In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.They call her a "pillow angel" because "she is so sweet and stays right where we place her — usually on a pillow."
Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.
"Ashley has no need for her uterus since she will not be bearing children," they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it...
The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.
"If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity," they said.
"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."
MORE: Here:
"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."
The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine.
Posts
25 comments:
There are a lot of people now who try deliberately to get a deaf child because they are deaf, or try to get a baby with a specific disease so they can share it.
But this is the very worst thing I've ever heard. These parents should be horse whipped.
Child abuse.
They don't know what the side effects of all of this will be. Law of unexpected consequences. They don't know what the child's cognitive abilities are, or will be.
All the parents have are doctor's opinions. Fallible Doctor's opinion's I should say.
Anyway, I don't/wouldn't believe a word these parents say, so my mind is already made up.
This is all about the Parents need for experimentation. Not doing anything for the child except harm.
Child abuse, and nothing and nobody will convince me otherwise.
Parents just won't let their kids be.
Peace, Maxine
I can't believe how harsh you two are being!
I read the BBC article and thought the parents' decision was extreme, but also thought they made a couple of good points. First, as a smaller person she will be easier to care for--which means she will get better care, especially if her parents predecease her. Second, that not having a sexually-mature body will decrease the chances she'd be sexually molested, again, especially if institutionalized.
I do not think this is analogous to deaf parents wanting a deaf baby. I do think these parents did what they thought best. Would I have done it? I pray to God I never have to find out.
CHICAGO (AP) — The power to create “perfect” designer babies looms over the world of prenatal testing. But what if doctors started doing the opposite? Creating made-to-order babies with genetic defects would seem to be an ethical minefield, but to some parents with disabilities — say, deafness or dwarfism — it just means making babies like them. And a recent survey of U.S. clinics that offer embryo screening suggests it’s already happening.
Just like me?
Child abuse.
Plenty of parents have impaired children, you don't see those parents engaging in the type of horrors these parents are.
These are the very first parents to do this....and brag about it via their blog.
The Doctors are in it for the money, too, and couldn't care less.
I wouldn't be surprised if the Parents are getting kickbacks by promoting the evil doctors who are encouraging this type of abuse.
I hope the parents are investigated. It's sinister to do this.
Let the child be.
Peace, Maxine
I wish I could get worked up into a royal snit over this one, but I can't.
I have two retarded brothers. They're fully functional, but life can be very hard with them. I have cared for kids and teens who were far more impaired: immobile, mute, barely interactive.
Would I do this? Probably not. I tend to rely on playing the cards you were dealt, and trying to find some meaning in that.
While this bothers me, I have a hard time being too condemnatory. The lives of caregivers can be very hard, and then you begin to worry that you'll not outlive the disabled one, and what's going to happen to them? Who will care about them? Damn, it's hard. It's so a worry so deep it makes your heart ache.
There but for the grace of the flying spaghetti monster go I.
The God we know wants Ashley to have a good quality of life
Yeah, so He created her to vegetate for 50+ years before He gets around to finishing off this magnificent example of His beneficence with terminal bedsores.
Euthanasia is the only decent thing to do here. I don't blame the parents for not seeing that, but the fact that the vast majority of people--and society as a whole--don't see it, is very saddening.
Pogo, I think we have a lot in common. I have a sister with mental retardation. I have worked six years in community homes for people with developmental disabilities. If you work in the field or have a family member who may one day live in group homes then you hear the horror stories. They aren't common but they aren't vanishingly rare either. It is terribly frightening to consider the day that you will no longer be able to care for your loved one and leave them in the care of the state.
As to the size issue. Often immobile people tend to be overweight. Just a fact of life. Have you ever tried to change the diaper on a 240 pound immobile man? I have, many times, it can be difficult. Even a full grown woman who isn't overweight can be a major chore.
I wouldn't do what these people have done. I find it repulsive and abhorrent. But, I can't find it in my heart to condemn them for it. If you live in this community and see what we have seen their points become very real.
Should the day come that we can cure this little girl's mental deficiencies? Well, by then they'll be able to reverse what her parents are doing to her in their attempt to protect her.
