone would do this for their own satisfaction. Lord help us now if her mother were to have to help her @ age 16 when she might weigh in at a hefty 80 pounds.
Point being...These parents are selfish, inconsiderate, and heartless. I agree that something should be done to them, as in some sort of charges relating to this. Gosh, if I smacked my child's butt and left a red mark social services would be called, but I guess that's a whole different case...something like that would be abuse. I hope something gets done about this, and hope it is done soon.
This has been an ongoing discussion on some boards I frequent. I am also surprised there isn't more of an uproar over this. On my boards most support 'Ashley's' parents. They understand why. I don't. Another friend said it was barbaric and inhuman. Amen to that.
I see my son's disability not as a burden, even though it is very difficult at times. I could never even think of such a thing!
I think all of the people on here bashing ashleys parents may not fully understand thier situation. So many of you say your have disabled children, but from what I have read, not NEAR the extent to that of ashleys condition. To be honest noe of you, NONE, have any right to say anything about thier choice. I have fully reviwed the details of what they have done and how it was approved. This was not a shotgun surgery approved by a few "crazy" doctors looking to expieriment. It was approved by a medical panel of over 40 advisors! One person on here compared this situation to that of telling her disabled son he cant go to college....what kind of stupidity is this! Ashely will never, ever, have a chance of even getting close to the quality life your son enjoys, after all at least he was the capacity to attend college, physical barriers be damned! I am ashamed at all of you. Everyone thinks they know whats right for a person, even if that person does not have the capacity to make her wishes known. In the end Ashleys parents have done the best thing they, and ashleys doctors thought, would benefit her quality of life most. Shame on you all for thinking you yourself are so much more qualified as to decide how much "potential" this child has when qualified medical doctors have already made an EXAUSTIVE diagnosis. And to the origional author of this blog, I hope your grandstanding for your 15 seconds of fame on CNN was worth it.
You know I completely agree with Ashley's mom and her physicians. Cast aside your personal beliefs and think about Ashley a girl with the mind of an infant how would her mind be able to comprehend puberty and getting her period. I am a normal 15 year old girl and it is hard enough for me much less Ashley. I couldn't imagine being in her mom's postion and what she really needs is support not everybody trashing her and her family.
AS A LICENSED PSYCHIATRIC TECHNICAN AND OVER 30 YEARS WORKING WITH THE DEVELOPMENTALLY DISABLED OR WHAT EVER THEY ARE CALLED NOW, I HAVE SEEN FEWER AND FEWER OF THESE CASES, WHY?? WOMEN CAN BE TESTED, IF THE FETAUS IS DETERMINDED TO HAVE A SEVERE PHYSICAL OR MENTAL ABNORMALITY, ABORTION IS THE CHOICE MADE, AN EXAMPLE, SOON DOWNS SYNDROME WILL BE A THING OF THE PAST. I AM NOT MAKING A JUDGEMENT ONLY STATING A FACT.
Thank you Shame on all of you!!! My feeling EXACTLY!!! I have a special needs child but he does have quality of life and I am blessed that I don't have to face the challenges that Ashley's parents have and I support their decision!!!
The only words to describe my current reaction are:rage and despair. I AM a disabled woman. I need help getting around at times. If my case had been bad enough that I wasn incapable of communication, would you all have been okay with someone taking away my right to be a woman, an adult and a mother? Really?
I am not at all shocked. Children in America have very few rights, and are regularly subject to abuse. Think about it, every year thousands of baby boys have parts of their healthy, perfectly normal penises cut off in a horribly painful surgery, just because their parents prefer it that way.
The typical response seems to be "gosh, the world has turned completely nuts nowadays." Okay, let's wind the clock back a hundred years, back when the world was happy and perfect.
Well, a hundred years ago, since Ashley can't eat, she needs tube-feeding. But, there's no tube-feeding possible back then, she dies, poof! There's no issues. Nobody worries about her "rights" because she's a corpse in a grave.
