Something About Ashley

[nightengalesknd]

So I've been turning over and over in my head the wanting to say something about Ashley. For those who may not have been following the story, Ashley is a 9 year old girl with severe physical and mental disabilities whose parents have chosen an unusual and controversial therapy they've dubbed "The Ashley Treatment." With the support of her treating physicians, they gave her a course of hormone treatment to stop her from growing past the size of a typical 9 year old, so that she would be easier for them to lift, transfer, dress and diaper. And they gave her a hysterectomy so that she would never have periods that might be painful to her. And they also removed her breast buds so that she would not develop large breasts that may have been uncomfortable to have strapped into a wheelchair, and also to avoid the breast cancer that runs in the family.

There's been a fair bit of media coverage for this and a lot of online discussion. There's been a fair amount of outrage from the disability community. There's been a bit of identifying with Ashley by members of the disability community, which have then been countered by those who say that Ashley's cognitive disability is so severe that there is no way anyone who can post for him/herself can possibly compare to her situation. There's been a bit of chatter in the feminist community about the implications of sterilizing and otherwise removing female sexual attributes of a person without her consent or ability to give consent. There's been a lot of gushing of sympathy for Ashley's parents. There have been parents who have similar children posting saying they thought it was the right thing to do, and parents posting that they thought it was the wrong thing to do, and generally telling anyone who doesn't have a child like Ashley that they can't possibly know what it's like.

And I've been trying to sort out what I think. And there are things I definitely think, very strongly, about the treatment and about the way it's been discussed. And then there are some aspects about which I'm still uncertain. Like if it was the right or even an ethical thing to do at all. And people have been asking me what I think, since they know I've worked with kids like Ashley in the past and tend to keep up with disability community happenings. And so here are some opinions on Ashley X and the treatment which bears her name. I'm going to start with the things I'm sure about, and work my way down through the levels of uncertainty later.

1) It had been on the tip of my tongue in several discussions to say, "I've known a dozen Ashleys." And that scares me. I feel as though I should have to revoke my Disability Advocacy Badge for even having had the thought cross my mind for a few fleeting seconds. Because of course I haven't known a dozen Ashleys. I've known 2 Ashley's I can think of off the cuff, and they were both highly verbal and physically capable young adolescents with behavioral and learning issues. And anyway, of course that isn't what I would have meant. Of course, what I would have meant is, "I've known a dozen children with similar physical and mental disabilities to Ashley." Which is true. Between kids at camp and patients in the clinics and hospital, I have cared for or at least briefly met a good handful of children who have severe physical and cognitive disabilities. Children who remain completely dependent for all care, from feeding to diapering, even in many cases to turning from side to side in bed. Children who respond to parents or music or lights by an occasional smile or a turn of the head or eyes. From my experience caring for these children and talking to some of their parents, I do think I have an accurate picture in my head of what Ashley might be like, and what caring for her probably entails. But each of these children and their families have been unique, and none of them are Ashley. Shame on me for conflating the two in my head for even an instant.

2) Ashley's diagnosis is a "static encephalopathy of unknown etiology." Anyone know what that means? Well, it doesn't mean much and neither her parents nor the mass media are doing a great job of conveying this. A friend who is a second year medical student read this as "anencephalic," which is when the brain above the brainstem fails to develop. The prognosis for anencephaly is clear, because it is pretty clear what brain parts are not present. Encephalopathy is different. It refers to a problem in the brain, to be sure, but not always a clear cut structural difference. Encephalopathies can develop from infection (AIDS, "Mad Cow Disease") or liver disease (hepatic encephalopathy) or other processes. And a static brain-based problem is differentiated from one where there are new lesions or changes over time, such as seen in MS or Tay Sachs. In a "static encephalopathy", whatever damage has been done to the brain has been done, and there are no further changes in brain structure. As far as static encephalopathy goes, I have one. Yup, broken brain, right here.

CP is a classic example of a static encephalopathy, in fact THE only example I can think of off the cuff and that's not just because I'm obsessed by it. Symptoms can change over time, with a child going from being a floppy baby with low muscle tone to a toddler with stiffness in the arms and legs. New pain and fatigue can develop, but the actual damage to the brain is over and done with. And a handful of kids with CP are given the static encephalopathy diagnosis. Why, I'm not quite sure. It's certainly not any easier to pronounce than "cerebral palsy," it doesn't explain etiology or function much better, and it's less familiar to the listener. And yet every now and again I see a kid who fits the diagnostic criteria for CP, and whose parents explain how she or he has a "static encephalopathy," usually stumbling a bit over the words. And as we explain, in the back of my head I mutter about this label which really doesn't mean much of anything.

I can't tell you if Ashley has CP. I'm not her doctor, I don't play one on TV, and all I really have to go on is her story as related by her parents on their blog. The history they give is that she had a normal prenatal course and birth, had motor and cognitive developmental delays evident during her first year, and that genetic and other testing has not revealed a cause. The definition of CP is damage to the brain, present before age 4 (or 3 or 5, depending on which list you are reading) which is static and which causes motor dysfunction. This goes a long way towards explaining why there is such a spectrum of physical manifestations, and why some people with CP also have brain-related problems like seizures or mental retardation, and some don't. So while I can't tell you that Ashley has CP, I don't think it's unfair to think of her in the context of children with severe CP and severe cognitive impairment I have known. The standard med acronym for this is MRCP, for mental retardation with cerebral palsy (although two doctors I know and love in the field eschew this acronym, it certainly is still in use many places.) This may or may not solve more problems than it raises.

