4 Jan 2007

The mistreatment of Ashley X

My head is spinning. I've just been reading about 'Ashley X', a disabled 9 year old girl from the USA. Ashley has static encephalopathy, and she cannot walk, talk, keep her head up in bed or swallow food. Her parents have taken some extreme measures which they say will enable them to care for her better. From the Guardian article;

In discussions with doctors at Seattle Children's hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.

The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.
Most of the comments I've read on the BBC site are backing the parent's decision. Lots of people are saying that unless 'you have walked a mile in their shoes', you cannot criticise their decision. I'm wondering if anyone is willing to put themselves in Ashley's shoes?

On the Guardian blog, there are all there are several clever-sounding and highly disablist comments like the following;
Human rights are concerned with the individual, preventing harm to the individual, preventing violation of their wishes and preventing the removal of their freedoms of choice. The child in this case has no wishes to violate, and the action taken will not limit her freedoms of choice for the same reason. The child's psyche will not experience the moral indignation we might jump to, but she will certainly be able to feel pain. If the bedsores explanation is medically correct, the right for the child to remain in comfort and free of bedsores is justification enough.

I have left a comment of my own on the BBC site but can't be bothered to engage with the 'superior' beings who write on Comment is Free.

I managed to see an interview on the BBC News 24 channel with a woman from a UK disability organisation (I didn't catch which one) and a doctor from the Great Ormond Street Hospital in London. They both spoke against what has been done to this child, the woman gave a brilliant interview making all the points about how Ashley's human rights had been disregarded, how technology is available to enable many people to move and communicate.

I think this is horrible and I have tremendous pity for this little (and staying that way) girl. I dislke the name they've given her; 'Pillow Angel'. I wonder if there is any evidence showing that women get more bed sores than men? I say that she has been mutilated in a way that should shock anyone who cares about human rights, particularly the rights of disabled people and women. If the parents are concerned that she could be impregnated, contraceptive pills exist. There are even Pills that prevent menstruation, though I personally don't see why dealing with bleeding once a month would be such an issue. They say that;
Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.

She is only 9 years old. Who can say what her outcome would have been?

I would agree that the parents, and all those caring for children who need so much help and attention, deserve to have all the support and access to enabling technology they need and that really doesn't happen now, either here or in America. But this is just wrong. And yes, I am entitled to judge.

For a good analysis of the issues, read Wheelchair Dancer. For a gut reaction, go to Cheaper Than Therapy.

33 comments:

Ms. Clark said...

I think what those parents did was awful. I think it was mutilation.

Kevin said...

Mutilation - abomination. What a world we live in.

ebohlman said...

Yep, it was mutilation. Unfortunately, all too many people think of disability as permanent childhood, and the result is that is that the notion that a disabled person might become sexually mature gets mentally filed into the terror category of pedophilia, at which point the limbic system manages to overrride the cortex (a very common mechanism of prejudice; back in the 1950s much of the American opposition to racial integration was based on a fear of mature black males having sex with underage white girls). This girl's parents seem willing to sacrifice big chunks of her life in the hopes that she'll be a Perpetual Virgin.

Kristina said...

I'm still reeling from reading about this---forced amputation.

Malky said...

I have to disagree. This is about two issues, and in both cases, the parents and doctors didn't cross any moral boundaries.

The first issue is the right of a mentally retarded person to have control over his or her body. In this case, I would say this right has to be redirected to the parents and doctors in a case of such mental disability.

The second issue is whether this sort of operation is ever appropriate. While it is an unusually drastic approach to take, it does seem to be a safe and effective way of making everyone's lives more comfortable. I can't disagree with that.

Sharon said...

Malky, it appears from what I have read, that most people discussing this issue agree with you; because she is mentally retarded, her rights are diminished and transferred to her parents and doctors. I however, disagree with both points you made.

I don't know where this 'mind of a 3 month old' statement is coming from. How do they know? Just because she cannot speak doesn't mean she can't communicate. Lots of people with experience of autism know that. She is so young and may still develop further, given the right support.

But whether she does or not, the rights of a person with a severe developmental disability should still be protected. They should have protection from such mutilation for such spurious reasons.

They other point you made was that this action, though drastic, will improve the lives of everyone involved.