Consider that when you say "something is wrong with the world today", this is essentially what you're saying - you're saying "she'd be better off dead."
The real problem that none of you are seeing is that we have the technology to prolong Ashley's life, today - but we do not have the technology to cure what ails her, nor will we have it within the forseeable future. She can't sit up, she can't eat, nothing. She is literally an mindless, unmoving sack of flesh with a mouth, and will be until the day she dies.
We have a technology gap. We can keep her alive, but we can't cure her. Because of this, untreated, she's going to physically grow up, and mentally be an infant. That is the true source of the problem.
Rather than focusing your efforts on finding the parents so you can burn them at the stake, why not focus your efforts on funding the technology needed to cure children like her? Instead of bemoaning her fate, why not work to insure it doesn't happen to anyone else?
This is not an impossible goal. There are many charities who exist for the express purpose of trying to find cures for disabilities. Support them. Donate to them. Take your rage and anger at her parents and turn it into something positive - work towards a cure.
Spending your time posting "gee, that sucks" on a blog doesn't resolve the issue, and does nothing to prevent another Ashley from being born tomorrow. If you're serious about not liking this situation, then work towards finding a cure for it. This is, unfortunately, a situation where if you aren't part of the solution, you're part of the problem.
I absolutely agree with you, Karen... And as "Connie" remarks, there are plenty of us out in the disability world, but the media is (largely) ignoring our side. This entry by 'David' of Growing Up With A Disability both states it well, and also has quite a few links to others speaking up.
As for all of those people that are claiming she "doesn't know" -- first up, she can't talk and has little-to-no motor control, and a lot of people are wrongly assumed to lack intellectual capacity on that exact basis. Some of them find a way to communicate that others can/will recognize as legitimate; one autistic woman believed severely impaired intellectually was re-evaluated as having *genius* intelligence once she could type.
Second of all, more importantly, she can feel pain and surgery is painful long after a patient is sent home from the hospital. Her inability to speak means that she couldn't make her parents notice if she needed more pain medication, or if/when they were unintentionally hurting her, and more dangerously, if there was pain indicating something was going wrong. Her intellectual capacity, regardless of the assumptions you make, does not excuse needlessly making her suffer.
About the claims regarding parent "need" -- There is a lot of assistive tech for moving people with severe motor impairment, and while it isn't plentiful, there are a number of ways for the family to gain government/community assistance in other things. It is also entirely possible for a disabled person to live in a community home, either on a group or on their own with attendants, and the US government does cover that.
Have there been problems with disabled women being raped by attendants/others? Yes, as are physical and emotional abuse in such places -- and all of those problems desperately need to be confronted. *That* is how to handle the issue: find out information on past attacks, make sure the perp goes to jail, make sure the perp NEVER works for another similar facility/home again, ensure that if clients indicate assault in any way, that they are believed. Give those clients the exact same consideration and protection you would demand if they were typical girls living away from home.
Operating on a potential victim so theoretically they're less appealing to a rapist is the absolute *ultimate* in blame-the-victim mentality. It's also asinine because most rapists aren't aroused only by breasts in the first place (note she *will* still age, she will just look smaller). If somebody is that concerned about the possibility of rape, and feels that surgery is a good way to handle it, then why not perform surgery to ensure no employee can use a sexual organ (or, at the least, chemical castration) to rape a client? In their case it would even be voluntary!
Is it better for her own comfort? Well, I know that I've been friends with several women with breasts so large that they have to buy custom-made bras: they said it was uncomfortable standing up because it pulled on their back muscles, and not once has one mentioned laying down being a problematic position. One had a reduction surgery (she chose a C-cup, not mastectomy) but others haven't. So that excuse is out.
How about her discomfort from periods? Out of all the women I've known, most of whom did grumble if they had cramping, none wanted to have the uterus removed, most only had a day or two of discomfort, and they were able to treat *that* with a heating pad or OTC meds. This includes a lot of childfree women that had chosen tubal ligation or had other forms of (intentional or otherwise) sterilization. So, this doesn't make sense either.
