The Ashley Treatment, Revisited
Ashley X is a Seattle area girl whose parents, fearing how to take care of her as she grew older and bigger, had doctors (including endocrinologist Dr. Daniel Gunther, who died last fall) perform the “Ashley Treatment,” in which her uterus and breast buds were removed and estrogen given to her. The “treatment” occurred a few years ago and was described by Ashley’s parents online on a website in which they referred to her as a “pillow angel” which they call a “new category of disability” and which is defined as:
“people with a cognitive and mental developmental level that will never exceed that of a 6-month old child as well as associated extreme physical limitations, so they will never be able to walk or talk or in some cases even hold up their head or change position in bed.”
Upon hearing about the “treatment,” many disability advocates (such as Not Dead Yet) and disabilities studies scholars began an often impassioned public discussion about the ethical implications of the procedures performed on Ashley.
In a March 12th email interview with CNN , Ashley’s parents (who have remained anonymous to “protect the family”) describe how she is doing and defend the medical procedures involved in the “Ashley treatment” have “kept her small.” This is their description of her:
Ashley is now and will always be dependent on us in every aspect of her life: On an hourly basis we give her a position change and prop her back on her pillow; we make sure she is well covered and pull her shirt down to cover her tummy; we wipe her drool, etc. Also there are diaper changes, tube feedings, dressing, bathing, teeth cleaning, stretching, entertainment, etc.
…….
Thankfully, the “Ashley treatment” went smoothly, and it has been successful in every expected way. Her recovery from surgery was quick and uneventful, the scars are barely visible. There have been no side effects to the estrogen therapy. Ashley did not grow in height or weight in the last year, she will always be flat-chested, and she will never suffer any menstrual pain, cramps, or bleeding!
Ashley’s parents say that the “treatment” is “relatively safe” and that it has “significant and lifelong benefits that can prevent serious pain and suffering and improves the quality of life for children like Ashley.” Disability advocates are dismissed as promoting an “ideology” that does not address the “extreme case of pillow angels”:
We are in the unfortunate situation today where activists with political power and motivated by their ideology have successfully taken a potentially helpful option away from families whose pillow angels might benefit. (See this activism Web site.)
A collective agenda/ideology is being shoved down the throat of all individuals with disabilities, whether it serves them as individuals or not. This is disturbing in a society that believes strongly in the well-being of children and in individual rights. Pillow angels should not be deprived of this treatment when their parents and their doctors have carefully considered the options and concluded that it would be of benefit.
It is clear that Ashley’s parents believe that they have done the right thing, and of course one can’t speak for other parents and for the situation that they find themselves and their child and family in. However, I think that Ashley’s parents’ attempts to draw a line between their daughter’s disability and that of anyone else with a disability, of whatever “severity,” is an unfortunate position to take. By choosing to be public about the “treatment” and their reasons for having it done, Ashley’s parents have, like it or not, stepped into the ring of debate and dialogue about disability in our society today. Considering what they refer to as Ashley’s “extreme” disability, and also to what can be said to be the “extreme” nature of the medical procedures performed, the case of Ashley and the “Ashley treatment” raises profoundly difficult ethical questions about medicine and treatment, about science and society, about healing and suffering, about what it means to be human.
What does the “Ashley treatment” say about how do we treat the weakest?
In response to an op-ed defending the “Ashley treatment” by Princeton University philosophy professor Peter Singer, I wrote this last January:
Tags: asd, asperger, autism, Disability Rights, Family, not dead yet, parents, pdd-nos, peter singer, pillow angelSinger wrote about Ashley in A Convenient Truth, an op-ed in the January 26th New York Times. Since Singer is infamous for arguing that severely disabled infants ought to be killed (see Taking Life: Humans (1993) ), it is not surprising that he thinks Ashley’s parents did the right thing. The treatment was carried out in her “best interest,” Singer writes in answering the objections of critics to what some have referred to the mutilation of a young girl. Noting that Ashley’s parents have written on their blog that “her treatment is not for their convenience but to improve her quality of life,” Singer writes:
….. it is also true that the line between improving Ashley’s life and making it easier for her parents to handle her scarcely exists, because anything that makes it possible for Ashley’s parents to involve her in family life is in her interest.
