Autonomy and the Ashley treatment

I hesitate to write this post, because I know it will offend some people I care about and appreciate deeply: disability advocates. They are fighting the good fight for respect for my son. I agree with so much of what they do.

But I disagree with some of them when it comes to the Ashley treatment. Or at least, their line of reasoning, if not their conclusion. The Ashley treatment is recently  back in the news because it is apparently on the upswing. The Ashley treatment is named after a girl with profound developmental disabilities. She cannot walk or talk and has the developmental age of an infant. Her parents requested, and received, medical treatment involving hormones to retard her growth, removal of her breast buds, and a hysterectomy. It makes her care much easier at home.

As a caregiver to someone with severe developmental disabilities, I will say this issue is no small potatoes. I have a non-ambulatory two-and-a-half year old who is pretty big for his age, and we are already facing difficulties. He has the gross motor skills of a six-month-old. His grandparents can’t babysit for more than a couple of hours because they can’t get him up and down the stairs. Bringing him to visit someone else’s house is a logistical nightmare. He can’t sit for more than a few minutes on the floor or in a regular chair. Since his cognition is more advanced than his gross motor skills, he wants to explore everything, and ends up scooching all over the floor, grabbing stuff. Like power cords. Trying to remove a wet, heavy, hypotonic child from a bath is nothing to sneeze at, either. It is literally a daily worry about what our future will look like if we can’t get him walking and he ends up five times his current weight.

My kid is cognitively ahead of Ashley, and can already make transitions (standing with help to get out of a wheelchair to a bed). So it’s not the same situation. I’m still pretty sure we wouldn’t do it if we did have the exact same situation. Not, however, for the reasons cited by some disability advocates.

“This is a violation of the civil rights of individuals, and it should be prohibited,” Decker said. “Parents have rationalised that this is an OK thing to do, but it treats people as though they have no worth and that’s a slippery slope that could end with the idea that people with disabilities don’t have to be kept alive or integrated in society.”

Silvia Yee, a lawyer with the Disability Rights Education & Defense Fund that is run jointly by disabled people themselves and parents of children with disabilities, said: “This is what we were fearing. It is becoming just one more choice on the menu of possibilities – a medical operation that will change a person’s life. Who has the right to decide to change an individual into a different entity?”

This sounds to me like they are opposed to to the Ashley treatment because it fails to respect autonomy. Here are more explicit versions.

Autonomy is granted out of respect for each person’s rational processes. But if you don’t have rational processes, autonomy can’t be the basis for your medical decisions. There is no way to give informed consent.

I violate the autonomy of my typical healthy children on a daily basis. I decide whether they are circumcised, what they eat, what their education will be like, whether they  receive vaccines, what medicines they take, whether they get braces, whether they can leave the house and when and with who. These are totally inappropriate decisions to make for an autonomous person. Because their rational capabilities are not developed, we don’t grant them autonomy in medical (or other) decisions. Of course, as they get older, we grant them more and more autonomy. And for developmentally disabled people with less intensive needs, they should also be granted as much autonomy (in everything!) as possible.

What the disability advocates quoted above seem to object to is that medical decision-making is done by someone other than the patient. Yee claims that caregivers don’t have the right to choose a medical operation that will change someone’s life. We have had to make several decisions about medical operations that changed my disabled child’s life. We will always be making those decisions for him. My son did not consent to getting a feeding tube; we did. We had to make the decision for several other surgeries. I honestly don’t even know what she means by changing the child into a different entity (that’s an odd, unfamiliar version of personal identity). I can’t imagine disability advocates saying we couldn’t get him a feeding tube.

My guess is that their objection is that such surgery is more in the caregiver’s interest than the patient’s. Some of these people seriously lack sympathy for caregivers. Decker says they are treating children as if they have no worth, and here‘s another:

I have found out that since the crass and self-serving advertisement of the “treatment” by a certain little girl’s parents, and in spite of the fact that the hysterectomy performed on that little girl was deemed illegal (too little, too late), many doctors are now “quietly” performing this “treatment” at the request of parents.