As for the comments against the idea of judging the parents... The whole reason our nation has laws to protect children from neglect/abuse is because there is a *need* for it. Being well-intentioned or loving a kid does not mean a parent will come anywhere *near* what is best for the kid.
This is something anyone with parents that were (even well-meaningly) abusive or neglectful can attest. One doesn't have to intend harm to do it, even in medical choices... It strikes me as quite wrong that the willingness of others to criticize a parent, past genuine medical necessity, depends on what their child's body looks like.
Finally, as for the "well, you can't know" -- that's not always the case. Plenty of parents of similarly disabled kids (or adults!) out there right flipping now are writing out clear disgust at what was done. They would know. Those of us that have friends or a sibling with similar disability know. Those of us that have a similar disability, or that have been treated in the same manner, know. Just because we are not those specific people in that specific case doesn't mean we are clueless: if that was sound logic, we couldn't have a judicial system as nobody could ever judge anyone else.
For those that think that only someone that has never done anything wrong can judge, or that people are wasting their time:
When the Nazis came for the communists,
I remained silent,
for I was not a communist.
When they locked up the social democrats,
I did not speak out,
for I was not a social democrat.
When they came for the trade unionists,
I did not speak out,
for I was not a trade unionist.
When they came for me,
there was no one left to speak out.
-- Niemoeller
(one variant of it)
Ok first of all I have address this "This opens doors that we cannot possibly go through if we are going to be a pro-life, christian, family oriented country"- freedom of religion in this country. We are full of Muslims, Buddist, secular humanist, Unitarian, Hindus, wiccans and many other religous sects. Pro family you mean men and woman only for parents no same sex. I find these statement already that you are narrowminded brainwashed Christian whos values are limied by a book written 2,000 years ago in a culture that no longer exists.
To Ashley. Ashleys mind is stuck in an infant like state and so her body should refect that. As a disabled person myself and being on disability and being a burden to societies tax payers I find it humulitating that people fight over weather to cut my social security check or not because someone who can work resents that I stay at home all day for free. I hate being a burden on society but I cannot work until I have repaired enough of my emotional damage caused be abuse and neglect from a raging alcholic mother. I have been physically, verbally, emotionally and sexually abused as a child and neglected. None of you know what true abuse is!! How dare you mention abuse when you have no concept of the suffering and torment that true victims suffer. I don't want to be a burden to society and if Ashley was mentally capable of comprehending the situation she would not want to be a burden on her parents. It is clear that her parents love her. Ashley need compassion and love and being near her parents to comfort her and if keeping her small to allow this I am all for it. Ashley mind is stuck in an infant like state and her body should reflect that.
And as for God or your concept of him. He (if indeed it has a gender which I doubt)God made intellegent enough to ease peoples suffering and to medically change our bodies such as eye laser surgery, glasses ect..How do you know that God did not give humans the ability to change the way god made us. Are you against all the things that we do to our bodies that is different than we were given at birth?
You extremist Christians are just extremist Islamist...you are narrow minded cruel and judgemental and you think everyone should live the standard that you hold you life to because of a book.
Having seen the substandard care older people receive in nursing homes and other long term care facilities, I empathize and support the decision of Ashley's parents. Most medical "professionals" in these places do not consider the residents there as human beings, but as bodies and a means of earning a paycheck. I watched my grandmother go from a viable, living person to a bedridden piece of flesh riddled with bedsores due to inadequate care. I praise the parents of Ashley for doing what they feel is best so that they are able to keep her at home. She has a much better chance of living with some quality in her present state than if she were to have all her female parts and need to be in a home due to their inability to manage her. Only those who have to do this can truly know the challenges. Most activists will march for any cause just because they need to feel valuable and like to be heard. Perhaps they can better spend their energies helping a family such as Ashley's with caring for a loved one. This would be a nice way to show true concern and help those who need it most. And not just for an hour once in a blue moon. I work with children and understand the hardships parents face when trying to find respite, etc. God Bless Ashley and her family.
