The “Ashley Treatment”
January 5th, 2007I wasn’t going to write about this because it upsets me too much, but it doesn’t seem like any of the major bloggers are exactly jumping on it (I lie–there was an Alas post eventually), which shocks and disturbs me. I expected this to be immediately addressed by at least a few people, but…the only person to do so was brownfemipower. (As usual.) So here I am, since no one else seems to actually care and I just can’t believe it.
I don’t even know what to say about this. There are just no words I can coherently string together well enough to express my total moral outrage.
Short version of events as told by the BBC (linked above):
Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.
Along with hormone doses to limit her growth, Ashley’s parents also opted for surgery to block breast growth and had her uterus and appendix removed.
They say the treatment will help to improve her quality of life.
I’d highly recommend looking at the parents’ blog since it’s a little more complex than that, but I really don’t want to spend a lot of time just regurgitating the details. You can read for yourself.
Here is what I think: No one should be subject to such drastic medical procedures if they are unable to consent and it’s not absolutely, demonstrably necessary. Period. It doesn’t matter what a person’s level of cognitive development is, everyone is deserving of basic human rights and that includes the right not to have organs removed unnecessarily. (More on that later.) Here’s a choice quote from the BBC article:
George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies said: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity.”
It does not matter if she does not have the cognitive ability to protest or understand what is happening to her. That does not mean she is not deserving of the same basic rights as all other people. If anything, this means she is deserving of further protections than normal since she cannot advocate in her own self-interest.
Furthermore, the justifications her parents give are, frankly, BS. No matter how her growth might inconvenience them, I’m sure they could work around it. It might be more difficult to move her around but I’m sure they’re creative people and they could come up with a solution — after all, didn’t they have to figure out how to care for her to begin with, after realizing how severely disabled she is?
Arguing that preventing the development of her breasts is a preventive measure strikes me as wrong. Their (medical, we’ll get to the rest later) reasons are: “Avoiding the possibility of painful fibrocystic growth and future related surgeries. Women in Ashley’s lineage have a history of fibrocystic growth. … Avoiding the possibility of breast cancer. Ashley has breast cancer history in her family.” There are plenty of people at risk for different diseases and cancers; what is important is regular screening. It is not routine and does not make sense to simply remove body parts as a preventive measure just in case cancer develops.
The only preventive measure they are taking with which I can agree is the removal of her appendix. It might be difficult or impossible to tell if something went wrong until it was too late, so that procedure seems sensible to me.
The argument for the removal of her uterus is as such: “Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it.” There are treatments available such as certain kinds of birth control which could prevent her from menstruating without the need for such an invasive procedure. This is unnecessary in the extreme. (Although I am of the opinion that menstruation is a natural bodily function which should not be inhibited simply because it’s “gross”. If a person finds it extremely unpleasant or painful, that’s different and more than justified. That said, even if I don’t agree, people can certainly do what they want with their bodies–keyword: theirs.)
Then there is the justification that “she won’t need it”. Technically, I suppose, no. Just because she will not use her uterus for bearing children doesn’t mean she “doesn’t need” it. She probably will never walk, either; does that justify amputating her legs? Everyone has a right to basic bodily integrity. There is no reason to remove a healthy body part simply because it will never be, in the most basic utilitarian sense, “necessary”. This argument makes very little sense, and strikes me as extremely callous.
Then there are the other reasons. The frightening ones:
Additional and incidental benefits [of the hysterectomy] include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused…
Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.
This is, unfortunately, a very real concern. However, I think their approach is misguided. For one, pedophiles will readily abuse her even if she continues to look like a child when she’s older, and not only women with large breasts (or who are even conventionally attractive) are raped. If someone is sick enough to sexually abuse someone so severely disabled, I highly doubt the presence or absence of breasts will have much to do with it.
As for the hysterectomy: I see no reason why this matters. All this will do is prevent her from becoming pregnant should she be raped. That will not change the fact, in that eventuality, that she would already have been raped. That aside, there are plenty of other ways to prevent or end a pregnancy should one occur, none of which strike me really as more or less morally questionable than this course of action already is. This is another case where, as a preventive measure, I doubt it does much real good.