BTW, my background is a major reason I could never support pure libertarianism. I can't imagine a world without government help for these people who really, truly can't care for themselves.
God forbid ANY child (much less a severely disabled one) have to live with parents who do not believe in or pray for a Miracle -- and do their level best to prevent one from ever happening.
Commenter #3 says "Yes they do, she's a retard, she always will be"
Only a very young and naive person, who has not lived through the medical advances I have seen in my own 40 years (which is still pretty young nowadays), could say such a stupid thing.
I'm with commenter #1. I'd horse-whip these two and ask them "didn't YOUR parents treat you better than this????"
Simply appalling. And cruel.
Even commenter #5 says:
Does she need periods--is there some grand purpose to her bleeding every month or, God forbid, her being abused resulting in pregnancy?
Sweetheart, even the children of sexually abused women are loved by God, and valuable human beings in their own right.
God forbid that parents be allowed to sterlize their own children, simply because they do not want to become grandparents.
Please pray for Ashley, and hard as it may be, pray for her parents too.
Pogo:
God bless you and your parents.
After my dad died, my mom spent 30 years teaching special needs children, many of whom were retarded and some severely so. While she loved the work, and the children she taught, the day to day challenges were very difficult and many of her stories about the lot of these children were heartrending.
Your comments, Pogo, reminded me of her compassion and empathy for her charges and their parents.
Gerald Hibbs:
Your comment was not up when I commented. What I said to Pogo goes to you, too.
Thanks for your voice of compassion to this most difficult topic.
Like Gerald and Pogo, I have first-hand experience with developmentally disabled children and adults. I have a brother with Down syndrome and have worked with developmentally disabled adults with varying functioning levels.
It is far too simplistic to see this as an either-or issue or label it child abuse.
Assuming these parents are sincere, it is not easy to know what the right thing to do is. It is probably difficult to know with certainty whether this child would benefit or suffer by maturing.
The disability rights movement is important and has many benefits. Getting disabled people more rights is often a worthwhile goal. However, at times obtaining rights has no beneficial connection for the disabled individual and may even be harmful.
Within reasonable parameters I think we should let parents judge what will be best for their disabled sons and daughters. They know them best. The article didn't discuss the risks vs. the benefits of the treatment. Assuming no outrageous risks or side affects, it doesn't appear to me this choice should be prevented.
"Don't you think there are enough decent people who would willingly take care of the helpless? Or would we start leaving deformed babies and the elderly on the hillside to die, just because there was no tax money to care for them any more?"
Lest you forget, there was a day that that is precisely was we did. It is all too possible that there will be a day where we return to those ancient practices. It is only because of our amazing wealth and abundance that we care for the developmentally disabled as we do. Those who want to take actions that endanger our economy are putting this populace at risk. I couldn't be a Libertarian, but I also couldn't be a Democrat or anything to the left of centrist.
As to the rest of your comment. . .
The company I worked for a private company and had substantial private donations as well as government funding, but without state money it would have been awful. Even now there is a multi year waiting list to get into group homes, at least in the states I'm aware of. Even now, with state money, there is a lot of need, hardship and difficulty. My mother moved with my sister to a different state recently and has had to get on all the waiting lists yet again.
Talk to me about private charities all you like, but they aren't cutting it right now. How would taking away the government money magically make that change? In fact, the last decade has seen repeated budget cuts for this population in Kansas. I know for a fact that money didn't appear out of thin air to make up the difference. These are the people no one wants to live in their neighborhoods! Take them into a restaurant and outraged people will become angry and complain. And you expect them to give money to care for the developmentally disabled? Yeah, right. Everyone wishes they didn't exist and doesn't want to think about them. There are exceptions, but mostly if you don't have the situation in your own family then you don't give a rat's ass.
Remember, we are not talking about people who are merely mentally ill or even just lazy. These aren't people who could take care of themselves but refuse to. These are people who cannot feed themselves or, often, even bathe themselves. Many I've dealt with cannot even turn over much less dress themselves. I refuse to play games of maybe with these people. I suggest that if you had seen what I have seen then your opinions might change.