3) When meanfreepath and I were talking about the Ashley Treatment a month or so ago, to counter some objection I was raising, he pointed out that I am always the one saying "listen to the parents." And I am. And I always think listening to the parents is the right thing to do (which isn't the same thing as agreeing with them 100% of the time.) So I went to their website, which I'm linking here and I would advise anyone who wants to have an informed opinion to take a look at it, not just rely on media articles and web discussions. And I am trying to listen to the parents.

First I listened to their reasons for the hormone treatment. They want to keep her smaller. She'll be easier to lift and transfer and bathe. They will be able to care for her at home longer, rather than needing to place her in a residential care facility. She'll be easier to move around the house or on family outings. More movement decreases the risk of blood clots and breathing problems. And she'll be at less risk for severe pressure ulcers.

None of these are bad things. I support the idea of caring for a family member at home when possible. And the more she can spend time seated, rather than lying in bed, the better for breathing and circulation. And of course, no one could say that avoiding pressure sores is a bad idea. But many children are cared for at home by family as they enter their teens. There are home health aides and Hoyer lifts. None of these options are without problems, but they do seem to work for some children and families. And there are good residential care facilities as well.

Then I listened to their reasons for the hysterectomy. They don't want her to have to go through the potential pain of cramps. The idea would also be to eliminate risk of cancer and her chance of becoming pregnant in the case of sexual abuse.

And I can't say as these are bad things to try to avoid either. In particular, sexual abuse of people with developmental disabilities is disturbingly common. Their main concern seems to be with avoiding the "bleeding/discomfort/pain/cramps" associated with menstruation. She does not need her uterus, they argue, since she will not be having children. I saw a query on a website if her parents were then planning to amputate her legs and arms, since she was not using those either. A drastic question but one that calls acutely into question the meaning of "use" in this context.

Finally, I listened to their reasons for wanting to remove her breast buds before they developed into breasts. Again, they argue she does not need her breasts, since she will never breastfeed. Large breasts run in her family, and the concern is that large breasts would make her uncomfortable lying in bed or being strapped across the chest in her wheelchair. There is also a history of fibrocystic changes and breast cancer in the family, and this would reduce Ashley's chance of developing either. They also figure if she looks less like a developed adult female, she will be at less risk of being sexually abused.

And avoiding breast cancer is certainly a good thing, no doubt about that. And being able to sit or lie comfortably isn't a bad thing either. And there's certainly no argument that avoiding abuse is a bad thing. But the world is full of women who lie in bed and use wheelchairs, and some of these women have large breasts.

If these are all such reasonable ideas, why does each come with a "but"?

4) Another thing I heard the parents say is "pillow angel." That's how they describe Ashley. I'm going to give "angel" a wide berth because I have too much irreligious baggage to have a non-judgmental opinion on that. So I'll address the "pillow" part. They call her that because she "is so sweet " and stays right where they put her, which is usually on a pillow.

The thing is, Ashley is a little girl. A 9 year old little girl. And I understand they are talking about her lying on a pillow, but it starts to sound like they are talking about her being a pillow. Or something. I saw the phrase "objectifying" somewhere, and maybe that put the finger on it better than I can.

5) After I "listened to the parents", I thought about other parents I have met who have children with needs similar to Ashley's. In particular I thought about the spasticity clinic where I did pediatric rehab. Some of the children were being evaluated for a possible baclofen pump.

Spasticity, for those just tuning in at home, refers to muscle tightness, and specifically resistance to stretching around a joint. Most people with cerebral palsy have a spastic form. (Present company excepted) Spasticity can also follow stroke, traumatic or other brain damage, or spinal cord injury. There are a number of potential treatments for spasticity, depending on how disabling it is, ranging from ignoring it, to stretches to keep joints and muscles mobile, to injections of Botox into key muscles, to oral muscle relaxants to a baclofen pump. The thing about baclofen, which is a muscle relaxing medication, is that it can be taken orally. However, to get a concentration high enough to enter the bloodstream, cross the blood-brain barrier, and get into the spinal cord to affect the nerve-muscle junction, you need to use a high dose that may cause considerable sleepiness. So someone got the bright idea to put the baclofen, at a much lower dose, directly into the spinal fluid. Thing is, it requires an operation. A neurosurgeon implants a tube into the spinal column to deliver the baclofen, and attaches the other end to a pager-sized pump that is placed just under the skin in the abdomen. The pump is set to deliver a certain amount of baclofen at a time, and can be programmed to change the dosage in the office. The top of the pump has a rubber cover through which it can be refilled with baclofen in the office every few months. A baclofen pump, therefore, requires a long-term commitment as well as an elective surgery, although the pump can be turned off at any time and even removed.

So in the spasticity clinic, I saw a number of kids being evaluated for baclofen pumps. I also saw a number of children and young adults returning for pump refills, including a college student taking education classes. Practically a peer of mine. And there were some children who could tell us about how the baclofen made them feel better, enabled them to stand and walk more. But the lions share of the kids I saw with pumps or for pump evals were pretty much non-verbal. Someone else, that is, the parents, were doing their talking for them. And of course, for any child, the parents are the ones ultimately doing the deciding.