These justifications here deeply disturb me because of how they buy into common misconceptions about rape and rapists’ motivations, and they will do little to help any actual problems which could arise.
I think these procedures are medically unneeded and unethical. But…and this is important…I do not think the parents are bad people. I’m sure they love their child and are trying to do the best thing for her that they can, even though I believe their actions are wrong. It’s very clear that they think this is the best course of action available to them, and the fact that we live in a society where there are not many other readily available options is deeply unfortunate. I do not know that there are many practical solutions which this family can afford. I only know that this treatment is not an ethical solution — and as someone who is deeply concerned with the rights of all people (and other living things) I can do nothing else but condemn what has been done to this girl.
January 5th, 2007 at 1:13 pm
I blogged about this at BlogHer, fyi. I focused more on the rhetoric of the parents in a statement at their blog, than the surgery itself, but I included a pointer to Women of Color Blog’s piece.
I agree with you about her rights as a disabled person.
January 5th, 2007 at 1:16 pm
I don’t really hang out at BlogHer. Good to know.
January 5th, 2007 at 1:35 pm
I agree with what you are saying here, and in my posts on Rachel’s Tavern and Alas, I didn’t take time to outline all my objections. I agree with your general points about the sexual and gender issues–those two quotes you highlighted flabbergasted me.
January 5th, 2007 at 2:38 pm
Rachel: I was just glad to see you post about it!
January 5th, 2007 at 5:50 pm
I also wrote a blog about this today, my sister’s intellectually disabled so I have a different take on it, but yes, it’s fucked up and disturbing. Even writing about what’s wrong with it felt like paraphrasing my thoughts, there is so much going on here and it says so much about us as a society.
January 5th, 2007 at 10:59 pm
Thanks for tipping me off, Thirza! I think your input is especially valuable since you have experience with a similar situation.
January 6th, 2007 at 6:20 am
None of the things they’re doing (even if they were okay, which they’re not) will even prevent abuse, not even in the slightest. If anything, they will invite it.
January 6th, 2007 at 8:45 am
Ballaexistenz: I don’t know that I’d say that, that doesn’t seem fair. I don’t think it’d make it any easier than it would be already.
January 6th, 2007 at 8:48 am
I have a disabled child and while I don’t write about or profess to know much about feminist theory (apart from reading the odd blog and book, and of course, living life as a woman) I was stuck by how sexist and disablist this story was. The father’s blog, while claiming that all the procedures were carried out solely for the child’s benefit, made it seem even worse when I read all his strange views on puberty and breasts and how to tackle potential abuse (by making the female seem less attractive, apparently…yuck.) I’ve blogged about it too.
January 6th, 2007 at 3:01 pm
The parents’ blog squicked me really badly, and then the fact that fifty percent of the people discussing this issue either see nothing wrong with this or ar eon the fence just pissed me off a lot. Sure, they can move her around if she’s nintey pounds and she won’t get pregnant if she gets raped (because getting raped won’t suck /sarcasm), but personally, my quality of life is at least partially contingent upon retaining my dignity as a human being.
Blah. I’m sort of incoherent over this.
January 6th, 2007 at 4:33 pm
The things that get me is first, the “alterations.” Then the “ethics committee.” of doctors that agreed to these, and third, the fact that so many feminists don’t seem clear on why this is so disturbing for those of us with impairments.
January 7th, 2007 at 5:17 pm
Thank you for blogging about this. I am so disturbed by this situation and cannot write concisely about it. Removing the breast tissue and the uterus in order to avoid natural female development… ugh, utterly wrong. I feel like the doctors (and supporters) in this case have pushed the rights of the disabled and women back decades.
January 7th, 2007 at 6:08 pm
Thank you. As a woman with a disability I’m appalled by some of the defenses I see of this, even in feminist spaces. It’s wonderful to finally find a blog where no one’s “what if”-ing, or “I was a caregiver and it’s so lovely to be able to carry someone”-ing. Thanks.