Jesus. These caregivers are trying to manage their own lives, and often the lives of siblings of the disabled. They’ve already given up a lot. Even if you disagree with them, can you express your disagreement with a little more sympathy? I’m not so sure it’s totally wrong not to take the caregiver’s interests into account at all when making medical decisions. Caregivers have interests, too. Many autonomous people make medical decisions that are solely in their own best interest. But many others take the interests of their family members into account. There’s no saying what a disabled person would do. But not doing anything is also a form of decision. Also, if it actually makes the difference between being cared for at home and being institutionalized, then the Ashley treatment might well be in a disabled person’s interests.

So how can we decide what makes the Ashley treatment wrong? Where it seems wrong to me is not a violation of autonomy, but of dignity. It seems disrespectful of her and of the woman she is becoming. But I could see another family coming to a different conclusion based on their own situation. I’m not so sure that I’m right that I would try to talk anyone out of it.

In any case, when talking about the profoundly disabled and ethics, we need to come up with a way to address our responsibilities to them without using autonomy, and without going back to the bad old days of not taking their interests into account at all.



Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.


  1. This is an outstanding post. I read about it a while back and (not even having the exposure to the issue that you do) I had a lot of mixed and conflicting feelings about. I guess I am a lot more comfortable with “mixed and conflicted” than a lot of people, who need to turn this into good guys and bad guys.

    Your delineation between autonomy and dignity is one to really chew on.

  2. Superb writing, clearly the product of hard-wrung and painful conclusions.

    If you could make any substantive reforms to the existing system, which issues would you address? It seems to me the only people who can help us better define the problem are the caregivers themselves.

    • Quality and amount of care given is remarkably uneven across the country.

      In my fevered dreams, I imagine that home alterations, plenty of respite care, nursing care, and continued therapies are widely available to everyone. I dream that necessary or even simply beneficial medical equipment is available to anyone. I also dream, for those who feel they cannot continue care at home, that there are excellent quality small group home situations staffed by loving, devoted people with tons of family involvement.

  3. I have an adolescent female patient who has moderate cognitive delays. She can walk and speak short sentences to convey simple thoughts. But she is incapable of taking care of herself, and will never live independently. Not so long ago, I was approached by her mother about starting her on hormonal treatments to stop her from having menstrual periods. The patient was incapable of understanding what was happening to her when she got her period, and found it very distressing. There were also significant hygiene issues. I agreed to the request without hesitation.

    Now, obviously this treatment is not nearly as radical as the Ashley treatments are. The effects of the hormone treatments will wane if they are stopped, and administering them is simple and non-invasive, unlike the surgical procedures involved with the Ashley treatments. But really, the difference is of degree, rather than category. And obviously I considered the quality of life of both the mother and the patient to be much weightier considerations than those of the patient’s autonomy.

    I have a question — to what degree do arguments about respect for persons overlap with arguments about their autonomy? To my reading, the Decker quote is heavy on the former but does not directly reference the latter. Can one argue the one without reference to the other? (I’m sincerely asking — this is not a rhetorical question.)

    That said, and as I’ve alluded, in my medical ethics classes I remember being taught that there were various factors that must be considered when making ethical decisions. One was autonomy, and to be sure it was not a consideration to be taken lightly. But quality of life was also to be considered, and it seems to me that the opposition to the Ashley treatments does not give due attention to it.

    Unlike your superb post.

    • There’s a real debate about how much rational processes count for personhood. You can certainly count moral personhood without rational processes (such as people who consider sentience to be a sufficient condition).

      Perhaps he isn’t using autonomy. But I think on other rationales it’s not so cut and dried that giving her the operation automatically means treating her like she has no worth.

      BTW, from message board posts, I would guess about half the girls with my kid’s syndrome get put on hormonal treatments to stop their periods.

  4. I agree with Rose that this is primarily a question of dignity rather than autonomy. The parents of disabled children make medical decisions on their behalf all the time.

    If there were a hypothetical “growth hormone antagonist” drug that would simply stop Ashley from getting taller and heavier, without otherwise interfering with her development, I would want parents to have that option.

