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Growth Attenuation

Subduction Zone

Veteran Member
If the parents are to care for someone no more
mature than an infant for decades, their needs
are more than mere convenience.
Which is why I used a conditional term.
Except not always, many parents only think they do, and it sometime's ends bad for the kid. It's where we need to bugger off with the fantasy that parents are going to knows best and require such decisions to have medical authorization (even with outright overriding the parent if need be).
Amd in this case, if there can't be shown to have a clinical benefit for the person then it shouldn't happen and should be considered abusive and relegated to the annals of history along with every other torture that didn't actually help the patient but often tended to harm them and only benefit caregivers (such as with lobotomies).
Again, I used a conditional term. There may be times that parents do it out of convenience. I have doubt that that happens very often. It may be a matter of practicality. And please note, for both of you, I never said or even implied that the parents have the last word. Obviously some serious discussions would have to occur with medical professionals. For parents of limited means where the child would have to be put in a state institution, and we all know that those are far too often not the ideal place for a person of needs. Or try to take care of the child and eventual adult themselves. As @Revoltingest implied, two parents may not have the means of dealing with a full sized adult. I have changed the briefs on some large people. If they are fully cognizant it is not that hard. but if they are not it will usually take two or sometimes even more. There was a 600 lb man that was frightening to work with at first. But he learned enough so that it was no longer scary and so did I and others. The first night I saw him I think there were four of us trying to get him moved from his wheelchair to his bed. He eventually only needed one person to help him.
 

Shadow Wolf

Certified People sTabber & Business Owner
I do not believe anyone who frequents this board has anywhere near the qualifications that would be required to do what you suggesting.

I do think we could spread misinformation and possibly make an incredibly difficult situation more difficult through our ignorance.


I really think this thread is a bad idea. I don’t think there is anything noble going on here.
We've done it the environment, transgender care, evolution, circumcision, all these things we take in information from the experts to form our own opinions but we can't with this?
 

Shadow Wolf

Certified People sTabber & Business Owner
Which is why I used a conditional term.

Again, I used a conditional term. There may be times that parents do it out of convenience. I have doubt that that happens very often. It may be a matter of practicality. And please note, for both of you, I never said or even implied that the parents have the last word. Obviously some serious discussions would have to occur with medical professionals. For parents of limited means where the child would have to be put in a state institution, and we all know that those are far too often not the ideal place for a person of needs. Or try to take care of the child and eventual adult themselves. As @Revoltingest implied, two parents may not have the means of dealing with a full sized adult. I have changed the briefs on some large people. If they are fully cognizant it is not that hard. but if they are not it will usually take two or sometimes even more. There was a 600 lb man that was frightening to work with at first. But he learned enough so that it was no longer scary and so did I and others. The first night I saw him I think there were four of us trying to get him moved from his wheelchair to his bed. He eventually only needed one person to help him.
Sounds more like a need to change how care approached than forcing medically unnecessary procedures on someone.
The disabled simple do not exist to convenience the nondisabled. Yes, care can be difficult. That's no reason or excuse to violate the bodily autonomy of another.
 

VoidCat

Use any and all pronouns including neo and it/it's
1694758342388.png


This is a graph i found of what the doctors had hoped to accomplish with the treatment. It was made by the parents
 
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Shadow Wolf

Certified People sTabber & Business Owner
Here's an article if defenses for the procedures performed, but even this fails to highlight any definite benefit to the patient. It's speculative, and any perceived gains are essentially lost once the primary caretakers have died and patient ends up in an institution anyways.
https://www.tandfonline.com/doi/full/10.1080/15265160903469336
Objection 15: There is no medical indication for these interventions “Such unnecessary medical procedures without therapeutic indications demean the essential humanity of the person undergoing them.” (A Statement of Solidarity 2007)
Several commentators made the claim that these procedures were unnecessary and not medically indicated, resulting in “social” benefits but not medical ones (CitationOuellette 2008; Mark Merkens in Clarren 2007). Even if one accepts that there were no “medical indications” for the interventions performed on Ashley (and certainly the reasons given for the hysterectomy and mastectomy include traditional medical considerations), the boundary/distinction between medical indications and nonmedical indications or “social” and “medical” benefits is not easily defined. The tools of medicine are used commonly to treat disorders or conditions that are commonly defined as social. Consider laser treatment for facial hemangiomas, braces for crooked teeth, drug prescriptions for acne, and drugs to improve fertility. Attention deficit hyperactivity disorder (ADHD), many psychiatric disorders, severe phobias, erectile dysfunction, growth hormone treatment for short stature, and sleep disorders could all be considered social, rather than medical, disorders. Osteotomies, tendon releases, and baclofen pumps are commonly used in children suffering from spasticity, often for the purpose of aiding positioning and caretaking, arguably a social problem. Some opponents of the hysterectomy have suggested that Ashley could have received birth control pills to control her menses, a different medical solution for a social problem. The insistence on “medical” indications is not sufficient to help us distinguish why some interventions are appropriate and others are not. The relevant question is whether medical interventions were likely to be safe and effective in providing benefit to the patient and improving her quality of life.
It entirely lacks any supporting evidence and citations that od does improve her quality of life.
It's also critical of the social model of disabilities, so no surprise it favors conveniencing the caretakers over individual autonomy and refraining from unnecessary procedures.
 