January 8th, 2007 at 7:08 am
Thanks for the intelligent post. Likewise, I find it hard to articulate my outrage on this travesty. I am disgusted on so many levels… the ethics, the blatant misogyny, the sheer cruelty … But probably more than anything I am bothered by living in a country that thinks this is acceptable. I would like to hear what disability advocates have to say about this case. And why was it so hard for me to find a feminist voice?? You are one of only a handful I found, and I have been reading about this all weekend.
January 8th, 2007 at 11:26 am
That site disturbs me on SO many levels. It is nothing short of dehumanizing to inhibit physical growth and totally obliterate Ashley’s sexual maturation in order to “protect” her. It is very difficult for most folks to admit that people with severe disabilities are capable of sexual feeling or function. I note that she has a sister, and I shudder to think of the psychological harm that would come to her when she realizes her own parents changed her sister’s biology that much in order to make THEIR lives easier. As a mother, I am crushed that another mother would allow this to be done to her own daughter. If the technological advances were made that could bring about a higher level of brain function, would they not allow them to be made available to her? Surely she would realize just how much she has been wronged.
I weep for this child! This society so quick to cover up, change, correct and create ease to the detriment of natural processes…a line NEEDS to be drawn.
January 8th, 2007 at 2:28 pm
Until you “walk the walk” you can not make a judgment on this. Ashley is not just a “disabled” child, nor is she mildly handicapped. She is severely disabled - with the mental status of a 3-month old. All she knows in her world are her parents and family members - she is lucky enough to be born into this family who love her and cherish her for who she is. There are many families who would turn this child away simply because it is too much work. Ashley’s family wants to keep her with them and involved in daily activities - and the easiest way to do this is to carry her. They should be applauded for doing whatever it takes to keep her with them instead of an institution.
My 3-year old son is similar to Ashley: he can not support any part of his body (even his head), he is blind and requires 24-hour care. He “only” weighs 35 lbs and is 2/3 of my height - but I still struggle to carry him longer than 10 yards. The only thing that I absolutely know is that he LOVES to cuddle and be held. I can’t bear the thought of the day when I am not able to carry him, or curl my body around his. The reality of the situation is that he WILL grow, there is MINIMAL support for families of disabled children and the COST of the equipment that these children need is astronomical. Not everyone can get a house built for them with pulleys and lifts to assist them in their caring for the time when their children become 200 lb “adults.” Basic human rights should apply to the disabled: it should be a basic human right that the disabled can be cared for in the proper manner in their own home; where people love them and cherish their existence.
January 8th, 2007 at 9:30 pm
keets, so you’re saying insurance would more easily cover a vasectomy for your son and other invasive surgical procedures and hormones than it would help with providing accommodations in your house?
If that is so, then I can perhaps forgive poor parents for choosing surgery rather than nothing. However, if that’s the real issue here it should be presented as such — mutilation and violence done to human bodies, agreed to as an absolute last resort.
Also, you don’t mention the mutilation of Ashley’s breasts or removal of her uterus. What major organs are you planning to have excised from your son’s body that have nothing to do with reducing his body weight?
January 16th, 2007 at 11:10 pm
What most of the posters here seem to be ignoring is that the treatment will improve the quality of Ashley’s life in very practical ways. It will help prevent bedsores, physical pain, and disease. It might be medically unnecessary but it is beneficial. I think her parents acted very sensibly, although clearly it would be inappropriate for someone less disabled than Ashley. I fail to see any detriments to the treatment.
January 28th, 2007 at 2:38 pm
Why isn’t it “mutilation” when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints? Nobody ever died directly from scoliosis or back injury or misalined jaws or ear infection or weak knees. Sure, it’s painful and life altering but nobody ever questions a parent about “barbaric” procedures to make corrections through surgery because this is what we expect from the medical profession.
