Pillow Angel Parents Defend Choices

[tropicsgoddess]

This is just plain unethical,selfish and dehumanizing as it gets! A severely handicapped girl's parents had her treated so she can remain as a small child for easier care.http://news.aol.com/health/story/ar/_a/pillow-angel-parents-defend-choices/20080313151809990001
:mad:

[miffed]

They are doing it for her own good, so they can take care of and provide for her more easily and efficiently. They may have gone about it rather unethically but I fail to see it as a horrible dehumanizing act.

If they were truly selfish they definitely wouldn't be going so far to ensure they can take care of her. They're doing this in her best interest, not for the sole sake of keeping her all cute and cuddly. They love her and are committed, quite frankly I respect that.

from the comments:
altering someone to fit your needs is just wrong
Like I said, they're doing this for her needs, the easier they can provide care for her, the better. I can see how it may be viewed as selfish since they are trying to make their lives a little easier and less strenuous, but in the grand scheme of it an easier life for the parents means more love and care will be devoted to Ashley.

Overall she can be cared for better because of this, so I support the parents.

[Seshat]

I'm torn by it.

I can completely understand their reasons for doing it. Caring for the severely disabled is extremely difficult and extremely draining. Parents have to face the fact that they will eventually be unable to care for their child themselves - and that by that stage, the child will be physically adult.

If you've never met a physically adult person with physically adult hormones and the intellect of a toddler, think about the toddlers you've known. Think about a toddler tantrum, with the physical strength of an adult behind it. Now imagine that the adult is not actually aware they can harm you.

That's what the nurses and caregivers in hostels for adults with severe intellectual disability face. And that's one of the reasons it's so very, very difficult to get and retain good staff in such places. Add that they're chronically underfunded, and you have a breeding ground for abuse.

By the time the parents finally get a placement for their child, the parents are almost certainly completely broke. At most, only one of them has been able to do any sort of full-time work: and the one who had the career will have had it stunted by too many emergency call-outs, too little reliability. Any spare money they have been able to earn has gone onto medical bills and equipment. So the parents are unable to influence the placement, nor to help fund the hostel. They have to take whatever they can get.

By keeping her small and undeveloped, they've extended the length of time she can be cared for by family and they've greatly reduced the chance of rape or molestation. Finally, they've made her much more likely to be accepted by a good hostel with good staff - because she will be able to be cared for by staff who are themselves older or disabled, and because she won't be able to injure the staff herself.


But on the other hand, I'm firmly opposed to such a thing being done to someone who is intellectually capable of understanding what's happened to them. And I don't want any risk of the disabled being seen as not people, which already happens far too often.

I'm torn.

[Norton]

I think I side with the parents on this one. This girl's mind will never know what it is to be an adult, so what use is an adult body to her?

Seshat already summed up most of the reasons why I support the parents. Regarding adults throwing tantrums: My sister used to work with developmentally disabled teenagers, some of whom were quite large compared to her petite frame. She was injured more than once at that job. The kids were unaware how dangerous they could be to others.

Now, if the parents were very wealthy and could afford the extra care of an adult as compared to a child, then I would disagree with their decision. However, I imagine the parents are probably middle-class, and having the treatment will allow them to better care for her for a longer time than without the treatment.

I may be wrong, and so may be the parents - but I still think their hearts are in the right place.

[Lace Neil Singer]

I remember commenting on this on another board; I said that since this girl is never going to know what's going on, it's best that she is prevented from abuse. There have been several cases of severely disabled adults being raped in care homes; one case I read in the paper was of a woman who'd been in a permanent coma for months when this care home worker started raping her. The abuse only came to light when the woman fell pregnant and other care workers noticed her belly swelling.

Sick? Yeah, but it happens; better that this girl is spared all that. I also remember someone commenting that this sort of thing happens to babies who are born premature and forced to survive, rather than being allowed to die naturally; they can end up being severaly mentally disabled to this extent. By premature, I mean around 20 weeks; at a point when the baby is not fully developed.

By the way, this isn't the same case as the one I read about, but it's similar and proof that this does happen, no matter how much people might not want to believe that it does.

http://www.boston.com/news/local/massachusetts/articles/2006/04/05/doctor_on_trial_in_missed_pregnancy_of_raped_coma_ patient/

Plus this one:

http://www.tribstar.com/statenews/cnhinsall_story_297131340.html

Whether or not this is how this girl came into being, she's here now, and of course her parents want to be able to care for her as long as they are able rather than put her in a home and risk horrific abuse like in the case that I just stated.