I am not so sure of how “true” the two points Singer makes here are. As the mother of a disabled child, my son Charlie, it is the case that he relies more than heavily on my husband Jim and me, just as Ashley is wholly dependent on others, and in particular her parents, for her care. But I do not see how “making it easier for her parents to handle her” can be so quickly equated with “improving Ashley’s life”—the changes to Ashley’s body would seem to have been performed primarily for the sake of her parents’ “lifestyle choices, as Jim writes in Peter Singer’s Pillow Angel. I am not entirely sure how a “smaller” Ashley can be equated with involving her more in family life, as Singer does not specify what he means (perhaps he is suggesting that this “smaller” Ashley might more easily be transported from place to place, so that she might have access to more family activities?). I can say, and with surety, that it is possible for a family to change what it understands to be “family life” in order to accommodate, to best provide for, the needs of a disabled child, whether moving out of one’s own house and into one’s elderly, and disabled, in-laws’ basement so that that disabled child can attend a school that best suits him, or choosing to engage in activities that best suit a disabled child’s abilities and preferences.
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POSTED IN: Disability Rights, Health
22 opinions for The Ashley Treatment, Revisited
a bishops wife
Mar 14, 2008 at 7:51 am
I remember this sad story. What must it be like to be at the mercy of people around you?
It always makes me think of how traumitized I felt one day….I was in a store and mother was there with her son in a wheel chair. Obviously disabled and people were stareing. Then someone “broke the ice” by saying “Is this your son? How cute he is” then the awkwardness went to an extreme as several other people began to comment because it made them “uncomfortable” to see him–
Why did they do this? I saw tears in the mothers eyes. I felt quite bad for her. These people went quite over board as they stared and then tried to excuse it. I still feel bad just thinking about it. What is wrong with people? Why are we so uncomfortable with this?
Marcie
Mar 14, 2008 at 8:54 am
Noone can know what the effects of estrogen are when a person doesn’t have a means of communication or movement. I became depressed due to birth control pills. I imagine what was given to Ashley would have been (or is, if they still have to give it to her) much stronger.
I have to admit, I used to be much like Singer, because I’ve seen the struggles my aunt and uncle have had to go through with a child with Patau’s syndrome (they apparently have never had Singer’s POV). I gained much of that famed empathy learning about my own disabilities and am a bit ashamed of how I used to think.
Club 166
Mar 14, 2008 at 10:08 am
…I am not entirely sure how a “smaller” Ashley can be equated with involving her more in family life, as Singer does not specify what he means (perhaps he is suggesting that this “smaller” Ashley might more easily be transported from place to place, so that she might have access to more family activities?). …
That’s exactly what the parents’ argument was. Following the same logic, it would be preferable to drug someone with Tourette’s syndrome until they were so sedated that they would not tic anymore. Then they could be able to be taken out in public more without disturbing others, and therefore included in family activities more.
Joe
Owl
Mar 14, 2008 at 10:42 am
I had thought the idea was that the girl had some trouble with independent movement. Not just a matter of coordinating movement to do what you wanted but problems moving-resulting in the family having to physically turn the child regularly to avoid the sores that come from a bed rest type care situation. When the family is responsible for every large movement a child who attains a full adult weight is much harder to deal with and keeping weight down lowers the necessity for institutionalization as the child ages-which is a direct benefit to the child.
Granted its been a while since I read up on this case so I could just be filling in mental gaps with what would make the story make sense but I’m pretty sure that’s what the idea was. I remember news stories covering this talking about the real shame in the story was that it was society (insurance companies, government, disability charity groups) failed to pay attention to the fact that for children like these to grow to full size the family needs to purchase very expensive pieces of equipment to assist in raising, turning, and moving someone who is sometimes much larger than themselves.
I remember being somewhat confused by some aspects of the reporting… wondering why they thought removing her uterus would reduce the chance of sexual abuse by future care takers…which I again couldn’t pin down on them or bad reporting about them.
I do find it disturbing that they should advocate this treatment type as if it was some wonderful thing that others should be doing to. Perhaps it was needed in their case… but I almost get a sense that they are saying physicians should be suggesting it to more people. Just find that confusing. Even if it was right for them doesn’t mean it will fill the needs of others.