Like Ashley’s parents, I’ve been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. I can’t imagine Elisabeth missing out on our annual backpacking adventures up the mountains when she reaches her maturation point in height or weight. I can’t imagine her lying on the floor or in a wheelchair as an adult because she’s too heavy to lift or transport into kyak or canoe or horse. I can’t imagine her going through life without having the same opportunties of her siblings and peers. It would kill her to be restricted to a wheelchair or in supine position all her life.
I don’t understand why is everyone against using medical breakthroughs for people if it will enhance their quality of life? As for using these same procedures so that parents can better assist their child, I don’t see anything wrong here either. Go ahead and talk about what is “ethical” and what is “dignity” after wearing a diaper instead of using a toilet for one whole month relying on everyone else except yourself to change it. Go ahead and talk about what is “ethical” and what is “dignity” after tightly binding your body in a burlap bag having to rely on others to take care of you.
It’s easy when they are young, but what about when our kids are 30? It’s not like we’re experimenting on our kids. People are blowing this “ethics” and “dignity” out of proportion and shoving their value systems and religion down our throats so much that they are actually interfering with progress. Most of the time, our kids are invisible to people. It is only when their disability becomes the focus that they are visible to others. And most times, what people see is what we dont’ want them to see — on object of pity.
Instead of people looking at our kid’s emerging abilities, the focus is alway what they can’t do which is often times used as the basis for planning their life instead of letting the parents and advocates having control. Develop a plan for kids based on what they can’t do? This makes sense? Do we tell kids they can’t play baseball because when they are 4 they can’t hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability.
Here’s my analogy. Let’s say typical children are like apples growing on limbs from trees and our children are like carrots. The common need is light, nutrients, and water. The conflict arises for the carrot because the tree blocks out the light and zaps the water and nuturients. We wouldn’t cut down the tree or let the carrots die from neglect, would we? But when the people who care for the apple trees try to tell the carrot growers what to do, this is wrong. We need to work together instead of working against each other.
January 29th, 2007 at 12:28 am
I agree that this is a very widereaching and inflammatory issue. i feel that I strongly believe in disabled and feminist rights. However, as a parent and a former caregiver, I do have to strongly concur that a reduction in size for Ashley would likely be a vast improvement in her life. Moving disabled adults in carehomes requires the use of hoyers (mechanical lifts), and uncomfortable rolling and pushing. Many disabled adults in care homes have their activities greatly limited because of the difficulty in simply moving position. Often times things like diapering and changing position will be done as non-frequently as possible b.c. of this. I think the treatment is very agressive, and not a completely correct move, but I would have a hard time believing that it is not going to cause her to receive MUCH better care throughout her life, and to stay with her family longer as opposed to moving to a home. The removal of breast buds was the most confusing to me, but then I remembered a woman I worked for who was in a very similar state to Ashley, and had large breasts, and it was true that she constantly had sweat rashes under her breasts. that is perhaps not a great reason for such a severe surgery, but perhaps her parents are telling the truth that they are in contact with wheelchair straps. I guess what i’m trying to say is that, even in the best of circumstances, it is VERY challenging to be a disabled adult in our society, especially of Ashley’s caliber. As a caregiver, I can say that quality of care is OFTEN affected by size, and although we may find fault with that, it is a reality. This is a very confusing issue, but i just had to give my 2-cents to say that i hope people can keep their minds somewhat open to what the parents have done, even though I do not completely agree with it myself
February 24th, 2007 at 5:26 am
I’ve worked in an institution for elderly people with neurodegenative diseases, some of them were also wheelchair-ridden or bedridden. Lifting and carrying them was heavy work, which meant that often they were only bathed once a week (even if they were totally incontinent), and often they wore the same diaper throughout the day: in the morning the carers (2 of them) removed the dirty night diaper, sponged the person’s body perfunctorily, then put a clean diaper which would only be changed in the evening.
Bedsores were also a problem (sometimes elderly people die from the consequences), all the more that even people who could have sat in a wheelchair spent the whole day lying in bed on their back, looking at the ceiling, because of lack of staff. Alternatively, if they get a wheelchair, they spend the whole day watching TV in the lounge (1 set for all the patients, so they can’t choose the programme).