The similarities I see with the Ashley treatment are several. One are the needs of the particular children who require considerable daily care which will continue indefinitely, and the desire of the parents for this care to occur at home for as long as feasible. Another is the fact that it is an entirely elective surgery. And the third is that the potential benefit is improvement of comfort.

So we'd get the parents into clinic, and their kids of course, and the kids would get examined by an orthopedic surgeon and maybe a neurosurgeon, and a physical therapist, and then I'd go in with the rehab doc and there would be a conversation. And sooner or later, either the parents or the doctor would bring up this feeling of guilt that most of the parents had, that they were considering elective surgery partly to make their own lives as caregivers easier. And then the doctor would try to assuage that guilt. If it's easier for you to change him, his arms and legs bend more easily, he'll be more comfortable while you're doing it. If he she can bend to fit into the bathtub which makes it easier for you to bathe her, she'll be more comfortable, and didn't you say she used to love baths before she didn't fit into the tub anymore?

On Ashley's parents' blog, I saw the comfort part but not the guilt. Or any sense they had agonized over the pros and cons of the surgery (besides the risk of anesthesia.) In fact, they said quite clearly that this decision was not at all a difficult one for them to make. That's probably the hardest thing for me to wrap my brain around, really. Not the treatment itself, but how absolutely sure they were this was the right thing to do.

6) Ashley is nine years old. She is not a 3 month old in a 9 year old's body. She has been estimated to have the cognitive and physical abilities typical of a 3 month old. I hear a lot of back-and-forth about if it's "better" to be a 3-month old in the body of a 9 year old who is 30, or in the body of a 30 year old who is 30, and so on. She is 9 now, and when she's 30 she will be 30. She may be a 30 year old who is the size of a typical 9 year old, but, well, there are 30 year olds who are naturally that size and they are still 30. And the idea of keeping her small because her cognitive abilities are incongruent with her body size and shape? Surely that's a problem with the rest of us, if we can't look past incongruence and see her as she is.

7) One of Ashley's parents' reasons for removing her breasts was to desexualize her in the eyes of a would-be molester. They also think her child-like size would be protective here. Let me never be one to trivialize the possibility of abuse and molestation of people with disabilities. I found a statistic that over 60% of women with and without physical disabilities in one study reported having experienced abuse at some point, and these are women able to communicate the event. And another that children with disabilities were 2.2 times more likely to be sexually abused than those without. So this is a real concern.

I recall a 14 year old girl with a severe brain injury who I cared for a few months ago. She had been in the hospital about a month when we were sending pre-operative labs for her and I learned the hospital required us to send a pregnancy test. As she had had one at admission, we realized that the only way she might become pregnant would have been there, in the hospital, under our supposedly watchful eyes. We were all rather relieved when it came back negative.

But perhaps I'm naive, but I'm thinking that the size and, well, buxomness of the person is not really going to make a realistic difference in if she gets abused or not. Some children get molested and some adults do, and it would be potluck if being an adult who in some ways looks more like a child would be protected or at greater risk.

Sadly, I don't think Ashley can be protected 100% from abuse, no more than anyone else can. And having had a hysterectomy would keep her from becoming pregnant. So would birth control, although certain hormonal birth control options are more problematic due to her decreased mobility increasing her risk of blood clots.

8) Medicine is either a scientifically informed art or an artistically conceived science. In other words, it needs to draw heavily upon both reasoned, scientific evidence and human emotions to be successful. Some of the rationales I've read for the Ashley Treatment seem reasonable enough. There's no known specific medical contraindication for any of the procedures that were performed, and heavens knows people undergo elective surgery all the time for less cause.

So I'm left with the less quantifiable side of all this. And frankly, to use a highly technical term, I'm squicked.

Perhaps I'm not qualified to speak for Ashley. No, I know I'm not. And that's a problem because I'm not sure who is. Those of us with disabilities who are able to speak for ourselves, are we able to speak for another who is not? Can we begin to relate enough to what her best interest might be? And if we are not, who is? Ideally, after the person herself, one looks to the parents. Did they act in her best interest? A hospital ethics committee thought they were. Are other parents of children with similar disabilities the only ones qualified to judge? Or are they at all?

Ashley has had her surgery and her hormonal treatment. It's done. I wish her a good life, as happy and comfortable as possible. I hope she can continue to be cared for at home by her parents, as is their wish, for as long as feasible and that they get whatever help is needed, and then she continues to be well cared for if and when home care no longer is an option. Her parents did what they thought was best for her, indeed, what they thought was their only option.

And what happened to Ashley is just about Ashley. But it's also about the rest of us. Over the next decade, as the Ashley Treatment becomes more common knowledge, are parents going to seek out this treatment for their severely physically and cognitively disabled young children? Are physicians, many of whom have extremely low opinions about the quality of life of people with disabilities, going to recommend it? Are insurance companies going to fund it as a less costly alternative to funding home health care or residential care? Would it only be recommended for those whose disabilities are similar to Ashley's, or would the treatment offer extend to those whose cognitive impairment is less severe, who might someday be able to express an opinion about what was done to them. Would one or the other be more or less reprehensible? There are thousands of children out there who may benefit from - or be mistreated by - undergoing the Ashley Treatment.

And while after all this thinking and all this chattering I can't articulate why, I hope it started and ends with Ashley.
are some opinions on Ashley X and the treatment which bears her name. I'm going to start with the things I'm sure about, and work my way down through the levels of uncertainty later.