Eleanor
Mar 14, 2008 at 10:56 am
What has always disturbed me about Ashley’s situation is that her parents, who obviously rose to the challenge of having a disabled child, apparently did this because they could not face the challenge of dealing with a disabled adult. Adults are bigger, adult women have breasts and menstruate–I guess it is hard to idealize them as “pillow angels” when they are allowed to develop naturally. I think of this as “designer disability”–alteration of a disability not for the sake of the disabled, but for the convenience of those around her.
Linda
Mar 14, 2008 at 11:16 am
Leaves me breathless. Inhumane and should be illegal. She is their daughter not their property. To me this is black and white, right and wrong…this is wrong. Disgusting.
speechgrrl
Mar 14, 2008 at 11:19 am
I was really profoundly upset by this case, as I guess a lot of people were, because I really see the stresses on both sides. I don’t think anybody should be subject to that sort of mutilation, especially if they can’t consent. Our children are not are dolls. But I have worked in the schools and in rehab settings, and from my exerience, there are many, many , many people in institutional settings strictly because they are too big for their families to safely assist them, that’s just how our system works right now. In those settings, it’s really hard to get and keep good staff for the pay that is typically offered. It’s also extremely difficult to maintain an environment with the appropriate level of stimulation. This “Pillow Angel” family (and by the way I really hate that “angel” moniker for people in “disability circles”. It’s a way of excluding people or explaining away exclusion. I’m an SLP and I can’t tell you how much angel jewelry I have received, and I get pissed of whenever I open a box and see an angel coming at me. And I know people are trying to be nice and I am always working on my skills in the area of forgiveness, but I got the most angels when I was working in a setting where my colleagues where very up front that they didn’t want to have anything to do with my kids. I also got a lot of awards there. ) But anyway, this “PA” family apparently has the social, cognitive, & financial resources to hatch & deliver this elaborate and time consuming plan, so I don’t know why they couldn’t use those same resources to come up with a better plan. If that was my child, though, and I really believed that nursing home care in the hands of strangers was to be her only option in the not too distant future, as I aged and started to struggle with my own faculties, I might make some drastic decisions. But I would hope that the people around me, the “pros”, would be more of a help in looking out for my child’s interests.
Teri
Mar 14, 2008 at 12:12 pm
Clearly, a lot of information is being conveniently left out to fulfill the author’s own agenda. She cannot do anything for herself Although she sleeps and awakens, and breathes on her own, she is unable to raise her head, sit up, hold an object, walk, or talk, and must be tube-fed. Her parents have nicknamed Ashley “Pillow Angel,” because she always remains where she is placed, which is usually on a pillow.
Even a sick person in a hospital is prone to getting bed sores, for this little child to be adult sized in her condition is inhuman! Which is crueler, for her to be left in bed with bed sores, monthly menstrual cycles where her parents have to change a pad or tampon every few hours in addition to the fact that she is diapered and tube-fed? Leaving her in bed because she is too big to be moved? I’m sure one can imagine how difficult it is to even help an adult who is elderly or somewhat incapacitated move about a space, let alone one in her condition. She is helpless. Yet without the above information, one would expect the parents just to let her grow to adult size and pick her up like He-Men and tote her about the house and outside?!? Or would you rather they just ship her off to a nursing facility where she is surrounded by strangers left to languish in a bed, complete with dirty diapers, bed sores, people who don’t care what happens to her and have many others to contend with, not to mention infections from feeding tubes and hospital surroundings.
Now ask yourself which is inhuman and cruel?
Kristina Chew, PhD
Mar 14, 2008 at 12:15 pm
@Teri,
Thanks for pointing out some of the questions that Ashley’s case raises for all of us.
VAB
Mar 14, 2008 at 1:08 pm
It is not apparent to me why being small and asexual is such an awful thing. Maybe I’m missing something.
Regan
Mar 14, 2008 at 1:26 pm
I have more unreconciled troubling questions than answers because I am not in the circumstances of either Ashley or her parents. I don’t have access to their family history, I don’t know what society realistically makes available or what other families in the same circumstances as Ashley’s feel about this or how they address the issues.
After I read this last night, the first thing that I thought was in this circumstance, “What would represent quality of life for Ashley?” and the next was , honestly, things like bedsores, hygiene and hospital care related issues (recently one our of in-laws died of Alzheimer’s and at the terminal care stage when an adult is is no longer able to cognitively participate and is bedridden and immobilized at home those issues take center stage). It is complicated and I don’t know what it would be like to do it for a lifetime rather than for a year. I don’t know if that comparison is appropriate.