Some male patients behaved inadequately towards female patients (or carers), this is especially annoying when the male patient isn’t bedridden or in a wheelchair, because the staff can’t supervise what they are doing, so they were chemically castrated through high dose of neuroleptics, and at night the female patients were locked up in their rooms, to protect them from the male patients.
I’ve also seen male carers (you have to hire male carers, because of all the lifting and carrying involved) behave inappropriately towards female patients (withered old ladies), spanking or squeezing their buttocks, or fingering their breasts needlessly.
I agree that Ashley’s body would still attract a pedophile, but the whole purpose of the treatment is to avoid her growing so large and heavy that her parents would have delegate all the physical aspects of caring after her to a hired third party, and to preserve her quality of life: daily bath, clean diapers several times a day, change of position, hugging, interaction with other members of the family. Also some parents can’t afford to hire a carer, nor to buy all the equipment that is necessary to look after adult disabled people. I live on the 6th floor of a building that has no elevator, I’d be in a fix!
Disabled people live longer lives, thanks to the progress of medecine: yet their parents don’t grow any younger themselves, and some have to warehouse their children against their will, because their own health has failed them.
As to breasts and periods, I fail to see how their absence mutilates Ashley. We don’t think twice about sterilising our dogs and cats (having to keep a young hyperactive deerhound locked up for a week because she has her periods is very trying; besides, the dog thinks she’s being punished and is utterly miserable, and you can’t explain the matter to her).
March 19th, 2007 at 8:04 am
I would just like to ask you a few questions… If you had a child that was ill with the flu-severly ill now- and wanted to be held..would you hold her/him? If that child weighed 200 pounds-would you hold him? would you be able? Would that child feel alone or not understand that you couldnt hold it?
If you had a small child who wanted to take a bath, go outside for a “walk”, go to walmart with you…. would you take a baby that weighed 180 pounds everytime that you went to walmart and the grocery store? What about a 3 month old that weighed 10 pounds? would you hire a babysitter for your hour mall run? would you put that baby in the bath by yourself or wait until someone was there to help?
I am a nurse -at one time a respit nurse that cared for a grown man with Lou Ger disease-he could barely move his limbs-wasnt able to care for his self at all- but his mind was fully there– i was one of the only nurses that took the 45 minutes to get this 6 foot 220 pound man into his wheel chair and take him outside-but he never asked me because it was so much work-he didnt want to “put me thru it”…his other nurses were afraid of the hoists…they were worried of causing him injury, or didnt feel strong enough. that man didnt get to go to church like he wanted-his wife just wasnt able to care for him the way that she wanted and he hated the thoughts of having strangers help him with a bed pan.
The point is- if that man weighed 100 pounds-we would have done 3 times more than what we did and I can guarentee the other nurses would have too. Is the quality of life better for him to lie in hnis room 92% of the time because of his weight, size and limitations? Or is it better that he is able to go to walmart anytime that he wanted, go to church and go for a “walk” in his whell chair because it only would have taken us 10 minutes to get him ready to go? and in and out of the car? that is another story all together-that man had to buy a full size van and then spent over 4000.000 on customoizing so that he could fit-his head was too tall…
what if ashleys parents werent financially able to do all this-private nurses-a special van? then what? mimss ashley stuck in her room for 92% of her life? I am sorry-but those surgeries which were preventative anyway, and didnt cause her nearly as much pain as the cancer she could have gotten, or the endometreosis-which i suffer from! very painful! -only lasted the short amount of time for recovery where as her ability to be cared for well, go places, take baths, and enjoy family time and visits to family members that may live away is a lifetime of happiness..
what defines your happiness? or a childs happiness-that is after all what she “thinks” she is……???? is it the hopes that one day she will get breasts? is it that she just cant wait until she has a period or gets overweight? Or is it time with family, holding, nuturing, and love? I think you need to turn the tables and think honestly how you would care for a 200 pound child, and where you would or wouldnt take him?????