This is such a strange story. I read the whole Ashley website and your blog with comments about it. What I keep coming back to is that I can't judge what these people have done unless I've walked a mile in their shoes.
On one hand, what they've done goes against the laws of nature, but so does so much of what medical science does today. On the other hand, Ashley may in fact have a better quality of life.
I do have to say that I find the term "Pillow Angel" to be sickening. Like she's an inanimate stuffed animal or something. But, again, I don't know what terms I'd use or how I'd feel if my child was like Ashley.
Most of us in this world do the best we can. Some people are evil and self serving, but I don't think Ashley's family falls into that category.
I feel a lot of emotion has been directed towards the parents, but as a medical student at an academic medical institution, I am actually more disappointed in the physicians who agreed with her treatment. I do not understand how a physician can perform these operations on a child with so many preexisting challenges. Although it is true that removing the tissues would reduce her future weight and size, possibly improving the ease of living for both her parents and herself, I can't see why the doctors would subject her to the RISK, PAIN, and physical deformity associated with the surgery itself. Regardless of the outcome, surgery itself is a traumatic experience, especially a radical hysterectomy for a child who probably cannot adequately express physical pain or display the post-surgical discomfort. My own mother had the treatment option of a hysterectomy a few years ago due to uterine cancer, and that in itself was a difficult decision to make even in the face of a fatal disease. I cannot see how the physicians can so easily perform these surgeries out of "ease" or convenience. I think the bigger question is to think what Ashley would want if she were able to understand the situation and express her opinions. If you were a child with such pre-existing developmental difficulties that separates you from everyone else, would you want a treatment which only further distances you from those around you and having a normal development? Lastly, many argue that she will not even notice or miss puberty and her uterus. But you must also realize that she may not notice if you ridiculed her to her face or (to the extreme) performed euthanasia, but her unawareness does not make the action harmless or acceptable in the least. There are just so many reasons why these surgeries should not have been performed that it is impossible to finish this in one comment, but I hope physicians, new and old, learn from this event regardless of the outcome.
I really don't know what to say. I am not someone to say that what Ashley's parents did was right or wrong. I just wanted to state my opinion. I have a disabled daughter, and I have to say being a parent of a special needs child is very hard. If you loved your child, no matter how hard it is to take care of them. Wouldn't you put in the work that was needed? even if it means not having a life? It's kind of like asking, "would you sacrifice your life for the life of your child?" That is the way god made her. Why would you want to change her? I believe that God doesn't give you anything you can't handle. Why do something (I believe) is so wrong when you don't absolutely NEED to? Yeah it's hard, but if you really wanted to you could have put in the work instead of making things easier for you. Every child (and adult)have a chance of being molested, and for females getting pregnant. Does that mean the parents of children who are scared that it will happen to their child have the right to remove their childs uterus? Someone else made a very good point, she will never have any use for her arms or legs so why not just remove them? I wouldn't do anything to my daughter that I wouldn't want done to me. My daughter does not speak, but when it comes down to a decision I have to make because she can't make it for herself, I ask myself, "What do I think my daughter would tell me she wants me to do if she could talk? What would she say?" I don't believe in just taking the easy way out, if it's hard, just DO IT! OWN UP TO YOUR RESPONSIBILITIES AS A PARENT AND JUST PUT IN THE WORK! I love my daughter very very much. I don't know what I would do without her, and even though it is hard work taking care of her, and I get so stressed out and tired, I sometimes even fall to the floor and start crying for no reason at all, it may be just because I am tired. I get back up and keep at it because I love her and she is worth it. I put in the work that is needed to be put in, because IT MAKES ME FEEL GOOD WHEN HER DOCTORS AND MY FAMILY TELL ME THAT THEY'RE REALLY PROUD OF ME AND GLAD TO SEE HOW WELL I AM TAKING CARE OF MY BABYGIRL. My own mother told me that she thought I was gonna be a good mother for the first few months. The most a year, because she seen how hard it was for me and how tired I always was. How I just gave up everything and took care of my child 24/7, I was only 15 years old , but I did it and proved her wrong. I am 22 and my daughter is almost 8 now and my mother tells me that she is proud of me.I could never, ever do something like that to her. If I convinced myself that it was the best thing to do and actually went through with something like that, I don't think I could ever forgive myself.