    However, I’m troubled by what appears to be an attempt to make Ashley into a permanent prepubescent child. The ovariectomy was supposed to stunt her growth. But her doctors preemptively removed her uterus and her breast buds as well. I’m not convinced that this rather extreme set of procedures is justified by a sober cost/benefit analysis.

    I see good arguments for limiting a profoundly disabled child’s size, if that will give her a better quality of life. That said, I’m am dubious about whether the benefits of shorter stature are fully offset by the risks and side effects of a bilateral ovariectomy at a very early age. Will Ashley need hormone replacement therapy for the next several decades? Will she have brittle bones when she’s 30?

    The decision to remove her uterus and breast buds strikes me as extremely dubious. There are much less invasive ways of stopping menstruation. Ashley’s breast buds were ostensibly removed because Ashley might have developed large breasts, which might have been uncomfortable for her. That kind of speculative rationale seems unconvincing. Before extirpating healthy breast tissue, why not wait and see how Ashley developed? She might have been destined to be a relatively flat-chested woman from a busty family. Maybe her breasts would have turned out to be a non-issue for her comfort, but we’ll never know.

    Ashley was showing signs of precocious puberty, which was probably linked to her brain disorder. Precocious puberty is troubling for any parent. I can only imagine how dissonant it would be for parents who romanticize their children’s utter dependence. Ashley’s parents had nicknamed her “pillow angel” and cultivated the image of her as a permanent infant, as opposed to a girl, or a future woman. It seemed like this suite of surgeries was more about allaying Ashley’s parents anxieties about her developing body than about enhancing Ashley’s quality of life.

    • Two things that bother me about the parents: the “pillow angel” thing, and the parents in the article (not just Ashley’s) all claim they are motivated entirely in their child’s interest. Clearly it’s not all in their child’s interests, but I’m not so sure that’s wrong.

      I don’t know enough about medicine to comment as to the specifics. Or what Ashley’s doctors told the parents was necessary. Obviously, autonomy would still rule out the less invasive techniques. Might be okay on dignity. I think n matter what the least drastic way to get to the desired goal (in this, as in all medical decisions we need to make for our children).

      As an aside, I think it’s a problem on the part of parents of severely disabled kids to romanticize the situation. Many parents talk about angels, or say that their kids are really the ones who know the most or something like that. I know it’s a way of coping, but I worry it’s not ultimately healthy.

      • Thanks, Rose.

        I think it’s okay for parents to take their own convenience into account when making decisions for their severely disabled children. In many cases, making the caregiver’s life easier probably benefits the child as well. If it’s easier to move the kid around, the kid will probably get to see and do more things. I’m sure Ashley would rather spend time cuddling or playing with her parents than waiting around for them to use a mechanical lift.

        I worry about Ashley’s procedures because it seems like neither Ashley nor her parents benefit from radically reshaping Ashley’s body to further an illusion. She’s not a permanent infant, she’s a young woman with a severe disability. I sympathize with parents who find solace in the fact that their child will always need them in ways that an able-bodied child will rapidly outgrow. But I think it’s important to separate the satisfaction of being needed from the fantasy of caring for a perma-baby.

  5. I don’t feel qualified to comment on the specifics of the case. I thought the breast justification was the breasts might be cumbersome, but I have no idea if that was a warranted fear in this case. To the degree that the treatment was done to facilitate her care is one thing. I might not do it, I might think it violates her dignity, but it’s understandable and arguable. To the degree that it was done to facilitate some fantasy they had about their child is another.

    From what I got from the article, most of the parents who are now asking for it are more interested in ease of care, but I could be wrong.

    Actually, maybe I’ll address in a future post caregivers giving procedures done for aesthetic benefits. I do think those are permissible. It’s worth teasing out the moral differences between braces and ear pinnings on one hand and breast removal to maintain a childish illusion ends.

  6. Okay, so lets be a bit of a dick and consider some circumstances where even severely retarded people can be considered to have autonomy and to be able to make their own decisions: it’s about sex. What do you do with a severely retarded boy who is constantly trying to initiate sex?