Comments

[queenlyzard.livejournal.com]

Perhaps I'm missing something here... as I often seem to when the topic of disabilities comes up. Nor, for that matter, am I anywhere near as close as you to being a doctor. But I'm not sure I understand why you are squicked by this.

I agree that nothing the parents can do will really reduce Ashley's risk of being abused sexually-- but the rest of their reasoning sounds very valid. The medical procedures they are giving her will make it easier to care for her, which in turn should enhance her quality of life.

Your final paragraphs do give me cause for concern-- yes, in a less clear-cut case, who is really qualified to make these decisions? But in this case, the choice actually seems fairly straightforward.

As far as I'm concerned, all we really can do for someone who is sufficiently impaired as to be unable to communicate in any way, is to make their life (or death, as need be), as comfortable and painless as possible. And, of course, to keep up medical research in the hopes of preventing and curing what we can. But what else is there to do?

This ties in, somewhat, to an uncomfortable conversation I've been having over in [Bad username or site: @ livejournal.com] about how we define "personhood". At what point does an embryo/fetus become a person? At what point is it right to take a person who has lost all higher brain functions off of life support? Who is qualified to make these decisions?

I don't know that there's a right answer to any of these questions, but I find myself feeling more and more that... how do I put this? As careful as we must be (and it's very careful indeed!) not to deny personhood to anyone who deserves it, I somehow feel that we run a nearly equal moral risk by extending that protection too far just because of an emotional reaction to anything we associate with human life. I worry similarly about anthropomorphizing animals to much.

I don't just say this because I'm pro-choice (though that is part of it)-- I'm reminded of Mike Resnick's sci-fi story "Hothouse Flowers", which features a future where the aged are almost never allowed to die, but are preserved as drooling creatures in hospital beds for centuries after their minds have left them. That's not a world I'd want to live in...

I've gone off on a bit of a tangent here, haven't I? I think I'll stop now.

[nightengalesknd.livejournal.com]

I think a lot of it does come down to personhood. Who is a person at all and who is a person with equal rights to other people. (Children are definitely people but don't have all the rights accorded adult people, such as making their own medical and legal decisions.) I'm assigning absolute personhood (at least, childhood personhood) to Ashley. Therefore while of course we should be seeing to her comfort, we should be seeing beyond her comfort to her, well, her dignity.

There are a lot of less invasive and life altering ways to enhance quality of life and improve comfort.

It's different, I think, with elderly or incapacitated adults who have had the opportunity to make their own wishes known either explicitly (living wills, powers of attorney) or implicitly (if I ever get like Aunt so-and-so, pull the plug) than with a child who has never known another life. But it is her life. And while the parents should be the ones to speak for her. . . well if it's not OK to do to a child without cognitive impairment, why is it OK to do to her?

Or perhaps this is just the first step in this becomming standard of care and it's a perfectly good thing to do. I just always try to listen to the little shivers up and down my spine. And here, the shivers are louder than the counterarguments. And except for the fact that I've had the privledge of caring for a number of severely disabled children, almost being a doctor has nothing to do with my opinions on any of this.

[juliansinger.livejournal.com]

Your second to last paragraph's last sentence encapsulates my entire (intellectual) argument about this.

I specify intellectual because I also have the squicked part of me going, "Holy shit, no, don't /do/ that to her."

[nightengalesknd.livejournal.com]

Yeah, I'm really trying to get past the squick which is absolutely "NO" and actually try to reason it through.

Playing my own devil's advocate here, though, I do believe that equal treatment of those with and without disabiltiies is not always the most fair or right treatment. I mean, treating me equally to my classmates would mean making me climb stairs and handwrite my exams.

And yet. . .

[gallian.livejournal.com]

what squicks me about the sexual stuff, and the argument that she's thus less likely to be abused is that I know the history of women with MR who were sterilized in the institutional setting in the 1960s. It didn't lead to them being abused less, but rather it made it easier for their abusers to hide their crimes because they couldn't accidentally become pregnant.

those who do not learn from the past.....

[splodgenoodles.livejournal.com]

Yes. That's a really good point.

It also shows an astonishing lack of knowledge about sexual abuse.

[queenlyzard.livejournal.com]

granted, that reasoning isn't good... but do you have an objection to their other reasons for the sexual modifications? The breast cancer concern sounds like a valid one, and I doubt that menstruation would be anything but uncomfortable and possibly confusing to someone who's this severely impaired (I confess, I haven't followed the story at all, so I know very little).

Out of curiosity, do you have any suggestions for reducing the abuse suffered by disabled/institutionalized patients? The only real deterrent I can think of is lots of video surveillance. And maybe stricter psych-test requirements for potential caretakers.

[plasticsturgeon.livejournal.com]

Let's put it this way--would you want all other nine-year-old girls with a family history of breast cancer to have involuntary breast bud removal? And while a lot of women do have significantly painful cramps, even more do not. Is it really proportionate to cut out a major internal organ, especially without the person's consent, just because there's a possibility that it might in the course of its normal function ache for a few days out of every month?

It seems obvious to me that the parents have a lot invested in keeping Ashley childlike and asexual--not just because it will be easier to move her around, but because they're profoundly uncomfortable with the idea of her developing sexuality, and want to make sure they'll never have to deal with it. The fact that they call her "pillow angel" supports this--in modern mainstream American culture, angels are symbols of asexual purity and ethereality.