No simple answers for me.
daedalus2u
Mar 14, 2008 at 1:26 pm
This is an extremely difficult situation. It isn’t like there are any “good” options, only the option that is the least bad. Sort of like the decision to have chemotherapy, no one “wants” chemotherapy, it is simply the least bad of a number of bad alternatives.
Removing her uterus doesn’t protect her from being sexually abused. It does prevent her from becoming pregnant under such circumstances. Such things do happen in institutional care. When her parents die or can no longer care for her, that is what will happen to her. She will be institutionalized.
There was a case a few years ago in Florida where an institutionalized bed ridden woman, mentally disabled to the point of being unable to communicate became pregnant. Obviously through rape because she lacked the ability to communicate consent. Jeb Bush intervened to impose his beliefs on her to “protect” her unborn fetus while ignoring any consideration of her rights and needs.
Patrick
Mar 14, 2008 at 1:50 pm
I have to admit that the first time I heard of this I was in the aghast group. (Perhaps it was even on a different blog.) Now I think I can better understand why this has been done, but please pardon if I don’t expound. I can’t claim outright that it is right or wrong either way.
I do share concern that the claim that ‘there have been no side effects’ with the estrogen therapy is too optimistic, and perhaps might be more carefully stated as there have been no apparent side effects at this time.
Good luck to Ashley and her parents, I hope everything really does work out as expected.
Emily
Mar 14, 2008 at 3:56 pm
It comes down to quality of life for the individual. What route guarantees Ashley the best quality of life? “Pillow angel” blather aside, would her QOL be at its best if she were large, institutionalized, experiencing monthly periods for 40 years and the attendant indignities of not being able to manage that herself, helpless to protect herself against pregnancy, at the mercy of people who are not her family? Would it be at its best if she were at home with her inevitably ageing parents, small enough for them to keep her well into their own twilight years, not being subjected to the risks described above but with no guarantees that she would live out her natural life in that environment and might one day find herself suddenly institutionalized? These are extraordinarily tough, specific, family-unique questions that only her parents can really answer.
The real answer otherwise is that none of us knows the answer. I don’t know how long this child is expected to live, how old her parents are, what their health or life expectancies are, whether she has siblings, aunts, uncles, cousins, other family members who could care for her…no answers to any of this. These parents thought they did have a solution that would provide their daughter with the best QOL a child with her condition could have for the longest time frame possible. I usually try not to second-guess parents when it comes to their healthcare decisions for their children. Many parents have to make tough risk-risk decisions for their children, from whether or not to pursue surgery for a condition or see if the child “grows out of it,” to see if that fever gets worse through the night, to see if the mind- or personality-altering drugs really will make things better in the short vs the long term. We ALL make these decisions, large and small. Ashley’s parents are doing what we all do: weighing risk-risk, the only choices we have sometimes when either outcome means a risk of ultimate harm in some way. Yes, it’s risky to remove a uterus and breast buds, to expose a growing body to estrogen. But it’s also risky to place your fragile, defenseless child into insitutional care while she’s still in her reproductive years and you’re no longer able to care for her. Which would ultimately be the greater risk, the greater trauma–to HER?
What I can comment on is any effort by other parents to “push” specific healthcare “solutions” onto others. It’s one thing to describe or to tell the story; it’s another thing entirely to advocate or support a broader application of a tactic, especially one that is controversial.
Another thing I can speak to with real confidence: There is no such thing as “no side effects” when it comes to steroid hormones.
passionlessDrone
Mar 14, 2008 at 4:09 pm
Hello friends -
I’m outraged and sickened, but estrogen treatments and the other ‘treatments’ described here have nothing to do with it. If I read the text correctly, this is a person that is wholly dependent on a feeding tube; and has been her entire life. I cannot envision a larger, more grotesque distortion of the hand of nature. The idea that keeping someone alive via feeding tube is natural, but estrogen therapy is unnatural strikes me as the height of cognitive dissonance.
Just because we can do something, doesn’t mean we should.
This is a very sad situation for everyone.