Saint Frankenstein

Here for the ride
Premium Member
Sounds more like a need to change how care approached than forcing medically unnecessary procedures on someone.
The disabled simple do not exist to convenience the nondisabled. Yes, care can be difficult. That's no reason or excuse to violate the bodily autonomy of another.
Yes, a licensed home care team should be provided for such families for free or at sliding scale cost, if they are not able to afford such services. We need to be more community minded. Everyone deserves to be treated with basic human dignity, at least.
 

Rachel Rugelach

Shalom, y'all.
Staff member
I'm clearly not a medical professional, nor am I faced with being the caregiver for a non-ambulatory, disabled child. I can't even begin to imagine the challenges that parents in such a situation must have on a day to day basis, for years, with no respite.

That said, I cringed while reading the Wikipedia article on the Ashley Treatment. I know that you've mentioned this treatment briefly in another post in another thread, @VoidCat, but at the time I had no idea as to what it entailed.

If there's any doubt as to the awfulness of this treatment done to children in the name of making life easier for both child and parent, then one doesn't have to go all that far back in history to read about what happened to 23-year-old Rosemary Kennedy back in 1941, when the medical procedure of lobotomies were then a popular form of "therapy" treatment for a wide range of mental disorders (including the "mood swings" that Rosemary Kennedy was said to have had).

Rosemary Kennedy was the younger sister of John F. Kennedy. She suffered from seizures (which some believed may have been epilepsy), as well as a mild form of mental retardation. But it was her behavior, as she began to sexually mature into an attractive young woman, that appeared mostly to concern her father, Joseph P. Kennedy, Senior -- a politician with ambitions and expectations for his sons in politics. The possibility of a scandal of a sexual nature involving his daughter was unacceptable to Joe Kennedy and his plans for a Kennedy dynasty.

So Joe arranged to have his daughter lobotomized. A tool resembling an ice pick was used to scramble poor Rosemary's brain to the extent that her personality was extinguished and she was rendered incontinent and disabled.

I think it's important to note that, back in the 1940s when lobotomy procedures were at their peak in the United States, the majority of those receiving lobotomies were women. Also, gay men made up a large number of the lobotomized. Dr. Walter Freeman, who had conducted Rosemary Kennedy's lobotomy, was also responsible for conducting lobotomies on 19 children -- one, a child as young as four years of age, and another having been a 12-year-old boy whose stepmother disliked him and had sent him to Dr. Freeman for "help."

I think that it is also important to note that, as early as 1941, the American Medical Association had denounced lobotomies as being ineffective, and most physicians expressed their abhorrence for the procedure. Sadly, the AMA's recommendations against the practice were only adopted by private mental institutions at the time, while government-funded public institutions continued the practice as a low-cost treatment option on patients who were effectively imprisoned in these institutions. Lobotomies fell out of favor by the 1960s and, if any lobotomies are being performed in the U.S. today then they must be very rare. The procedure is still legal in the U.S.

I don't know whether it's appropriate or fair to compare the history of lobotomies in this country with this relatively new Ashley Treatment, but both clearly merit scrutiny. The Wikipedia article that VoidCat linked doesn't say that the American Medical Association approves of this treatment, and it does say that disability rights activists are calling on the AMA to condemn the treatment. If anyone can find a statement regarding the AMA's official stand on the Ashley Treatment, I'd be interested to read it.
 