Re: "Don't you think there are enough decent people who would willingly take care of the helpless?"
I'm with Gerald and vnjagvet here. (And it does sounds like we've walked down much the same path here.)
There are many beautiful moments in such lives, ones that seem ugly to an outsider, and there's alot of pain. I disagree with these parents, but I cannot hate them. I would do it differently, and hope is an ally, but cruel reality often says 'no' to hope, and the burden is not lifted.
Because the real unspoken fear is that the answer to the question posed here is "No, there aren't enough decent people (or there might not be for my child)." And then what? It's where you think "dammit" Just, you know, dammit.
One day my retarded brother and I went to play in the park, he just a year older than I, and I was in charge (a 4th grader) of keeping an eye on him. My Dad read the paper nearby on a bench. Suddenly, Tom was surrounded by boys yelling at him, ready to fight; he was petrified, still. I didn't know what to do.
My Dad came storming over "Whatthehellisgoingonhere!" The biggest boy, a 7th grader stammered, "He's actin' stupid" I had never seen my Dad enraged before. He spoke slowly: "You have five seconds before I crush your skull with my hands... ONE and the boy ran off, as did the others. Dad was quiet while we walked home, Tom laughed, and I knew then what ferocity lay just beneath a parent's love for his child, and how he'd do anything to help him, protect him.
And I learned how terrible people can be to the disabled.
It doesn't solve the problem, I realize, but shouldn't the fact that none of these choices are of any meaningful consequence to the directly affected party, temper the hostility toward her parents, or anybody else?
And if we're going to chastise anybody for not believing in magic, maybe we could start with the people who believe that permanent brain damage will be medically reversible before the hysterectomy is. Or is it only the parents who are morally obligated to believe in magic?
Put me in the category of understanding why the parents did this. I don't know if I would do this if my kids were similary situated, but I know they're doing the best they can in an impossible situation.
I admire those of you who can speak freely about the reasons you support the parents.
I find using the term "retard" to be offensive. Please do not use it, it demeans people who have birth defects. It is very offensive and inappropriate.
It is interesting that some of the discussants are writing as if they know the internal motivations of the parents and the doctors. How do you know their motivations? Are they your neighbors? Maxine, what do you base your assertion that the parents are experimenting and the doctors are just interested in money on?
It looks like massive projection on your part. But I have been wrong before!
Trey
I give only a sliver of understanding to the parents. 98% of me calls this child abuse, eugenics, and short-sightedness. Who knows what advances may come in this girl's lifetime that could improve her mental and physical ability.
For more comments, please visit my blog post on this:
http://angrylabrat.blogspot.com/2007/01/forever-young.html
.
I wonder if the parents are seeking Brownie points for not simply “putting her away”? Maybe they could get an authentic Princeton professor to argue for that?
Have we heard from the folks who valiantly oppose clitorectomy for African girls? Or perhaps something about societies who bind girls’ feet or extend their necks or is this considered more like orthodontistry?
I wonder if the parents are seeking Brownie points for not simply “putting her away”? Maybe they could get an authentic Princeton professor to argue for that?
Have we heard from the folks who valiantly oppose clitorectomy for African girls? Or perhaps something about societies who bind girls’ feet or extend their necks or is this considered more like orthodontistry?
Daryl you are the moral equivalent of the Ku Klux Klan.
Ann, with comment moderation on how can you approve what he is writing here? If he were talking about [insert racial slur] would you approve his comments? I doubt that "Yes, they do. She's a [slur]. She always will be." would be approved by you.
Daryl uses "retard" to remove this girl's humanity, no fuss no muss time for a postnatal abortion.
Sorry, no jovial one-liners when facing absolute bigotry. I thought of posting “Daryl’s right. Kill the retards.” But some viewpoints don’t deserve satire.
I guess mom and pop can also dress her up as a Lawn Gnome in the warm weather of Spring and prop her up in the garden right next to the plastic pink flamingoes and the tire planter with the ferns inside ? OvVey this story is begging to be made into a future SouthPark episode.
Post a Comment