I fail to see how it improves Ashley's life. The parents state that they want her to be comfortable. I am all in favour of the family having access to whatever hoists or other technology they need to help to move her and keep her comfortable. The idea that keeping her artificially small will benefit her, doesn't ring true to me.
And the desexualising is totally shocking. There is a real fear of femaleness here and a messed up view of menstruation and abuse issues.

jo said...

no body knows what they would do unless they were in that familys situation they are only doing what they think will be best for their child .

Sharon said...

Jo, I think I do know what I would do in that situation, and it wouldn't be what has happened here.

I have to lift and carry my 6 yo son often right now. If I still have to, for example, lift him out of bed at night to take him to the toilet or change his wet sheets, when he's too heavy to lift, I will look for some other solution.

What do you reckon the ideal 'freeze' age would be, wouldn't a 5 yo body have been even better, after all the child would be even smaller then. Perhaps I'd better get in touch with the Seattle Children's Hospital quick to freeze my son before he gets too big to handle (sarcasm over).

jo said...

no one said it is the right choice for everyone but its right for them. you are obviously a stronger person emotionally than them and i admire you a lot for that i hope all goes well with you son and keep up the good work

laurentius rex said...

All I can say is Bonsai Kittens, there was an outrageous at the notorious internet hoax http://www.museumofhoaxes.com/pranks/bonsai.html

Yet this is legal?

I would guess a significant proportion of Americans are against the cultural practice of female circumsision, which they would regard as barbaric, yet this is civilised?

Malky said...

"I don't know where this 'mind of a 3 month old' statement is coming from. How do they know?"

MRI scans, perhaps. Or other ways that I'm not as familiar with.

I sincerely doubt that these educated professionals just looked at the girl and said, 'Well, we dunno whether or not her brain works, so we're just gonna assume it's broken.'

"But whether she does or not, the rights of a person with a severe developmental disability should still be protected. They should have protection from such mutilation for such spurious reasons."

'Mutilation' and 'spurious reasons' are both incredibly subjective terms. Whether or not such a surgery is appropriate ought to be left up to, ideally, the person that is being operated on. If that person is not capable of making such a decision (as in this case) then it should be left up to that person's guardians, such as her parents and doctors. Which is exactly what happened.

"I fail to see how it improves Ashley's life."

Really? I thought that was fairly clear. An increase in size would make transporting her more difficult, meaning that it would have to happen less and would be a much less pleasant experience for everyone involved. In addition, puberty is is painful process (emotionally and physically), and one that now she won't have to go through.

Kassiane said...

An awful lot of Rett parents think the mutilation of Ashley is unthinkable. Read up on Rett if you want to know why that matters.

As for her developmental level, if she has little purposeful movement, they CAN'T determine that. There is absolutely NO WAY without praxis. And if they find a way theyd more likely than not find out they were dead wrong. Again, see Rett Syndrome.

I was scheduled to see a geneticist at Seattle Children's. I cancelled after jumping through thousands of hoops. This is why. Their medical ethicists have no...um...ethics. They mutilated a little girl to make her parents lives easier. At least until they find something else to complain about. Catholic hospitals for me (and yes, I actually ASKED each one I called what they thought about the Ashley treatment, as it is called, before I made the appointment).

Truly disgusting.

Sharon said...

Malky said
'I sincerely doubt that these educated professionals just looked at the girl and said, 'Well, we dunno whether or not her brain works, so we're just gonna assume it's broken.''

Perhaps that's exactly what they did; they don't know what happened to her so have no way of giving an accurate prognosis for her future.

And as for how this improves her life, as others have said, amputating her (also unused) legs would make her lighter and smaller too. It's just wrong!

I have to take issue with your claim that 'puberty is a painful issue'. Should I try to save my daughter from the trauma of puberty too?

Malky said...

"Perhaps that's exactly what they did; they don't know what happened to her so have no way of giving an accurate prognosis for her future."

Perhaps it is. However, once again, I am going to have to stand behind the assumption that these are medical professionals and not complete idiots.

"And as for how this improves her life, as others have said, amputating her (also unused) legs would make her lighter and smaller too."

That's true, it would. And if her legs should ever present a serious problem in the future, I wouldn't complain if they removed those as well.

However, given that people tend to be socially uncomfortable around amputees, I don't think that amputation would necessarily be wise.

"It's just wrong!"

That is never, ever an acceptable reason. Things are never "just" wrong. They are wrong because they hurt people.