- pD
Sarah
Mar 14, 2008 at 4:25 pm
I absolutely don’t believe that these radical measures were necessary. I understand that some of these problems may have needed to be addressed at a later date, but this wasn’t the only way to do it. We don’t even know for sure that menstruation would have been a major issue, and if it were that can be easily controlled with birth control pills. Easily. I hardly see why it was absolutely necessary to rip out her entire uterus. Last I checked, having a hysterectomy wasn’t a cakewalk, and it has permanent effects on the body. The uterus does much more than simply hold a fetus. I’m not sure I would support sterilization, but if they were going to do it surely it would have been far less radical to do a tubal litigation. Many of the other “problems” also had other solutions. Physically disabled bloggers have discussed various methods of home-care (including technological assistance) which allow wheelchair-bound people to live at home.
I sympathize for the parents, but I wish they might have considered advocating for more supports to help their daughter live at home. True, there are problems with caring for a disabled person in our society. But I can’t approve of them deciding to change the person in a radical and unnatural way–rather than trying to change society instead.
Kristina Chew, PhD
Mar 14, 2008 at 6:26 pm
It is very complicated, that’s clear.
One question I do have is the decision of Ashley’s parents to publicize the “treatment” (keeping in mind their own stated reasons, that they did so in order to make this “treatment” better known, for other families). Their statements on their website and in the interview indicate that they are very aware of the criticism that has been directed towards them. Certainly if one chooses such an “extreme” treatment and the makes it public, one is putting oneself into the public cynosure and praise and critique are alike inevitable.
Following up on Regan’s point about issues of “quality of life” and elderly relatives: From living with two disabled (physically and mentally) and elderly in-laws last year, I have wondered a lot about what is really the best and how what seems the best—living in one’s own home—may not be. My in-laws live a completely isolated life in their own house and this has been very detrimental for my MIL. She was in various hospitals and rehab centers for several months two years ago and she seemed happiest, most animated and alert, when living in an assisted living facility, with other women who were her contemporaries and events like Trivia Night, Movie Night, and so forth to go. Now she and my FIL pretty much sit at home and, without going into the details I witnessed when we lived with them, it was a very limited existence.
But that’s my opinion, I realize—–
Marcie
Mar 14, 2008 at 7:11 pm
>>The idea that keeping someone alive via feeding tube is natural, but estrogen therapy is unnatural strikes me as the height of cognitive dissonance.>>
It is not a question of it being natural or unnatural. No one said that. Hormones have effects on how a person thinks - and being subject to large dosages can have some extremely unpleasant effects on how a person thinks.
Marcie
Mar 14, 2008 at 8:02 pm
Addendum (before someone fusses at me): I was speaking only about the idea that there were no side effects to the hormones, not the debate in general.
Regan
Mar 14, 2008 at 8:41 pm
Sidebar.
Kristina,
My mother lived in assisted community care, enjoyed the company and activities and had a good quality of life, but she didn’t have Alzheimer’s. She had bipolar and died suddenly of a stroke.
My father, who wanted to stay in his home, had a rough time very near the end of his life but would not be budged–assisted care might have been more comfortable, but he also was competent, had a long-standing circle of friends and that was his preferred choice. He also did not have Alzheimer’s.
The in-law that I referred to did have Alzheimer’s. It was a whole different ball game than with my parents. The cognition is not coming back at late-stage. The opinion of the presiding physician was that keeping her at home with family and familiar surroundings was helpful and we did our best to keep her stimulated and maintain function as long as we could (interestingly involving many of the strategies that we used with Eleanor for communication, schedule, choice-making, recall, etc. )
But the last year really centered on basic survival care: turning, washing, toileting, feeding and all the rest of it. My sister-in-law and her family, who carried the vast majority of the demand and insisted that they were happy to do so and wanted to, were nonetheless exhausted after a year and I am not sure that they have completely recovered yet.
I believe that it’s really hard to walk in another’s shoes on these very individualized situations. I have no idea what I will think I want or where I will be in 25 years (knock on wood).
Club 166
Mar 15, 2008 at 7:59 pm
“The Ashley Treatment” is certainly less expensive in the long run than adequate support at home (or adequate support in an institution).
If Ashley’s parents are successful in getting other parents/society to accept this treatment, then government and insurance companies will push people to have it done for their relatives.
Joe
Kristina Chew, PhD
Mar 15, 2008 at 9:20 pm
I see what you mean (unfortunately).
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