[nightengalesknd.livejournal.com]

That does seem to be one component, doesn't it? I mean, they say Ashely doesn't need her uterus because she isn't going to be having children. So by that reasoning, should I have mine removed also?

[queenlyzard.livejournal.com]

Ok, I guess that one is an unnecessary procedure-- and of course, there's no reason to make her undergo any more surgeries than she has to. Still-- some women who chose not to have children do elect to have hysterectomies, don't they? Usually those at high risk for uterine cancer or chronic ovarian cysts? So, if it's something that adult women sometimes chose for themselves (tell me if I'm wrong), I think it is reasonable that Ashley's guardians can chose it for her.

I'm not sure I agree that her parents are afraid of her sexuality... And in a way, she never is going to develop "sexuality", is she? She can't ever be emotionally/mentally mature enough to have sexual experiences of any kind, can she? (Again-- tell me if I'm wrong, but this sounds like a pretty extreme case) So why burden her with the physical attributes of "womanhood"? It sounds as if, not only could these things bring her no pleasure, but she wouldn't even be aware of them for the sake of "looking like" other women. Maybe the people who deal with her in life would be more comfortable with her looking like a 30-year-old female when she is one, but that's our problem, not hers.

I realize that it is 1) a completely different context and 2) science fiction, but I am irrepressibly reminded of Anne McCaffrey's "Brainship" series here.

The other thing to consider here is the feelings of Ashley's parents. So, maybe they are uncomfortable with watching their daughter grow up physically when she can't develop in any other way. Isn't their comfort an important factor in Ashley's quality of life... and theirs? After all, they plan to spend the rest of their capable lives caring for a girl who can't so much as express gratitude to them... that's an enormous emotional burden.

I think that easing their distress is an important factor in these decisions. (And no, I'm not saying that parents can do anything to a child just to make their lives easier... but this ties into my views on abortion rights as well. Everyone screams on about the rights of a fetus that is barely at the point of responding to basic physical stimuli, and no one says anything about the rights of the undeniably conscious human being who is the mother).

I guess I feel that unless someone has a good reason why Ashley should keep her breasts or uterus, I have to go with the parents' decision on this. They have to make a lot of hard decisions on her behalf, and I think they are making them to the best of their (or anyone's) abilities, given the limited options for Ashley's future.

[nightengalesknd.livejournal.com]

Sure, some women choose to have their breasts and uteruses removed for lack of use, but it's a completely elective prodecure. The burden of proof should be on a good reason to remove something (besides not needing it - we don't do elective appendectomies or tonsilectomies anymore either) rather than a good reason to leave it in.

For all we know, this is a similar situation to the Brainship children. We only know that we can't measure Ashley's intellegance by her responses. But there is some possibility - probably a pretty low one - that she is completely cognisant of more that occurs in her surroundings than she is able to indicate. That's the rationale I use when I examine children who don't seem to smile or turn their head or eyes to anything in particualr - I still talk to them and tell them exactly what I'm going to do before I do it, and try to leave a TV or music on so they have something besides the silence when no one is in the room.

[queenlyzard.livejournal.com]

Isn't there actually a way to measure this kind of thing? I mean, can't they do EEGs and fMRIs? Doesn't that give enough of an idea of her cognitive level?

[gallian.livejournal.com]

fear over their child becoming a sexual creature is very common among parents of kids with disabilities. most get educated and get over it. because, well, it happens.

It's a common concern for parents of typical children too....

[splodgenoodles.livejournal.com]

I'm assuming at this point that her mother and any sisters she might have have already had their breasts removed. If that's the case, maybe it's valid.

The flipside of the breast issue, in fact the whole question of sexualisation, is that she might just enjoy having breasts. I don't actually know whether they are seeking to remove her ovaries, but I assume if they're messing with her hormones they'll be seeking to prevent a range of hormonal changes that may actually give her opportunities for feeling pleasure.

As for safety: I take your query to be a general one and not simply confined to the severely disabled.

I don't know of any psych. tests that pick out typical rapists(they generally will only pick out the very few who are convicted who are atypical). Given that abusers are not usually mentally ill this is not surprising. (And of course, there are no entrance requirements for parenthood. They let anyone in.)

Any broader psych. tests to find particular personality types (eg - people with anti-social personality disorder) are always open to falsification. If a person is keen to get a job where they have power over people who can't fight back, they'll just adjust their test responses accordingly. Having said that, I'm very much in favour not of psych. testing alone but of careful interviewing as well.

Constant video surveillance would make life hard for everyone, including people receiving care. And this also assumes we are only thinking about people if and when they are actually in residential care, and assuming they might never duck round to the pub for a beer. So you could only have that level of scrutiny when you had a bedbound 'pillow angel' anyway.

I suspect a better idea is to ensure that people have a living environment that emphasises human rights, takes concerns and complaints seriously, and ensures a variety of people are interacting with each other in the process of caring. The work culture needs to be a healthy one - I imagine abusers thrive in a place where other employees (who aren't abusers) don't feel safe and supported, where morale is low.

There also needs to be thought given to interaction with other clients and ensuring that any contact is consentual.

Indeed, what I'm suggesting is we need to change our culture and attitudes towards sex, power and violence, end of story.