Hurting people is wrong. Surgery is not.

"I have to take issue with your claim that 'puberty is a painful issue'. Should I try to save my daughter from the trauma of puberty too?"

Absolutely. Of course, unless your daughter is a near-vegetable, I don't know of way to do so that wouldn't be physically, socially and mentally crippling.

Ashley X, however, is already crippled. The damage is done.

Sharon said...

Oops, look like I tried to have a rational discussion with someone who really doesn't get disability rights and thinks that a good reason not to amputate a person is that 'people tend to be socially uncomfortable around amputees'.
Nuff said.

I have an autistic son, does anyone really think I give a fig about making people socially uncomfortable.

Malky said...

"Who doesn't really get disability rights"?

I beg to differ. I completely back the rights of disabled people, but when it comes to people who are not biologically capable of making decisions for themselves, the decisions have to be passed off to the guardians who are responsible for that person.

This sort of decision is up to the parents to make, and it doesn't cross any sort of social boundary since it is a reasonable conclusion to reach, given that the surgery does not remove anything that has any value to Ashley X.

"thinks that a good reason not to amputate a person is that 'people tend to be socially uncomfortable around amputees'."

What, exactly, is the problem with removing useless organs?

Attila The Mom said...

Sharon, thanks for the shout and writing such a fabulous post.

My mind is still boggling over this. They might as well kill her as cut pieces off at a time.

Much more convenient, I'd say.

Kassiane said...

Uh, Malky, you just showed how little you understand disability rights.

Supporting the rights of disabled people means ALL disabled people, not just the ones who yell for you to sit down, shut up, and listen. People with COGNITIVE disabilities, not just people who use chairs and suchlike. PEOPLE LIKE ASHLEY.

You also have yet to explain how they demonstrated her cognitive capacity. An MRI won't do it. An EEG won't do it. There's no praxis-free test of cognitive skills on the market that I'm aware of. So where's the eye gaze board? Oh wait. They didn't try that because 'static encephalopathy' means 'won't develop'. Wonder if the kid I know who has the same dx knows that, she progresses fine...

As for what body parts are or are not important to Ashley, I assume no one asked her. they don't know HOW. They didn't TRY to know how.

Sarah said...

I blogged this. Sharon, you set me thinking and I need to think some more. My gut reaction is that this is just horrific.
the blog is: http://ethicallyspeaking.blogsome.com/2007/01/06/ashley-x-pillow-angel/

Allie said...

I find this really difficult to get to grips with. I can understand how hard it must be to feel it getting harder and harder to care physically for your child. But this does look so much like an attempt to keep someone as a 'perpetual child' and it was not done at no risk to her life. Surgery is never without risk and that is why you need a medical reason to do it and the clear informed consent of anyone undertaking cosmetic procedures.

In this case there was no medical reason and it seems to be the ultimate example of seeing a disabled person's body as the 'problem' and 'medicine' as the solution. I think we, as a species, should respect the integrity of everyone's body and put our ingenuity into technology to enable everyone to participate in social life as much as they wish to.

Personally I can't understand how 'menstrual cramps' are such a big issue and yet a hysterectomy (major surgery) was not? The thought of my nine year old going through such a major assault on her body makes me feel ill. Likewise, going through puberty (a gradual, developmental process) or having major surgery and massive hormone doses - which sounds more physically and emotionally painful? This was major intervention in a healthy body. I don't condemn any parent who is doing their best but I think we ALL need to be worried by such action in a world that often views disabled people as the problem and god like physicians as the answer.

Malky said...

"Supporting the rights of disabled people means ALL disabled people, not just the ones who yell for you to sit down, shut up, and listen."

There is a difference between "having rights" and "never getting surgery".

Someone has to make the decisions. Nine times out of ten, that would be the person who is most affected by that decision (Ashley, in this case). But when that person cannot make those decisions for herself, that obligation needs to passed on to somebody.

I am not saying that Ashley has no rights. I am saying that Ashley's parents have the right to make this sort of decision for her.

"As for what body parts are or are not important to Ashley, I assume no one asked her. they don't know HOW. They didn't TRY to know how."

You don't know that. Neither of us know what tests they have performed or how they reached the conclusions they did.

Kassiane said...

