Stunting growth of disabled child

Great Debates
61

I heard the Ashley Treatment story on NPR last week too, and my reaction was “Thank God there’s some help for these parents.” I’ve wondered (not often, I’m as oblivious as the next person) how they manage, when the child gets too big to handle.

The only severely disabled child I know might have had the treatment. I don’t know though, and I’m not going to ask her mom. We’re close, but I just listen – I don’t ask questions. The baby was premature, 2 pounds 3 ounces. Cerebral palsy, blind, deaf, feeding tube, all that.

I moved across the country when she was about three months old, so I never spent any time with her, but her mom sent me pictures. I’ll never forget this one photo.

There’s Judy (not her real name), six or seven years old and maybe the size of a three year old, laying in her chair. The sun is shining on her face and she’s beaming this huge smile. Mom captioned the photo: “We had a good day today.”

She died about two years ago. She was sixteen, and as far as I know, the only progress she made was the occasional smile, and to snuggle in close when she was being held. I’m sure her mom would have liked to send me Judy’s prom photos, but I think the sun and the smile brought just as much joy to her parents.

62

@Deaf Geek
You obviously misunderstood what I said, and took slightly back handed complements as insults.

63

Whatever FRDE…you still haven’t responded to our real comments. There’s a HUGE difference between someone with mild developmental issues, and the girl in the OP. I realize that your relative was extremely affected, but you know what? Even for a profoundly mentally affected person, your relative was on the very profound end of the spectrum. Also, she was probaly more affected b/c things like education and intervention, for profound kids wasn’t even in existance then!
I do think that the stigma of putting a kid in a nursing home or a home school for extremely affected kids, should be removed. There’s just this mindless idealism of “home”/mainstream community as the best placement ever.
Just b/c a kid lives away from home, it doesn’t mean that their parents won’t be involved in their lives, or that the parents are “dumping” them there. It IS hard taking care of someone with profound issues day in and day out.
I know that the parents are still very pro let Ashely live at home, but that could change drasticly over the years.

64

I shall make two points.

  1. If you have an IQ of 90 then I am a chimpanzee - somebody is pulling your chain.

  2. My cousin and that Ashley ‘pillow angel’ are/were just chunks of dead meat, they might just swallow, and they sure as heck excrete, but they are/were not human.

You pass the Turing Test - they could not.

I’m a bit surprized, most people who consider themselves genetically defective, have a pretty harsh view of things. They don’t like others having the same sh/t.

I had no intention of insulting you - which I suspect you now realize.

65

Well since I’ve had numerous IQ tests over the years, I don’t think anyone’s pulling my chain. And actually I think although not 100% sure, that my IQs in the upper 90’s. I know that my verbal IQ is off the charts, but my nonverbal IQ isn’t too high.

Maybe your cousin, but Ashley does have some awareness…She’s not in a PVS…she’s simply three months old mentally. Three month olds can and do interact with the world…and they are human!
God, how do you know that Ashley isn’t very smart, but just is trapped in a body that refuses to let her communicate the fact? Are people with severe or profound disablities not human?

What’s the Turing Test?

Some not all…and in at least ONE culture, what most people would think of as a genetic defect is PRIZED.
And maybe that’s b/c we as a society have taught “geneticly unusual” people that they aren’t worthy. Ever read Brave New World or seen Gattaaca?
Just b/c I possess a couple of unusual features it doesn’t mean that, b/c of it my life is so horrible. I can ADAPT to and live with my disabilities. Sure I can understand why some people think that the way I percieve things might be “limited” or that I’m “impaired” b/c of those disabilities…but my physical disabilites are NOTHING!

66

The Turing Test has to do with testing Artificial Intelligence, as far as I can tell from the few links I skimmed.
So how does it relate to this thread at all?

67

Oh dear. I do believe the parents have the best of intentions, and I feel bad for them – but I think there’s something deeply disturbing about many of the arguments they’re making, especially the underlying subtext that breasts and menstruation are somehow Bad Things that Ashley is better off without. Being a normal, healthy adult female does not equal suffering and discomfort – and according to their own web site, Ashley was physically normal prior to the surgery, and there’s no particular reason to think that she would ever have developed breast cancer or severe menstrual cramps or any of the other health problems her parents decided to pre-emptively prevent for her.