[nightengalesknd.livejournal.com]

I don't believe that other nuclear female relatives had had mastectomies. It didn't sound like a BRCA gene has been specifically identified, rather "there is breast cancer in the family." A completely different situation in my opinion. She did not have her ovaries removed.

And I agree that we need to change our culture in so many ways. . .

[queenlyzard.livejournal.com]

Gah. I wish there were legal requirements for parenthood! (yes, yes, I know there's no way it could ever work-- no human is qualified to come up with criteria for that, let alone enforce them... but the sheer number of children who wind up with "caretakers" who are anything but... it just makes my blood boil).

[nightengalesknd.livejournal.com]

I've told you my criteria (not enforcable but I do think they are the right criteria) for a parent liscence?

1) Over the age of 18

2) Proof of a way to support the child and childcare arrangments made (job, partner with job, grandparents with resources who sign something saying they will support the family while the parents are in school, etc) I also think then the state could/should help with things like childcare options.

Still leaves a lot of problems, but I think they would go a long ways towards solving some basic crises. Then we might have more societal energy to work on the problems that remain with some of these families.

[queenlyzard.livejournal.com]

*laughs* See, I have to disagree with those criteria right off. The age one isn't bad, for the sake of the parents getting to a higher education level first, but there are perfectly decent parents at younger ages too, particularly if their families help raise the child.

And I doubt my own mother could have proven her ability to care for me-- after all, she spent most of my childhood self-employed, and poorly so. It's a real tribute to her creativity that she managed to do without spending money on a lot of the things most people do.

My criteria are more along the lines of psych tests... and, unfortunate as this may be, basic intelligence tests as well. I'm not trying to disparage people with limited mental abilities, but I think there are certain things you have to be capable of learning if you want to be a parent (unless it's under supervised conditions, maybe?).

I mean, someone who can't understand things like warning labels and nutritional guidelines isn't going to be a good parent, however kind-hearted. Even people who have learned to follow those kinds of life-rules by rote may miss information that is critical to a child's safety.

And schizophrenics should not become parents. Nor should current drug addicts. Probably people with histories of very severe depression or psychotic episodes shouldn't either. I know too damn many kids who grew up in the shadows of their parents' illnesses-- either being abused directly, or having to be caretakers. Not to mention the stress of losing those parents to suicide or institutionalization.

But criteria like these are far too open to abuse, and I know it. When are we erring on the side of too much caution? At what point does the potential welfare of the child outweigh the rights of the potential parent?

As usual, there are no good answers. You know, I don't envy you in your line of work.

[gallian.livejournal.com]

I think the breast cancer argument is delt with by other people later in the comments here, so I'm not going to address it here.

Regarding menstruation being uncomfortable/comfusing: I've worked with a lot of teen girls on approx. Ashley's level (or a little higher.) Some have bad cramps and go on Depo, some do seem to get uncomfortable and take Tylenol. Most, however, don't seem to notice it at all. Espeically those who don't seem to recignize when they need to be changed. The only children I've known to be "confused" by menstruation are the high-functioning autistic girls, not a comperable population to Ashley X.

Regarding the isse of abuse: Video survailence has been tried. Potential abusers have found ways to get around it, and it certainly takes away much of the dignity we are trying to protect.
The only protector against abuse I know of that works is education and communication. Don't let people work with the child out of your sight until you have seen them work in person. Get references and talk to them personally. It's not failsafe, but nothing is. It does go a long way toward people being treated with respect.

[nightengalesknd.livejournal.com]

Did you come across the bit where Ashley's parents got some sort of exception to the rule on forced sterlization of people with MR without their consent? The rationale was because Ashley was so impaired, that rule didn't apply.

[gallian.livejournal.com]

and this is different from the 1960's because....

[plasticsturgeon.livejournal.com]

[shudder]

[god-of-belac.livejournal.com]

What was said above about sexual abuse, I agree with. Sexual abusers, from what I've read, seem to abuse regardless of physical development.

That said, I can understand why this is squicky, and if this were done to people with more cognitive development (i.e, who could understand, but not communicate, the significance of breasts, adult size, etc) it would indeed be very problematic. Your point (2) seems to address this. But if we know that she'll never develop understanding of these things, why not make her more comfortable?

Also, "pillow angel" is a common phrase used by parents of severely disabled children like this. AFAIK it doesn't imply that the child is a pillow at all--"pillow" in this case is more similar to "cheeseburger" than "cheese stick," modifying rather than describing the construction or function of the noun it follows. I wouldn't take offense at it.

[nightengalesknd.livejournal.com]

I've encountered "angel" before but never "pillow angel." And if that were the only thing I found problematic in this whole situation, I would definitely overlook it. However in context, it does make me wonder a bit more.

[gallian.livejournal.com]

Do we really know that she doesn't understand it, at least on some level?

[god-of-belac.livejournal.com]

That seems to be what (2) in the post addresses. Do we know whether she's really permanently at 3 months old in terms of brain development? And what do 3-month-olds understand about body developments that haven't happened to them yet?

Personally, I think this is like the physician-assisted suicide and other similar debates--a procedure that in some cases is justified, while in other cases would be abusive. This is one of the justified cases, but the larger question is, how far on the side of caution do we err? How much risk of abuse do we allow in the service of benefits for the justified cases?

[nightengalesknd.livejournal.com]

We don't know for sure what she understands or if she has the capacity to grow and develop past her current level.