VoidCat

Use any and all pronouns including neo and it/it's
I'm clearly not a medical professional, nor am I faced with being the caregiver for a non-ambulatory, disabled child. I can't even begin to imagine the challenges that parents in such a situation must have on a day to day basis, for years, with no respite.

That said, I cringed while reading the Wikipedia article on the Ashley Treatment. I know that you've mentioned this treatment briefly in another post in another thread, @VoidCat, but at the time I had no idea as to what it entailed.

If there's any doubt as to the awfulness of this treatment done to children in the name of making life easier for both child and parent, then one doesn't have to go all that far back in history to read about what happened to 23-year-old Rosemary Kennedy back in 1941, when the medical procedure of lobotomies were then a popular form of "therapy" treatment for a wide range of mental disorders (including the "mood swings" that Rosemary Kennedy was said to have had).

Rosemary Kennedy was the younger sister of John F. Kennedy. She suffered from seizures (which some believed may have been epilepsy), as well as a mild form of mental retardation. But it was her behavior, as she began to sexually mature into an attractive young woman, that appeared mostly to concern her father, Joseph P. Kennedy, Senior -- a politician with ambitions and expectations for his sons in politics. The possibility of a scandal of a sexual nature involving his daughter was unacceptable to Joe Kennedy and his plans for a Kennedy dynasty.

So Joe arranged to have his daughter lobotomized. A tool resembling an ice pick was used to scramble poor Rosemary's brain to the extent that her personality was extinguished and she was rendered incontinent and disabled.

I think it's important to note that, back in the 1940s when lobotomy procedures were at their peak in the United States, the majority of those receiving lobotomies were women. Also, gay men made up a large number of the lobotomized. Dr. Walter Freeman, who had conducted Rosemary Kennedy's lobotomy, was also responsible for conducting lobotomies on 19 children -- one, a child as young as four years of age, and another having been a 12-year-old boy whose stepmother disliked him and had sent him to Dr. Freeman for "help."

I think that it is also important to note that, as early as 1941, the American Medical Association had denounced lobotomies as being ineffective, and most physicians expressed their abhorrence for the procedure. Sadly, the AMA's recommendations against the practice were only adopted by private mental institutions at the time, while government-funded public institutions continued the practice as a low-cost treatment option on patients who were effectively imprisoned in these institutions. Lobotomies fell out of favor by the 1960s and, if any lobotomies are being performed in the U.S. today then they must be very rare. The procedure is still legal in the U.S.

I don't know whether it's appropriate or fair to compare the history of lobotomies in this country with this relatively new Ashley Treatment, but both clearly merit scrutiny. The Wikipedia article that VoidCat linked doesn't say that the American Medical Association approves of this treatment, and it does say that disability rights activists are calling on the AMA to condemn the treatment. If anyone can find a statement regarding the AMA's official stand on the Ashley Treatment, I'd be interested to read it.
I did not find the ama's stance but I did find this from the american association on intellectual and developmental disabilites

 

Rachel Rugelach

Shalom, y'all.
Staff member
I did not find the ama's stance but I did find this from the american association on intellectual and developmental disabilites


The American Association on Intellectual and Developmental Disabilites is certainly an organization that has been around a long time and has earned international respect. Their mission statement is included in the Wikipedia article on the AAIDD, along with their history: "The AAIDD's stated mission is to promote progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities."
 

VoidCat

Use any and all pronouns including neo and it/it's
Pillow Angel . Org the blog the parents made regarding why they chose the treatment they did.

Im not posting it to show support for the treatment. But so folk understand why it was done

According to the site they were mostly focus on Ashley's wellbeing stuff was not done for their convenience but mostly because they believed they were increasing her quality of life
 

PureX

Veteran Member
Hmmm, ... It's a very difficult dilemma.

I guess my first question would be to those parents that elected to have these procedures done: why didn't you simply choose to go all the way (toward convenience) and abort the child to begin with? I mean, if the child's physical presence is foreseen to be that difficult (and I have no doubt that it would be) then why go with all these expensive and painful half-measures later on in the child's life? Why not just end it before it begins?

I guess what I'm wondering is if it's perceived as being OK to 'mutilate' their body for the sake of convenience while they're alive, why not just go all the way and eliminate them before they're born? (I realize there can be many explanations for this. I'm just trying to get at the essence of the issue.)