I do agree that she should be on some sort of birth control as she grows older – but there are plenty of ways to prevent pregnancy that don’t involve removing her uterus and halting her sexual development. I also don’t think I’d even have a problem with, say, breast reduction surgery after puberty if it turned out that she was in serious discomfort from having overly large breasts – but it seems wrong to remove them altogether because they might pose a problem later on. Having breasts is perfectly natural, and, well, fun; even if Ashley has the mental age of an infant, it sounds like she’s capable of moving her limbs, touching herself, and enjoying the normal range of physical sensations. (All in all, I’m wondering if discomfort with Ashley’s developing sexuality might be part of what’s driving the parents’ decisions, considering the emphasis they place on her purity and innocence on their web site. I also have a feeling that the equivalent surgery and hormone treatments on a boy would provoke a great deal more outrage from the general public, if the ethics committee allowed them to go ahead with it at all.)

68

[QUOTE=Fretful Porpentine]
Oh dear. I do believe the parents have the best of intentions, and I feel bad for them – but I think there’s something deeply disturbing about many of the arguments they’re making, especially the underlying subtext that breasts and menstruation are somehow Bad Things that Ashley is better off without. Being a normal, healthy adult female does not equal suffering and discomfort – and according to their own web site, Ashley was physically normal prior to the surgery, and there’s no particular reason to think that she would ever have developed breast cancer or severe menstrual cramps or any of the other health problems her parents decided to pre-emptively prevent for her.

I do agree that she should be on some sort of birth control as she grows older – but there are plenty of ways to prevent pregnancy that don’t involve removing her uterus and halting her sexual development. I also don’t think I’d even have a problem with, say, breast reduction surgery after puberty if it turned out that she was in serious discomfort from having overly large breasts – but it seems wrong to remove them altogether because they might pose a problem later on. Having breasts is perfectly natural, and, well, fun; even if Ashley has the mental age of an infant, it sounds like she’s capable of moving her limbs, touching herself, and enjoying the normal range of physical sensations. (All in all, I’m wondering if discomfort with Ashley’s developing sexuality might be part of what’s driving the parents’ decisions, considering the emphasis they place on her purity and innocence on their web site. I also have a feeling that the equivalent surgery and hormone treatments on a boy would provoke a great deal more outrage from the general public, if the ethics committee allowed them to go ahead with it at all.)
[/QUOTE]

I wonder this as well, but on the other hand, one of my good friends is very, very bright, but in a total waste of a body. She’s got CP, and no muscular control over anything but her neck, and that limited. She’s in a wheelchair every waking hour, except when I take her out and dance with her in my arms, or someone is carrying her to the bathroom and sitting her on the toilet and then wiping her ass for her. Or putting a menstrual pad on for her. Or dressing her for bed. She can do nothing for herself, nothing. To “speak”, we recite the alphabet and she looks up to pick a letter. Then we do it again for the next letter. It’s exhausting, for us and for her, and it’s horrible to watch people’s eyes glaze over and not “notice” that she wants to say something because it’s just too hard to listen to her.

She’s bright, there’s no doubt about it. She’s studied at the college level and done well. But she goes through hired caregivers almost monthly, she despairs of ever moving out of her mother’s home and having a “normal” independent life. She is horrified that she’s a “burden” to everyone around her.

And then there’s the sex thing. She’s entirely normal in sexual drive and attraction to men. And utterly incapable of having a full and meaningful sexual relationship, or of even masturbating to orgasm. She tells me it’s incredibly frustrating and she has no idea what can ever be done about it.

I haven’t asked her about the Ashley treatment. I’m not sure if she knows about it. If I see her this weekend, I’ll try to bring it up and report back. But I can tell you if it were *me *in that situation, I’d rather be a “retard” with surgically and chemically stunted growth than feel the sexual urges of a 30 year old woman and never be able to scratch that itch AND be a huge burden on my family. (Of course, I’d rather be dead than either of those, but that’s not my decision to make about anyone but myself and my own children.)