Having worked with fellow humans whom communicate even in the face of challenges equal to Ashlees I think of Jesus saying "Father forgive them they know not what they do". Everyday I learn how little I know about these people I have had the honour to serve. Professional arrogance once allowed me to KNOW who was capable of communicating and who was not. 25 years later I KNOW NOTHING. Compassion and humility have become my best teachers. May Ashlee and her family be shown compassion and humility.
My cousin, severely disabled with CP, lived to the age of 24. Though she couldn't walk, talk, sit up, etc., her parents had special chairs made so that she wasn't a "pillow angel," her sisters helped care for her and she was a blessing to us all. She matured as she was supposed to. Had any of us suggested that she was anything but a blessing and a gift, just the way she was, we would have been met with, well, I can't imagine. But then she was with a family that loved her. And that's obviously what's lacking here. This child should be removed from the home. The parents charged with abuse and the medical community brought up on ethics violations. Are we in Nazi Germany where the disabled can be used this way?
As a full time caregiver to my nearly bedridden 5' 11", 240 lb. husband, I was appalled to hear of Ashley's story. As one person put it, it is "no walk in the park", but the thought of altering my husband to make it easier for me is insane!! I want my husband--who is terminally ill-to have the dignity and respect he deserves to the very end, not only as my husband, but as a human being as well.
Why does someone need to be a CHRISTIAN to think this is an appalling, dehumanizing process? Jews
and other nonchristians can be decent human beings too. And I wouldn't be at all surprised to learn that Ashley's parents and the so-called medical eththicist consider themselves to be christians.
Why does someone need to be a CHRISTIAN to think this is an appalling, dehumanizing process? Jews
and other nonchristians can be decent human beings too. And I wouldn't be at all surprised to learn that Ashley's parents and the so-called medical eththicist consider themselves to be christians.
Why does someone need to be a CHRISTIAN to think this is an appalling, dehumanizing process? Jews
and other nonchristians can be decent human beings too. And I wouldn't be at all surprised to learn that Ashley's parents and the so-called medical eththicist consider themselves to be christians.
What if a few years from now they can treat Ashley's brain condition? What if she could develop to a higher functioning condition? What if she could develop to the equevalent of a 2 year old? 5 year old? 12 year old?
At what point would those that agree with the treatment consider it wrong?
The parents obviously love this little girl and want to take care of her. What use is her "adulthood" going to be. Mom and dad wil be able to care for her much easier if she's small, so thye chose to keep her small. The argument that we should make her a quadraplegic is just emotional nonsense, spouted by a hyper-religious neo-con. Please use your common sense vice your emotions when looking at this issue. And Karen, nobody touched her mind, and there is a real good chance that she's not playing women's basketball.
I definately have to agree with this person. You waste absolutely no time bringing up the Schiavo case, do you? It's like the new 9/11.
Ashley's case was looked at from an ethical standpoint before the operations were performed. There's no real parallel between a hysterectomy and a surgery to chop off her arms and legs, and bringing up the subject makes you look like an absolute hysterical nutjob. Of course there's a difference. There's no 'slippery slope' or whatever you want to call it. It's a decision that was carefully planned by the parents and Ashley's physicians.
I also note that a lot of the people complaining about the surgery have disabled sons. The reproduction system in a woman is far messier, and in Ashley's case, completely unnecessary. I don't think that you can draw a parallel when you're talking about caring for your disabled boy.
I was pretty disturbed by this story. But I've also been pretty disturbed by the responses, on both sides of the issue.