    • Educate him about safe sex and the physical and emotional consequences around sex (this can take a great deal of creativity). Support him to make wise decisions and to find a sexual partner. These things not easy (I know because I do it every day), but it is necessary if people are truly living their own lives.

      Things you do not do include; punish him for behaving in a way you do not think is appropriate, discourage him from fulfilling his sexual needs and desires, medicate him for the caregiver’s convenience and/or tell him what he is doing is wrong (unless of course he is breaking the law or violating another human’s rights).

      • it is quite possible that his sexual needs/desires do not include safe sex (or partnership, for that matter).
        and, as I say quite often, there are many lines between “consensual sex” and “rape”.

        • Are we discussing a case study? I have supported many people who experience cognitive delays and have successful sexual relationships and/or long term romantic relationships. Some people even get married!

          Although I have never directly supported an IDSO (intellectually disabled sex offender), I have colleagues who have. You are correct, there are many lines between consensual sex and rape and those lines become increasingly difficult to manage when a person experiences intellectual/developmental disabilities. I would argue though that the severity of their “retardation” (as you put it) does not reflect whether or not they engage in sex consensually or by force/manipulation/coercion.

          • sorry, my vocabulary is quite lacking. it’s kinda hard to explain the difference between “no, he tests as an idiot on the IQ test, but is getting a BS in physics” from someone who is never going to finish elementary school, nor really know how to read.

            not a case study that I’ve much personal experience with.

      • I have no plans to deprive my son of whatever sex life he can enjoy.

        I have no idea what his receptive language skills will be, and am by no means certain that we will have independent toileting and toothbrushing down, much less safe sex. I hope I have someone like you around to help!

        What I worr about is violation of someone else’s rights. Adults with his syndrome do a lot of hugging and kissing of strangers, which is a major issue for caregivers. My kid is particularly huggy and kissy.

        I worry not because I think there’s nothing that can be done, but that it will be really really difficult.

        • “What I worr about is violation of someone else’s rights. Adults with his syndrome do a lot of hugging and kissing of strangers, which is a major issue for caregivers. My kid is particularly huggy and kissy.”

          Yes! I support numerous people who are huggy and kissy. It can be a life long support to help someone understand personal space and boundaries. When I support someone with this personality type out in public, I use it as an opportunity to educate community members as well as the individual. I tell the stranger that if they do not want to be hugged and kissed by this stranger they should tell them so. Please be kind, but speak your mind. I am not there to shield the individual from real life. The stranger should tell them that they do not appreciate their behavior and not to do it again. Natural consequences can be painful, but are frequently the best teacher.

    • Speaking of sexuality and gender… According to media reports, a growing number of parents of severely disabled girls are interested in ovariectomies and other Ashley-type procedures for their daughters. Is there any comparable move afoot amongst the parents of boys with equally profound disabilities?

      Removing a girl’s ovaries is akin to removing a boy’s testes. Just as a thought experiment: How many parents would be willing have their sons castrated in anything less than a dire medical emergency?

      • Whelp, there’s a difference of kind as well as degree, there.

        Ovariectomies prevent the parents from suddenly dealing with a pregnant, mentally/developmentally-disabled dependent.

        If you don’t sterilize your developmentally-disabled male child, you may have a paternity suit on your hands at some point, but that’s a different burden from a baby.

        I can see people weighing those differently just on potential outcomes.

        • I’m not sure I’m with you, Patrick. Once the baby has been brought to term (and paternity is determined) how is having a disabled daughter with a child different from having a disabled son with a child? Of course the mother will have to be supported to bring the child to term (just as any other woman would, barring any medical conditions that may or may not be related to her disability) whereas the father would not, but after that they are both parents. And they should both remain parents unless they choose otherwise or are deemed unfit to be the child’s legal guardians by a court.

          • It has certainly come to pass that not every child can readily have his or her patrimony established.