Generally speaking, not having unneccesary surgury IS a right. Hell, I don't feel pain properly and have a family history of girly cancers, should we remove my plumbing? I think not. It's called regular exams. They aren't fun for any woman but last I checked NEITHER IS RECOVERY FROM SURGERY.

Note also that people with extraordinarily low muscle tone (like Ashley) and with neurological disorders (again, like Ashley) are astronomically more likely to have complications from anesthesia, just from a practical point of view. And unlike me (also having anesthesia Issues, namely anesthesia awareness) SHE can't say "Hey jerkwad, I can feel everything you're doing so drug me more" or, alternately, "I CANT BREATHE". And it'd be just so wrong for me to even suggest that a dark part of a parent's soul let their mind wander to the place of 'maybe she'll die on the table', right?

And then the testing...

We DO know that they didn't do a reliable method of testing her mental development. If her praxis is as bad as they say it is, it doesn't exist. And it doesn't sound like they did an adequete physical therapy assessment, nor a particularly good genetic workup (usually people want to know the CAUSE of these things!). THAT is all apparent, as well as the utter lack of a good SLP communicative assessment.

It's just so much EASIER to accept the 3months guess and live with a perpetual infant. Then doing dehumanizing things isn't as BAD, 3 month olds arent SENTIENT.

Or are they?

Let's ask Ashley.

Sharon said...

Thanks for making all those great points, Kassiane. I can see why you wouldn't want to have anything to do with that hospital now too.

Ebohlman, I get your point about the 'Perpetual Virgin' thing from the way they spoke about her on the parents blog, combined with the photos, the 'Pillow Angel' name, and the beatifying of her saintly presence.

Larry, female genital mutilation is barbaric, and it's sad that more people who are aware of that can't see the terrible harm in this.

Allie, some people seem to ignore the risk involved in this surgery. They say the '3 month mind' thing means if the parents think it's for the best, then that's all that matters. Kassiane has given an excellent dismissal of that argument.
I have also tried to imagine my daughter being put through this and it is horrifying.

It would be terrifying if this was to become a common-place solution. Many service providers might thinks it's a great idea; a one-off surgery and hormone regime would save money to be spent on proper equipment and support.

The parent's blog actually sounds a bit like a sales pitch for this, they say they want to enable other parents to do the same as them.

Thirza said...

You have to ignore Malky, s/he's been making the same points everywhere and there's no point in reasoning with him/her since s/he's already made his/her mind about who intellectually disabled people are. The fact is, ANY of us could end up with the same disabilities as Ashley, all it would take is a serious head and spine injury. It disturbs me to see people who never realize at some point in their life they will also have disability issues.
Thanks for your comment by the way, and I am also glad to see more and more people with similarly disabled people in their lives speaking up. If we don't speak up on behalf of their rights, who will?

Qalballah said...

I really think this is a matter for the family and I only wish them well. It should not be a backstabbing public debate.IMO

Sharon said...

Qalballah, I think this should be open to public debate. It's not backstabbing, this is all in the public domain. The parents went public when they wrote their blog. Have you seen it? There's a long list of reasons as they attempt to justify what was done to Ashley as well as loads of her photos. Their other children have had their faces blacked out.

They also have written;
"Clearly, the “Ashley Treatment” is not for all disabled kids. Our daughter’s condition pointed to a clear decision where the benefits far outweigh the risks and short term discomfort associated with surgery. Families of other kids may likewise find the “Ashley Treatment” to be the right approach for them. It is our hope that this treatment becomes well-accepted and available to such families, so they can bring its benefits to their special needs child if appropriate and at an optimal age in order to obtain the most benefits."

This has to be discussed now before this procedure becomes common place. With so much of public reaction showing that people back these parents, this could happen more often. That, IMO, would be dangerous. We need to get these points out and explain why it's wrong.
Also in the parent's blog, they wrote;
"At the same time we’re surprised at the volume and magnitude of the critical comments. We carefully reviewed these comments: they seemed to us to be gut reactions without depth or rational consideration of the situation, the treatment, or the motivation behind it, which we hope this article sheds more light on."
I'd like to show that the reaction of the people who've commented here are considered and rational. The article just she light on their misogynistic and disablist reasoning.

mike stanton said...

Hi Sharon
I am with you on this one. The girl cannot speak or feed herself so out with the tongue and the teeth! She cannot move her arms or legs so let's amputate. Away with unnecessary organs!
What utter crap!
I work with people who have similar disabilities. They have personalities. We communicate. We have fun together. They are my friends. I would never do that to a friend to make my life easier.