Why is it that we can't discuss these topics without all the hyperbole? Why can't we say, "These parents and doctors made a bad decision, here's why" without resorting to "throw them all in jail, for abuse and malpractice"? Or "she's just a vegetable, why not let her die." Has all the air gone out of the room? Are we suddenly unable to hold anything other than an either/or position?
Ashley's case is difficult. Yes, she has been infantilized. But to compare her situation to a high-functioning CP college student is disingenous. Her parents made a value-based decision, putting their value of Ashely's and their comfort and safety over the value of her human dignity. i think what they did was wrong. But I do not doubt that their intentions were good. Nor that their love for Ashley is sincere. People who are willing to call them mutilators or worse need to reconsider. There are children (and adults) out there who never received the amount of love and attention that Ashley does. So to suggest that her parents are horribl, evil people because of their misguided logic in addressing Ashley's situation is not fair.
You have no more basis for your assessment that their "intentions were good" than others' that their intentions were bad. You don't know them either so you're guessing. I happen to think their intentions and their actions were not good and that stunting even an animal's growth to make it more manageable is wrong. Since the child can't communicate, no one knows the side effects of these surgeries and drugs. Especially hormones, which can have devastating effects even on grown women for whom they are intended! Mutilation of a child IS an emotional hot button, especially a helpless child. And it should be.
In discussing the procedures that Ashley has undergone, the infamous "Ashley Treatment," the parents state that the high-dose estrogen is safe and that the breasts were removed for comfort and to prevent breast cancer. A couple of minutes on google will confirm that there have been no studies that affirm high-dose estrogen is safe. In fact a woman that received high-dose estrogen as a teen to stunt her growth is a leading advocate AGAINST the practice claiming a myriad of lifelong side effects. It has never been approved by the FDA for that purpose though it isn't illegal.
Also the removal of breasts is no guarantee against breast cancer as of course the doctors know breast tissue is present from the waist to the neck area not just in the two breasts. The parents also claim that various procedures were done to (1) prevent pain because she easily becomes uncomfortable and also because (2) they won't know when she's in pain because she can't communicate. Which is it? And finally, they want to avoid her becoming "sexualized" so that she won't be the target of molestation. When has the presence or absense of mature sexual organs stopped molesters? Children are often molested and also often the preferred target.
It was surprising to see that Ashley attends school. I would imagine the children in her school are of various sizes and somehow the teachers and administrators deal with that.
What's next for her? How will the "Ashley Treatment" of which the parents seem so proud, evolve?
And finally, the poster mentioned that boys hadn't been part of this equation. Would he object if a boy was castrated and stunted for the same reasons?
I have worked with disabled children and adults for over 30 years. I have been blessed with two non-disabled children. I cannot as people say know what it is like to have a disabled child with all the accompanying challenges. However my profession has allowed me to cross paths with many hundreds of people who have met the challenge without mutilation of these persons. The idea that no individual can grow intellectually is specious and conflicts with every professional organization of which I am aware. I can only wonder why the State of Washington did not have a representative from the Office of Protection and advocacy in conference with the decision makers. I must make that assumption because any such person in a civilized country would have certainly have scoffed at such a suggestion that the Ashley treatment would be proper. In my state there is a statute that mandates prompt and appropriate treatment for individuals with mental retardation (unfortunately, this is the nomenclature still in use). What were these people thinking?
I am the mother of a 4 year old autistic son. I thought I was going to be physically ill when I saw the article on the "Ashley Treatment". What shocked me even more was the number of people who have supported this. What in the hell are people thinking? I agree those who have children with disabilities had better start protesting this kind of thing, or it is going to start happening with alarming frequency. It seems in this country those who are "not perfect" are treated like garbage.
I shudder to think of what this is all leading to.
You're so right. If people can't handle their disabled child, for heaven's sake -- they should put them up for adoption, or put them in a permanent care home. Not OPERATE on them. God, it burns me up when people just want things to be easy for their own convienience. What about the child? She'd probably be MUCH happier as a fully intact woman and in a care home -- well away from the psychotic parents. Besides, this 'therapy' probably has extended her lifespan. Did SHE get a chance to participate in that decision. I doubt it!