[Boozy]

Its so easy to have an opinion on other people's lives, isn't it? Especially when we don't have to live them.

I see no indication that this decision was made out of anything other than love. That's good enough for me.

I don't judge.

[DesignFox]

I concur with Boozy.

[the_std]

Its so easy to have an opinion on other people's lives, isn't it? Especially when we don't have to live them.

I agree, however, the choices made by these parents have opened up a slippery slope, or an option to other parents of disabled children who probably didn't even consider this before. So now it will have to be debated, fought over, legalized/criminalized, etcetera, etcetera, which is all down to society's opinion on the treatment.

That being said, I'm not going to judge them either.

[powerboy]

I agree with Boozy

They had done it out of love. It is better to keep her like that, instead of on her own. Where she could get raped or worse.

[Saydrah]

Home care workers are available for hire to anyone who would like to hire them, and in most countries there is at least some governmental or grant funding for that purpose.

The dichotomy they present-- Mutilate her surgically or institutionalize her-- is incorrect. There ARE other options, and home care is a good one.

Seshat is right that it's a tough question, but I don't think that their decision was made entirely out of love. A combination of convenience and love, more likely. And the "Pillow Angel" term sickens me. Notice how they say, "If this treatment helps one more pillow angel," not, "If this treatment helps one more PERSON." Their chosen verbage separates Ashley from the humanity she shares with her parents, likely a linguistic coping mechanism her parents have developed so as to face their choices more easily.

Six month old babies ARE able to communicate their desires, to an extent. I have a friend whose child was signing her basic needs by six months- hungry, sleepy, wet diapy- she could convey these things with signing before her speech abilities developed enough to let her convey them verbally. Ashley is smiling in many of her pictures, and her parents have said she recognizes them and responds to affectionate gestures. It is not impossible that, during her natural lifetime, medical technology will advance enough to develop a communication device she can use, or perhaps even a treatment for her condition will be discovered that allows her to develop mentally. There is no absolute guarantee Ashley will never understand what it means to grow and be a woman. There is not even a guarantee that she doesn't NOW understand that her parents forced her to undergo painful surgery without her consent.


While I struggled with it for a long time when this issue first surfaced, I finally came down on the side that says Ashley should have been allowed to develop normally. Depo-Provera can keep menstruation at bay, and home care could prevent the parents from needing to instituationalize her. Birth control is less risky than elective surgery, and it's reversible. They had options, lots of them, not all good, but not all bad. They chose the one option from the list that MOST dehumanizes Ashley.

[Boozy]

...and home care could prevent the parents from needing to instituationalize her...

Canada has some of the "best" home care in the world, and let me assure you, it's balls.

I stand by my original statement: Its easy to judge someone else's life when you don't have to live it.

[Dreamstalker]

Home care in the US also leaves much to be desired. When my grandmother came back to her house after rehab from a heart attack, both the care manager and my mom wanted to find an independent worker. We could find plenty, but for some legal reason we "had to" go through an agency...she didn't need an RN, just someone to supervise her and do errands/cook/call a doctor if needed.

The department of elder affairs got involved back when she was more able-bodied and truly capable of living alone--"zomg why doesn't she have a fulltime nurse this is ABUSE" simply because we were able to rely on neighbors and a (known to us, very honest and caring guy) companion/handyman who came by a few times a week.

I would tend to agree with Saydrah. There were other, less drastic options. The term "pillow angel" is disgusting...sounds like a doll made out of dandelion fluff and ribbon.

I know that abuse can happen (even worse when the target is truly unable to understand much less consent), but I also believe that the individual has their rights...but can't make them known...eeek. I'm not getting into this quicksand right now.

[Pedersen]

Home care workers are available for hire to anyone who would like to hire them, and in most countries there is at least some governmental or grant funding for that purpose.
---SNIP---
home care could prevent the parents from needing to instituationalize her.

I'm not going to address the rest, as I would venture into highly emotionally charged territory for myself.

This part, though, has to be addressed. You see, you've forgotten something: People get old, people have accidents, and people die.

The day will come when Ashley will be institutionalized. That is unavoidable. Her parents will, eventually, die. Home care workers don't work if they don't get paid.

And the government is not going to pay them to work in a home with just one person.

She will be alone. Sooner or later, it will happen. Hell, it could even reach the point where no amount of love will be sufficient and Ashley will be institutionalized simply because her parents will decide to stop providing home care and go have a life of their own.