One thing about people with somewhat less severe cognitive impairment, say someone who never reaches past a "mental age" of about 6, is that an adult with a mental age of 6 has something actual 6 year olds do not have which is years of lived exerperience.

For what it's worth, I'm against assisted suicide. If we as society don't let non-disabled people kill themsleves, why do we not only allow but encourage and aid disabled people into doing it?

[god-of-belac.livejournal.com]

Considering the last point: Because they're doctor-certified terminally ill and will be in physical pain every moment until they die. I'm against legality of suicide in almost every circumstance, but there are some exceptions. If you say there are no exceptions (except possibly coma/brain death/Terri Schiavo-esque situations, which are a whole nother kettle of fish), I can see how you'd be more troubled by this case than I am.

Considering that we don't know if she has the capacity to develop further, I'm getting closer to your level of squickedness anyhow. I'm not sure what level of cognition would make me against doing this, but 6 years is above it and 3 months is below it. Probably it's tied to some sort of linguistic/communication ability threshhold.

[nightengalesknd.livejournal.com]

I know some of the people in the original Kevorkian assisted-suicide situations weren't "terminally ill" as we define it - they had more things like MS. And. . . well a lot of people have chronic pain. And a lot of people with mental illness who might consider suicide describe their situation as similar to being in chronic pain. But we put those people into a hosptial on a 72 hour hold to prevent them from killing themselves, meanwhile giving those with physical illnesses the bottle of pills? On the other hand, I'm such a fan of individual rights that I'll support assisted suicide the second the "rules" for suicide acceptability become the same despite the underlying reason and condition.

[god-of-belac.livejournal.com]

I'd rather be somewhat inconsistent, i.e extending to only some people rights I believe justified for everyone, than be consistent and deny everyone those rights.

Also, "Will die soon + will be in pain for life" isn't too dissimilar to just "will be in pain for life" in my view.

The issue with mental illnesses is this: When you're physically ill, you remain capable of making medical decisions. But if you're mentally ill to suicide, then at the points when you're suicidal by illness you're not competent to make this decision. (A) it's hard for third parties to tell when a person's suicidal because their brain chemistry is off, vs when they're suicidal because they've rationally decided the pain of their non-lucid periods is too much, and (B) if they have lucid, rational periods they're not "in pain for life." I'd rather not get the matter bogged down in "how chronic is chronic enough"--better, as I said above, to get the right to the people who clearly ought to have it, -then- argue about where the borderline lies, than to wait until everything's clearly defined before letting anyone do it.

Disclaimer: The author is (decreasingly severely) bipolar and has had depressive-to-thoughts-of-suicide episodes.

[god-of-belac.livejournal.com]

To analogize my above point,

Replace "right to suicide" with "right to physical safety"...

I'd rather live in the pre-1960s American Southeast, where only some had the right to not be lynched or beaten, than live in the Soviet Union during the same period, where no one could be confident of their physical safety.

[queenlyzard.livejournal.com]

I'm with you on this argument. Of course, chronic physical illness can lead to depression, which makes the line a little more fuzzy... but no, I think that if I were ever in permanent pain, I'd want the option not to live that way. I think people have that right. Hell, maybe even those whose mental illness hasn't responded to all available treatments...

(I, too, have suffered major depression. I am glad to be alive now. But if I was ever convinced that the way I used to feel had become a permanent condition, I'm not sure I'd want to continue living)

[maccaj.livejournal.com]

Fantastic post... you articulated this far better than I have, despite my numerous attempts.

[nightengalesknd.livejournal.com]

Thank you. I've been agonizing over this post for weeeeeeeeks.

[ryotboi.livejournal.com]

wow, thanks for posting this

[nightengalesknd.livejournal.com]

Thanks!

[trinfinity2001.livejournal.com]

I second that, thanks for posting this.

Why do I feel as though her parents believe that this girl can't feel pain? Why inflict a painful hysterectomy operation on someone to keep her from having to "endure" menstrual cramps? (which, by comparison to the pain of a hysterectomy seems completely trivial)?

[nightengalesknd.livejournal.com]

I suppose their thought was, post-op pain once for 4-6 weeks versus pain 3-4 days a month for years and years? I'd think that they could wait to see if she seems uncomfortable from cramps and then give her Advil, or consider Depo for birth control which often reduces menses to just a few times a year. Like other parents do. . .

[zdenka]

Well, I find the story profoundly squicky.

It just doesn't sound to me like her parents are thinking of her as a person at all. More as if she's a living doll. I mean, I have known parents who have trouble assimilating the concept that their child is a separate being and not an extension of themselves, even when the child isn't in any way disabled and is perfectly well able to communicate. I just don't think that the "pillow angel" mindset is one that ought to be encouraged.

[queenlyzard.livejournal.com]

I know this is going to sound horrible of me, but I think I disagree with that.

After all, how exactly are parents supposed to cope, emotionally, with a child who will never develop past the point of babyhood? I don't know that you can accord them any more "personhood" than you do to a baby-- which is to say, you do your best to keep them comfortable and content and clean and fed... but it's not as if they'll ever be able to share the deeper mental connections that typically happen when one's offspring develop "adult" personalities.

In a way, it seems like a mercy to me that they can view her as a sort of perpetual infant (which is how this comes across to me), and treat her with the care that we accord babies. Better that than raging against all the things she can never do or be... Better to distance themselves a bit emotionally than to become too upset to cope...