I read a post on the Women In Media News blog (http://www.wimnonline.org/WIMNsVoicesBlog/?p=377) that quoted a reporter from the Times of London (no less!) saying that before you started getting all worked up about fundamental human rights, you should think about how you'd feel if you had to change your daughter's sanitary napkin and I boggled. I'm sorry? That's a legitimate argument to suspend *fundamental* rights?
I also had a physical reaction to this, almost losing my breakfast when I read the story. I have a disability - use a wheelchair because of lifelong arthritis - and felt the threat keenly. If this is OK, where would it stop? If they can make the argument that it's more "appropriate and dignified" (on Larry King tonight) for Ashley to be in a child's body, given her developmental stage, then what's next? Making all developmentally delayed children into little Bonsai Kids (hey, there could be t-shirts! A club! A telethon!!)? What about people like me? Amputating our legs? After all, it's not like we're using them much...
We're not worth much in this world and it sickens me.
I am a disabled woman who has two children with autism, so you can take this as 'a voice from the disabled community' if you wish.
I prefer to think that there is a *wider community*, and not a *disabled community*, and that we all have differing levels of ability in all areas. I choose not to recognise my disability as anything other than limitations that any one of us might experience (unless you have a PhD in both mathematics AND english, you can put your hand down whilst objecting to this). In the Australian Aboriginal language, there is no word for disability.
For those of you who protest that you are Christians, shame on you. (When I hear people saying they are Christians, I think of that quote...'You're a Christian *already*? Seems like a lifetime of work to me!') I don't recall Christ sanctioning child mutilation. Nor, for that matter, sanctioning making decisions on people's ability to comprehend dignity, and using that as a basis to remove all human rights.
What Christ sanctioned (according to the Book) was *love*, and none of us can doubt that her parents love their child. But this does not make this decision in any way right, although it is couched in the kind of disability-speak that makes me want to vomit. How far would they go? As far as other parents who have taken it upon themselves to kill their profoundly disabled children based on their 'love'?
Google *that* little chestnut for a while, and see how many parents - well meaning, well intentioned parents - have decided to take the plunge and murder their own little 'pillow angels'. Interesting to note how many well meaning, well intentioned juries then let the parent off with a slap on the wrist. 'They have suffered enough', they say.
Heres a link to a Sydney news report on a woman who smothered her 10 year old autistic child, and was let off with a good behaviour bond.
http://www.abc.net.au/worldtoday/content/2004/s1121503.htm
I wonder what would have happened if the woman had smothered someone *else* in a response to her care-giver induced stress? Would she have been given the same sentence? Of course...otherwise the jury would have been making a value judgement on the worth of the child's life. Hmmm.
Lets take it a bit further. The Church draws outrage when they say that severely disabled babies should be killed at birth. http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=416003&in_page_id=1770
The example of a quadruple amputation was an excellent analogy. Should we further remove the ears of the deaf? They do not require them. The eyes of the blind? They could be subject to conjunctivitis. Of course, that would be ridiculous. Why? It is the same analogy, if you believe in human rights. Why is that idea so abhorrent to us? Perhaps because that would render them *different*, whereas Ashley's mutilations are all hidden for the world to ignore.
I don't know how old Ashley will live to be, but I can imagine nothing more grotesque than a sixty year old woman who has been kept to the hormonal level of a nine year old girl. Oh, perhaps one thing more grotesque - an entire community of people saying it is okay to mutilate a child because they are disabled.
Dear Nufsaid,
Is the fact their life is easier what makes you so mad? The more you go through in life does not make you right or better. Nothing they did changed one thing about Ashley. They made her more comfortable for the future. I think you hate it's not you.
This will rage from now until the end of time. I refuse to call it a debate. A debate is healthy. The Ashley Treatment, and it's discussion makes me physically ill...