And what happens then?

[DesignFox]

She will be alone. Sooner or later, it will happen. Hell, it could even reach the point where no amount of love will be sufficient and Ashley will be institutionalized simply because her parents will decide to stop providing home care and go have a life of their own.

And what happens then?

Lots of not pretty things as it is difficult to maneuver an adult from a bed to a wheelchair, etc. From what I read when this situation was initially brought up, an adult would probably be moved a lot less, and be more prone to getting bed sores and having other problems.

By keeping her size small, her parents hope to give her a better quality of life as they can move her, cuddle with her and bring her outside more often.

I think, too, that care workers will have an easier time working with a "child" than an adult. She will probably receive better care as she would be seen as less of a "burden" on the person caring for her. (not saying it's RIGHT, but I can see it happening)

Additionally, I think people tend to feel more sympathatic towards children- by keeping Ashley a "child" perhaps she would get better treatment from others. Perhaps she'll be seen as less of a burden. Maybe people's "nurture" insticts will take over. Because let's face it, most of us see a child and want to protect it. We don't really react to adults the same way.

[Saydrah]

Pedersen-

Her life expectancy is not the same as an able-bodied person's. Ashley's parents are very likely to outlive her. While her disabilities are not fatal or terminal in any way by themselves, the average life expectancy of a person with a condition like hers is much shorter than the overall human average. One hopes that they would provide for her in their will should they pass before her, though.

[AFPheonix]

And if they die unexpectedly? What then? She still would probably have to be institutionalized.

I do not fault her parents one bit. Sure, MAYBE technology will advance to where they can fix her, but I suspect that treatment for her condition will probably tend towards prevention rather than "curing" those who are already disabled.
It's the same argument that I disagree with strongly when it comes to assisted suicide for terminal patients. Sure, MAYBE some brainiac somewhere will come up with some wonder cure, but is it likely? No. Prevent suffering where we can when we can with the tools we have. Her parents did just that.

As for Depo, not everyone does well on that med. Should she be needlessly medicated when a simple surgery would do? Especially a surgery that will keep her from dealing with monthly cramps and discomfort? She's not going to understand why she'd be bleeding every 28 days, and I doubt she'd understand why she's getting an admittedly painful shot every 3 months. (thick oil, I know I was sore for several days after, and I move around more than she).
Sure, it's definitely convenient for her parents, but it's convenient for her too. She'll be more easily moved around, she'll have more opportunities to go out and visit the outside than she would if she was too large to shift.

[Pedersen]

Her life expectancy is not the same as an able-bodied person's. Ashley's parents are very likely to outlive her. While her disabilities are not fatal or terminal in any way by themselves, the average life expectancy of a person with a condition like hers is much shorter than the overall human average. One hopes that they would provide for her in their will should they pass before her, though.

And now who's playing the odds? "very likely to outlive" "average life expectancy" "overall human average"

These phrases indicate a willingness to play with the odds when it impacts somebody else's life (unless Ashley is your sister, cousin, or daughter, it very much is someone else's life you're gambling with. Oh, and the whole world would be quite shocked if you were to be Ashley herself, so that's why I didn't list her as a possibility for who you might be).

A few points of note: Care for someone who is totally disabled is a financial sink hole. People go bankrupt trying to do it. Not to say it can't be done, but Ashley's parents are very likely to have very little in the bank at any one time (more playing with the odds on my part, but I'll admit it, and stake my claim on "erring on the side of caution" along with it).

Ashley is, obviously, totally disabled. The odds you're playing rely on Ashley dying before her parents do. By erring on the side of caution (again), I state that there is every reason to expect her to outlive her parents. Yes, averages dictate she won't, but averages are often very far removed from the extremes they are averaging.

Put these two pieces together, and it's entirely possible that Ashley's parents want to provide for her in their will as an emergency measure, but are going to be unable to do so. Which puts us back in the bad spot:

Ashley has a very real chance of being institutionalized (yes, this is milder than my statement earlier, but that's a concession to the fact that there's also a real chance she dies before that point is reached).

I ask again: What then?

I'll answer one other question that I know is out there: Did her parents do the right thing? I don't know. And the part that bothers me the most is that I'm not sure I'd do anything different if I were them. Should I condemn them for doing this? And if so, would I have to condemn myself as well for admitting that I can understand why they would do it?