            Aside from just having a skeevy guy take advantage of your daughter and take off, there’s the practical difference in that a rape victim, when female, can become pregnant and a male victim cannot.

            I’m not saying that one should weigh their autonomy differently, but not everyone is going to put autonomy in front of utility and a pregnancy can (in many cases) be quantifiably and qualitatively different for women than men. I’m not saying that’s the way things ought to be, mind you, just saying that’s the way they are.

          • I understand this is not what Patrick is saying but it reminds me of something other people say (frequently parents of female people with disabilities), “at least if she is sterilized she can’t get pregnant if something does happen.” This sounds bad. It almost sounds like a license for the girl to get raped. I’m sure it is not, but that is the way it sounds.

            Also, taking away a person’s reproductive rights just so they don’t get accidentally pregnant (by rape or otherwise) is not a good reason to take away their right (in my opinion). What if they decide they want to have children some day. What if they would chose to carry their child to term if they did get raped, and put the child up for adoption. It is their choice.

            I also understand that the people who usually “benefit” from the Ashley treatment are not likely to have a typical romantic relationship and/or chose to bring a child into the world. *But* the idea of taking away their ability to do so, even if they are not likely to use that ability, just so they can be kept small does not sit well with me. Adults with I/DD struggle daily to have people treat them like adults (let them make informed choices, do not prevent them from making a choice you feel is “wrong”, let them spend *their* money the way they see most meaningful [without blatant exploitation]). I fear that keeping their bodies child-like will only perpetuate the problem.

        • Patrick, if your goal was surgical sterilization, you would do a tubal ligation or a vasectomy. Removing a person’s gonads is a much more radical intervention. Those glands secrete hormones that influence countless physiological processes from bone mass to brain development. (Sterilizing disabled children is a fraught ethical issue in its own right. In Ashley’s case, it turned out to be illegal.)

          • I’m curious about all of the details surrounding how Ashley’s guardian’s were successful at getting the procedures done. I support a woman with Down Syndrome and her guardian who are perusing tubal ligation and they are required to go to court and request permission for the procedure. I understand why the laws around sterilization and people with disabilities are the way they are, but it seems like a pain in the bum for these two people I support. The woman is clearly choosing sterilization for herself because she is sexually active and this is her preferred method of birth control. Perhaps this process if unique to my state. I must admit I am not familiar with the details of providing support to someone with a disability outside of Oregon.

            An opportunity for research! Fun!

          • > If your goal was surgical sterilization, you would do a tubal
            > ligation or a vasectomy.

            Oh, yes, granted. Full disclosure: I’m not aware of all the outcomes that are involved here.

            It’s obvious that the parents are making the call not just to prevent pregnancy but for ancillary reasons as well. Your thought experiment is valid, for people judging on autonomy -> people may indeed have a gender bias towards counting balls as a necessary part of a man without the associated beliefs about a woman, and that’s inconsistent.

            I was just pointing out that for people making that call based on outcomes rather than autonomy, they’re not going to regard them as necessarily the same, that’s all; and this doesn’t necessarily imply that they regard a woman’s autonomy as less important than a man’s, just that they regard both as less important than the sum outcome. It totally might, but that doesn’t mean that it necessarily does.

            Am I making sense? I’m tired – I might not be…

          • “I was just pointing out that for people making that call based on outcomes rather than autonomy, they’re not going to regard them as necessarily the same, that’s all; and this doesn’t necessarily imply that they regard a woman’s autonomy as less important than a man’s, just that they regard both as less important than the sum outcome. It totally might, but that doesn’t mean that it necessarily does.”

            Patrick, I see where you are going with this. I just don’t like it. I can’t tell if you are a person who hold’s this opinion or you are just pointing out that other people may.

          • > Patrick, I see where you are going with this. I just don’t
            > like it. I can’t tell if you are a person who hold’s this
            > opinion or you are just pointing out that other people
            > may.

            Whelp, I’m of two minds.