It's like they want to keep the child around like they would, a pet.

Now, don't get me wrong. I am not passing judgement. It's a horrific choice to have to make, and make mostly on the blind. So I am not in any position to be second-guessing anyone else's decision in this situation. I'm just tossing out some of the questions that come up first to my mind.
 

VoidCat

Use any and all pronouns including neo and it/it's
Hmmm, ... It's a very difficult dilemma.

I guess my first question would be to those parents that elected to have these procedures done: why didn't you simply choose to go all the way (toward convenience) and abort the child to begin with? I mean, if the child's physical presence is foreseen to be that difficult (and I have no doubt that it would be) then why go with all these expensive and painful half-measures later on in the child's life?

I guess what I'm wondering is if it's perceived as being OK to 'mutilate' their body for the sake of convenience while they're alive, why not just go all the way and eliminate them before they're born? (I realize there can be many explanations for this. I'm just trying to get at the essence of the issue.)

It's like they want to keep the child around like they would, a pet.

Now, don't get me wrong. I am not passing judgement. It's a horrific choice to have to make, and make mostly on the blind. So I am not in any position to be second-guessing anyone else's decision in this situation. I'm just tossing out some of the questions that come up first to my mind.
I dont think it was known that she'd be that disabled until after she was born. I dont know.
 

Shadow Wolf

Certified People sTabber & Business Owner
Pillow Angel . Org the blog the parents made regarding why they chose the treatment they did.

Im not posting it to show support for the treatment. But so folk understand why it was done

According to the site they were mostly focus on Ashley's wellbeing stuff was not done for their convenience but mostly because they believed they were increasing her quality of life
Lots of parents claim that when it comes to male circumcision. Doesn't make it real though.
 

VoidCat

Use any and all pronouns including neo and it/it's
Lots of parents claim that when it comes to male circumcision. Doesn't make it real though.
I'm just sharing the info. It's important to know why the parents made the decision they did. Even if you disagree with their reasoning understanding their reasons is important in helping to understand the whole picture and knowing how to help folk in the situation Ashley and her parents were in. This way we can solve problems and increase the quality of life for the disabled through methods that hopefully won't be as extreme.
 

VoidCat

Use any and all pronouns including neo and it/it's
Hi. I’m Jenn and I’m one of the parents that has made the decision to use Estrogen to attenuate the growth of our profoundly disabled daughter, Charley (Family stunts disabled daughter's growth to expand her world)

I’m happy to answer some questions if you have any. All I ask is that you keep it respectful.
Do you know of any studies (not your opinion but actual studies) that show growth attenuation of a disabled child actually does improve quality of life?It may have for your daughter but that may just be in her case. I'm more curious if in most cases it's done in if it does improve quality of life or not.

Do you regret your decision? and can you give a brief rundown of some benefits your child has gotten from this?

Have any problems occurred or negatives as a result of this? How long ago was the treatment and if your child is still alive how old is she now?(I'll read the article in a bit that you linked but I'm very busy at the moment so it'll be a bit)

I will say I do not envy your choice. It does seem difficult to make.

I heard those with children like that who do this treatment and those have children like that and oppose the treatment differ on what they feel is quality of life. Do you see this and can you describe what you feel is quality of life?

I may have more but give me time to ask them. these are starter questions.
 

VoidCat

Use any and all pronouns including neo and it/it's
also you Hi. I’m Jenn and I’m one of the parents that has made the decision to use Estrogen to attenuate the growth of our profoundly disabled daughter, Charley (Family stunts disabled daughter's growth to expand her world)

I’m happy to answer some questions if you have any. All I ask is that you keep it respectful.
also you joined a few moments ago. Makes me wonder if you joined just to comment on this thread. Howd you find it
 

fantome profane

Anti-Woke = Anti-Justice
Premium Member
Hi. I’m Jenn and I’m one of the parents that has made the decision to use Estrogen to attenuate the growth of our profoundly disabled daughter, Charley (Family stunts disabled daughter's growth to expand her world)

I’m happy to answer some questions if you have any. All I ask is that you keep it respectful.

Thank you for coming by and sharing your experience with us. I think you are probably the only one here who as any right to talk about this topic. I hope this goes well.
 
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