[Seshat]

Those who've made the point that 'pillow angel' sounds like they're dehumanising her: you're absolutely right. And it makes it sound creepy.


However, I'm with Pedersen. In a similar situation, I'd likely do the same thing. Or at least seriously consider it as one of my options.

Parents make tough choices for their children all the time. Some of those choices are irreversible. The parents of disabled children are more likely to have to make tough, irreversible decisions for their kids than the parents of fully able kids.

Society sometimes chooses to say that particular choices need to be made with the oversight of an independent party - a judge, a doctor, a social worker. I think in this case, we need that independent party.

Let the doctors decide which cases it might be appropriate to make this choice with. Then have someone - a doctor, a social worker, a nurse - compile the available options, and lay them out in front of the parents.

I think this is one of the situations where parents should decide, with the assistance of the medical community and their ethical advisor of choice.

However I think society is going to need to create clear guidelines about the conditions we'll allow it under. Whether this means we have a child welfare judge who assesses cases and permits/vetos the procedure, or the medical-ethics boards determine that it can only to be done to children who fail these tests, or what - I don't know. But I do know that it needs to be restricted to people who will benefit, not suffer, from the procedure.

[Boozy]

Those who've made the point that 'pillow angel' sounds like they're dehumanising her: you're absolutely right. And it makes it sound creepy.

I realize how it may sound, but dehumanizing her couldn't have been the intent. I can't believe that two parents who conceived, gave birth to, and cared for their daughter for ten years don't see her as a very real person. It seems a little pedantic to focus that much on this one statement.

[Lace Neil Singer]

Agreed. I'm trying to see this case in a neutral way, as I know that there's no way I could care for a disabled child. Even a fully abled child would be impossible, as stated in other threads. I'm sure these parents love their daughter very much, as evident by the fact that rather than put her in a home the second she was born; like a lot of people would have done, they chose to care for her at home.

Let's be blunt here. The chances of Ashley being cured ever are probably around one in a million. She is never going to go to school, get a job, get married, have kids. She'll need to be cared for for the rest of her life, however long or short that is. Therefore, I see nothing wrong with her parents' natural wish to keep their daughter at home with them for as long as possible. Seeing as Ashley has the mentality of a baby, she has no need for a reproductive system and won't understand why she's bleeding once a month, so why force her to keep it just on principle?

Also, as has been said before, a completely disabled adult would take huge amounts of care and lifting; the parents wouldn't be capable of lifting an adult the same or even bigger size than they are. Plus, again as had been said, the parents could die in a car accident tomorrow, or even become ill themselves and need respite care. It's sad, but there are a lot of abuse cases in care homes; I can't blame these people for wanting to ensure that no pervert can take advantage of their vulnerable daughter; or in a best case scenario, that Ashley is not left lying in bed for hours on end, developing bed sores and could even bear the brunt of a frustrated worker's temper.

Finally, none of us can ever know what this situation truly feels like, til we've been there ourselves so there is no point in condemning these parents when they've already proven how much they love their daughter by keeping her with them rather than just putting her in care the very moment they found out about her disabilities. That is what's best for them; by the way, I wouldn't condemn someone who chose to give up their child rather than care for them, as long as they did so for the child's sake and not just so they could say, go out on the piss all the time.

[DesignFox]

I realize how it may sound, but dehumanizing her couldn't have been the intent. I can't believe that two parents who conceived, gave birth to, and cared for their daughter for ten years don't see her as a very real person. It seems a little pedantic to focus that much on this one statement.

I agree. I think it's the parent's term of endearment.

Even if Ashley needs to be propped up on a pillow, or strapped to a wheelchair, she is still her parent's angel.

What parents don't have a pet name for their kids?

My neighbor's call their daughter "Bunny". When I was younger, Dad called me "Boo." :)

I don't see much of a difference there.

Shit, my one friend growing up- they used to call his brother "Little Monster." :p (he was a "terrible 2")

[Seshat]

Okay. My apologies. I can see that I may have been completely wrong, regarding the 'pillow angel' term. I'm not there, I'm not them, I don't know.

[RecoveringKinkoid]

I found the posts from the other caregivers to handicapped children to be very eye opening and heartbreaking.

I imagine these people will do anything in their power to see that their child is cared for. Right or wrong, clearly, these are desperate people doing what they feel they have to do.

I can't judge them, either.

[Seshat]

My blind friend's children are both disabled. One will be independent, eventually. The other never will be.

Caring for a disabled child is a never-ending sequence of heartbreaking choices.