There is no "fair" here. There is no possibility of Ashley ever living anything like a normal life. It isn't as if more PT or special education or talking to her like she's older is going to fix anything that's wrong with her. The fact that her parents don't just want to stick her in an institutional hospital bed for the rest of her life is somewhat amazing as it is. I don't really know what more they can do for her than what they are already doing.

[zdenka]

You write, "I don't know that you can accord them any more "personhood" than you do to a baby." But what I am talking about is what I consider the very essence of personhood -- the acknowledgment that we are interacting with another human being, with thought processes separate from our own. In the case of a baby (or an adult who is mentally incapable of grasping that fire can burn), I'm not going to let him do everything he wants to, but I am going to remember the difference between a baby and, say, a screen-saver.

A baby is a person and not a thing -- a person, and not an extension of another. Regardless of what she will ever understand or not understand, Ashley is a person and not a thing. A person, and not an extension of another.

When a parent cannot tell, emotionally and with an intuitive gut-level understanding (as opposed to a merely logical comprehension), where she ends and her offspring begins, I consider it a profound problem, whether the child is an infant or an adult and developmentally disabled or a genius.

No, I don't think Ashley's parents should be doing more -- I lean toward thinking that they should be doing less. As in, not deliberately stunting their daughter's growth or having various of her body parts removed.

You say that you think you disagree with me, to which I say, "please do." Disagreement is basic to a free society. I respect your right to your opinion, but I stand firmly by mine.

[queenlyzard.livejournal.com]

Fair enough. To be honest, I don't know if they are doing the "right" thing, or even if there is a "right" thing to do. But if this is the way that they feel they can best care for Ashley for as long as possible, I respect that.

I have the deepest sympathy for their pain at having a child with such terrible limitations. If their emotions are a little confused on how best to deal with it, I'm not surprised. Again-- I don't know if they're right, but it seems to me that they're trying to do "everything they can" for Ashley... perhaps they are doing too much, out of a desperate desire to do something, anything, to make her life easier. Given the choice, I think it's better than doing too little.

[waterowl.livejournal.com]

I had avoided reading much about the whole Ashley thing. You see my son pretty much just lay there for the first six months of his life. Not being a doctor, I thought that encephalopathy meant that part of her brain was missing. I'm really angry to discover it is not. I feel the parents are misleading me. In fact I feel more angry as I read the web site and look into that child's eyes. I do not see a pillow. I see a child, trapped. "Pillow angel" horrifies me. It was not clear what my son was capable of, but I'd never call him a pillow. He was NEVER an OBJECT. I also see ZERO NOTHING NADA about what the parents tried to get their "pillow" to be more than a pillow.

Our insurance is mightly f*up. I could get all the operations and medical procedures I wanted to make my son survive, but I had to fight for every last bit of OT or PT (unless he was in the hospital) to make his quality of life better.

I am incredibly angry. I feel this child has parents and doctors who treat her as an object a "pillow" and not a person. I want to go and cut off the same body parts on them. After all they don't use them most of the time either.

[nightengalesknd.livejournal.com]

One of the things I feel strongest about Ashley and media representation of disability overall is that there is a great deal of misrepresentation. I don't think the use of "encephalopathy" in this instance is accidental. Although I'm not sure if it is the parents doing the misleading or if they have themselves been mislead.

I have a young patient now I see in conjunction with a neonatologist who runs our NICU follow up clinic. I love this little guy to pieces. He has some pretty evident motor disabilities and I asked the neonatologist when she would consider giving him a cerebral palsy diagnosis. She says he would qualify for it now but she doesn't want to give him one because she says it isn't descriptive enough. She'd rather say things like spastic quadripelegia. While I see her point, and the label wouldn't change his abilities and disabilities nor the services he is receiving now, I wonder if at some point we are cheating his family by not allowing his parents to connect to the broader CP community. Then I wonder if I am projecting my own absurdly delayed diagnoses onto his family. Its something I am going to think really carefully about for the next few years I am caring for them.

Did you see the piece recently on Katie Thorpe in England? Teenaged girl with CP whose mother wants her to get a prophylactic hysterectomy to spare her the embarassment of periods. As opposed to the embarassment of needing care toileting otherwise, evidently. Unclear from the articles how much Katie is able to understand or communicate. What's interesting there is that the ethics committee there said No to the procedure. Gave me some hope for the future.

[waterowl.livejournal.com]

It was helpful to *me* as a parent to get Little T's spastic diplegic CP though apparently he's getting over it I didn't know CP was something you could recover from, but then doctors are learning every day the brain is much more plastic than they thought.

CP actually helps with the regional center here. Dunno about other places.

My son had the entire gene associated with dystonia sequenced. He has a variation thought to be benign. My theory is that it is benign as long as nothing happens to you. But in my son's case, his extreme birth trauma and brain bleed caused by his Kasabach Merrit Syndrome caused mild brain damage and hence the dystonia emerged. In case it's more on the balance end of things. He had severe motor delay. Now he walks and can kinda run. But ever so often he goes what we call "offline" I have it too. It's where for an instance you totally lose track of yourself in space and time and if you don't have good balance reactions you fall. Thing is balance reactions can be taught and both my son and I have learned them. He doesn't appear to have any clonus.