Kassiane said...

lgwA 'treatment' as radical as this needs to be ripped to SHREDS by MULTIPLE ethicists, disabilty advocates (with and without disabilities), and general people before it is even CONSIDERED ideally.

Obviously that didn't happen. It hit a medical journal in October. Ashley was anonymous there. Her PARENTS are selling it like it's the best thing since heart surgury or something. It's like they aren't just JUSTIFYING it but saying "hey! If more people do this then you CAN'T say what we did was disgusting because you have to say it to 100 people!"

But I will say it to 1,000,000 if I have to. I wish Ashley well. I think her parents and doctors need to retake ethics.

Malky said...

"Generally speaking, not having unneccesary surgury IS a right."

That doesn't entirely make sense. Do you mean 'not being forced to have unnecessary surgery' or 'not ever having unnecessary surgery'?

If the former, she is being 'forced' to have this surgery in the same way that she is 'forced' to eat every day. Her entire existence is forced upon her, sadly.

If the latter, then that's even more absurd. Of course people can have unnecessary surgery if they want.

"Hell, I don't feel pain properly and have a family history of girly cancers, should we remove my plumbing? I think not."

Well, if you wanted to, you could. I wouldn't suggest it, but it's your choice, not mine.

"Note also that people with extraordinarily low muscle tone (like Ashley) and with neurological disorders (again, like Ashley) are astronomically more likely to have complications from anesthesia, just from a practical point of view. And unlike me (also having anesthesia Issues, namely anesthesia awareness) SHE can't say "Hey jerkwad, I can feel everything you're doing so drug me more" or, alternately, "I CANT BREATHE"."

That is certainly a risk, but since neither of us were there when the surgery was performed, I fail to see how we can comment on whether or not proper procedure was followed. All we can do is debate the ethics of the procedure itself.

"And it'd be just so wrong for me to even suggest that a dark part of a parent's soul let their mind wander to the place of 'maybe she'll die on the table', right?"

It does seem both cruel and unfounded.

"And it doesn't sound like they did an adequete physical therapy assessment, nor a particularly good genetic workup (usually people want to know the CAUSE of these things!)."

What part of it lead to this conclusion?

Simply because they did not mention it does not mean that it did not happen.

"Let's ask Ashley."

If only we could, then we could know what she truly wanted. However, in lieu of that, we are forced to entrust others with the right to make these critical decisions for her.

Malky said...

"The girl cannot speak or feed herself so out with the tongue and the teeth! She cannot move her arms or legs so let's amputate. Away with unnecessary organs!"

Why not?

Alexandra said...

you have no right to judge Ashley's parents.They did what they thought best.Obviously,as they say, they had no trouble making that decision...
I am a single wookring mother or severely disable boy, who is adorable and although he is over 2 years old, his development is like a newborn and cannot do anything by himself.
I am doing my best to teach his little brain and get him involved with the best care, Special Needs school, therapists , doctors and neurological treaments (he has Epilepsy- 3 seizures a day and takes 3 different medicines for it)- But most of all I love him and accept him for just how he is.I will never ever intrude in his pure Angelic body like this..and like you say i hate the term ' Pillow Angel'- it is disturbing because this is the opposite that I am working so hard for my son.I want him to be as mobile and have as much normal life as possible.I know as he get bigger and heavier it will get hard.However, I am grateful for every precious moment I share with him and who knows! One day he may wake up and prove all doctors wrong! He may walk and talk and hold a toy in his own little special way! Love is a healer.Unconditional Love.
I hope my sweer son and Ashley may never suffer or be in pain and feel all the love their parents have for them...

To all the 'Peace Angels' outthere and their loving carers xx

Sherbet Lemon said...

They are denying the child-a fellow human being the right to live, the right to be as normal as she can be-her right to be human.It is inhumane to change the course of nature,and eridicate all hope for miricles.Many a time, doctors have prophesized the life span of patients,proclaiming that there is nothing modern medical technology can do for them.However many have lived past the prophezied time nd lived life to the fullest.Asley x once had a hope.But now it no more.
Is this really Love?

Sherbet Lemon said...

People have feelings..who is to say that she cannot feel...Asley is like us, a human being.Created by the same God, and special in his very own eyes.