First Off: Yes, The world HAS gone completely nuts! --- There are people out there who actually believe this trash: It WAS perfectly acceptable to put Ashley through all of these surgeries because --- [insert lame excuse here!] . . .
As a woman with a disability I've often been asked, "Unless you're a 100% certain you want kids why not get a hysterectomy?"
What? Are you serious?
Come on people! Why in god's name would you remove healthy organs? Just because I [may] never use them. *SARCASTIC: Oh, that makes perfect sense.*
Yes, I agree dealing with monthly cramps can be very unpleasant. But surgery to alleviate discomfort? You're kidding right?
Oh, and to the aurgument that some people have made: Breasts will make Ashley more attractive to sexual abuser(s). Please, listen to the comments about sexual predators. Those people are correct.
In a nut-shell: A helpless "girl" that can never become pregnant, who cannot speak, who appears to be a child but is "of legal age" would seem --- to a horrible, hideous, sadistic, bastard --- a dream come true.
Add to that fact that the parent's care so little for their "pillow angel" (disgusting term!) that they did not even bother to blurr her face on their web-site.
Anybody who has seen their site, knows a little about tracking a person down through clues that everybody leaves on-line, and is a sick pervert could easily find Ashley.
If the parent's love her why didn't they even bother to protect their daughter from on-line predators?
Are they completely clueless? Do they assume that their child would have to "get on-line" herself to be targeted?
*SNORTS IN DISBELIEF*
That must be it!
If the family cared for her they would never have put their child in danger from internet predators who now know the whole story about Ashley.
Truly, if they (her parents) loved Ashley they would never have treated her as some"thing" --- (*Don't forget THEY used the term: "pillow". Last I checked a pillow was a thing.) --- Less than human!
In our society we spay our pets to prevent unwanted pregancies and cancer.
People are not pets though. Even a PERSON with a disability is NOT a pet!
And last: People expect life to be easy. I have no idea where they get this false idea. Maybe my life-long disability has given me a better prospective?
I've always known that life is supposed to be difficult so that a person will learn to rise above the challenges --- that life throws at them --- to become somebody better.
It is so sad that Ashley's parent's had the chance to become better people, but failed miserably.
More than that: It is even sadder to see that so many people look at these parents, and instead of rising above their attitude, and learning from such selfishness to become better people --- They too fail!
These people, with their pettiness they know no boundaries when they attack the very people who defend Ashley, and all people with disabilities.
It breaks my heart!
Just a quick bravo to this brave blog. As a disabled person, I am outraged and in shock. Because of moms like this one, my disabled kin, and caregivers who've spoken out - I am thankful and called to action.
While every person must use humor, even outrageous humor at times to deal with our disabilities or of those we love.... even calling their child a "pillow angel" makes me sick and reveals what they think of her.
Why not just skin her and stuff her -- so they can lay on her or prop her on the couch. Slap some angel wings on her back. Then she'd finally "live up" to their obviously disgustingly low expectations.
Who KNOWS what technology might unlock in that beautiful brain of hers one day. I hope when it does, after she loves on her parents a while, she looks around and asks them, "what the hell did you do to my BODY?????"
Thank you again for the thoughtful blog, the thoughtful responses (mostly) and for those lumbar . . when I make my first millions, I will buy you some new ones. Love, Greg
This is in regard to intellectualworrior mindless ramblings which make s me wonder were is the intellect,and as for you saying your disabled that is a joke you don't know what disabled is until you have a real disablity,I am physicaly disabled with a severe back injury and have not worked since 1999 so dont tell me you are disabled because you are not.And your a full timed student beacause your just to lazy to get out and get a job and work. And to justify what Ashleys parents had done to her is so shameful and appalling ,you should maybe go and crawl back under the rock to come from under,because anyone that condone it is really pathetic. What they done to her is nothing more than Abuse of a innocent child done for the parents convience and thats all with no thought or regard for the child herself.Because abuse is abuse no matter how you try to justify it it is still abuse and just plain wrong no matter what pathetic excuse you try to use to justify abusing a child.
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