69

If it were up to me I would have stunted her growth to negative 6 feet.

70

[QUOTE=Deaf Geek]
What’s the Turing Test?
[/quote]

To oversimplify, it is a test that should be able to separate real, flesh & blood humans from computers pretending to be human.

If ever a real computer passes it, we are all screwed.

71

That’s a fair point; still, something about the way the parents write about her physical development makes me feel really uneasy about whether this was really done for her comfort or for their peace of mind.

72

How can we tell? We (generic we) need to be careful about judging whether the treatment this child recieved was appropriate or not by the explanations given. If we are not careful, then the set of parents with a flair for words or the money or the smarts to hire a good PR person get to simplify their life by having the Ashley Treatment performed on their disabled child, while the parents who are tactless are vilified for attempting it.

I don’t think it is inappropriate to be concerned about whether the decisions that were made were done for the benefit of the child or of the parents, but I do think we need to be careful about judging based on explanations versus actions. Motive only takes us so far, especially when what makes life simpler/less embarassing for the caregiver also does so for the person recieving the care.

73

(In case it isn’t obvious, my post #72 is a reaction to Fretful Porpentine’s post #71.)

74

[QUOTE=Fretful Porpentine]
That’s a fair point; still, something about the way the parents write about her physical development makes me feel really uneasy about whether this was really done for her comfort or for their peace of mind.
[/QUOTE]

I think the parents’ peace of mind should be considered. We always remind people who are dealing with stressful situations – “Don’t forget to take care of yourself too”. I can’t imagine anything more stressful than 24/7/365 x 30 or 40 years of caring for someone.

75

[QUOTE=Fretful Porpentine]
That’s a fair point; still, something about the way the parents write about her physical development makes me feel really uneasy about whether this was really done for her comfort or for their peace of mind.
[/QUOTE]

Well, OK, I get that. It’s possible they’re keeping her alive for for a sacrifice to the Demon Argstoth on her 18th birthday. But not likely. It’s possible they’re a little ooged out by the idea of changing her tampons in a few years (I know I would be) but so what? As long as good reasons exist (like the ones I mentioned, like the ones her doctor mentioned, like the others mentioned in this thread), does it really matter what their exact motivations are? Can’t their reasons genuinely be that this is the best thing for *all *of them? And are their reasons actually important?

Would you actually tell someone, “Well, moderate exercise and a good diet are good for cardiovascular health, help prevent the onset of diabetes and joint wear from obesity - but since you’re not doing it for those reasons, if fact you’re doing it to get more guys to sleep with you (or “become a model” or whatever thing you think is a dumb reason to do it), you shouldn’t be allowed to do it!”

76

[QUOTE=AuntiePam]
I think the parents’ peace of mind should be considered. We always remind people who are dealing with stressful situations – “Don’t forget to take care of yourself too”. I can’t imagine anything more stressful than 24/7/365 x 30 or 40 years of caring for someone.
[/QUOTE]
That was going to be my point. I imagine that part of their motivation was to keep the girl’s mental age and physical development somewhat on par. The desire to do this may very well come from their own discomfort at the idea of someone with a child’s mind having an adult’s urges, but I can’t really blame them for that discomfort…it’s a totally foreign thing, and they may just think that they won’t know how to handle it. In this sense, their own peace of mind is completely relevant, here…with everything else that they are going through, I think this is one thing they may be better off not having to worry about. And, really, given the story that WhyNot told…it has to be considered whether adult sexual maturity, a source of good things for most of us, would be more of a burden to this girl than anything.

77

Again, fair points all. However, I do think it’s fair to judge the parents’ actions by the explanations they choose to provide to the general public; since we can’t get inside their heads, what other basis for judgment do we have? And based on what I have read, I’m still not convinced that this was the only or the best way to accomplish what they say they want to accomplish – but I doubt that this will make any noticeable difference to Ashley one way or the other, so perhaps all of you are right and I’m wrong.