            It’s clear to me that autonomy, sense of self, sense of community, and sapience are all related, but slightly different animals. A dog has a sense of self and a sense of community, but he’s not sapient and thus can’t be considered fully autonomous. A mentally braindead person who had their head caved in during an auto accident has none of the last three, but may have already made an assessment for what to do in such a case, and thus may have a preexisting claim on autonomy (DNR). Then again, they may not. If they haven’t, it’s not clear to me that it is a violation of justice for someone else of sufficient standing to make a decision for them acting as their best intentioned agent (granted, there are scads of issues in this problem space, not the least of which is “sufficient standing” and “best intentioned agent”). I can see how people can come down on all sorts of completely justifiable stances in there.

            My wife has stated a verbal DNR, as have I. Neither of us have taken the time to finalize the paperwork, which is something we seriously deserve a boot to the behind for failing to finish following through… but if it came down to a case where I had to tell the doctor to disconnect life support I would feel ethically obligated to do so, even if I felt moral opprobrium and had the legal out that she hadn’t signed the paperwork yet. It’s what she wants. I have to respect her autonomy as an adult person of sound mind. Taking advantage of her incapacity to usurp her decision-making would be a gross injustice.

            It’s clear to me that we can’t expect true autonomy from someone who is not equipped to make informed decisions, so I have a hard time saying that we must grant them the same status as someone who is equipped to make informed decisions. On the other hand, this doesn’t get me much of anywhere because I can’t make a declarative judgment as to what level of recognition we ought to grant them due to their limited autonomy, either. I know that they aren’t the same as a fully actualized human being. But I don’t know anything for certain about what that should mean for my ethical obligations to them, or to their moral standing. I am greatly sympathetic to “assume full moral standing because you don’t have a clear reason not to do so”, but that’s essentially an axiomatic statement; you either grant that or you don’t.

            I look at someone who will never advance past the cognitive level of a two-year old and I can reasonably say that they aren’t the same as someone who has the cognitive level of a thirty year old. I would not expect a two year old, for example, to respond rationally to having a menstrual period, to use an example that has already come up on this thread. I don’t expect a twelve year old to face the same criminal penalty for a violent crime as a thirty year old (all other developmental things being equal) for similar reasons.

            That does not, however, grant me clarity as to what (if anything) I ought to do about such a case, should it be presented to me. I am informed enough by my stance on end-of-life decisions to recognize that there is a conflict there, though.

            There are certain situations my daughter might find herself in (I prefer not to reflect on too heavily) where I can imagine I will have to make some sort of judgment call based upon my best guess as to the value to her, lacking complete information as to her own judgment and (in some possible scenarios) having to choose between some pretty horrible options. In these cases of utter horror and despair, all I can say is that I know my daughter better than most other people, so the decision of what to do must unfortunately fall upon my shoulders, and I’m not personally comfortable with making my assessment generalizable, because I don’t know anybody’s daughter like I know mine.

            There are lots of cases where I look at decisions other people have made and say, “I would not do that, were I put in their circumstance”, but that doesn’t mean that I can comfortably say that they are wrong.

            Let’s take the Terri Schiavo case, for example. Let’s say my wife is in a coma, and the doctors tell me that she’s braindead, and I am thus obligated (under the previously mentioned verbal agreement) to seek to end her life support. Let’s say her parents disagree with the medical community, and offer to pay to keep her on life support. One might say, “Well, she’s braindead and thus it does her no harm to allow her parents to keep her empty shell around, and it may do them good, so I have an obligation to the living that outweighs my obligation to the – in my own opinion – dead.” I can see that. I can also see, “No, this was her decision, and it would be disrespectful of her autonomy to not pursue her final wishes, even if it means causing pain to her parents, and making me look like an insurance-grubbing tool to the general public” as an outcome. Either of those are ones that anyone might take (or, of course, they might actually *be* that insurance-grubbing tool, but I think everyone can agree that guy’s an unmentionable if that’s the case, so skip that for now).

            What would I do? I have to say this, I really don’t know, although I would be hard pressed to *not* follow her final wishes. If I thought cutting her life support might cause her mother to die of grief, that might weigh in my calculus, because I would assume that this is current information that my wife might actually take into account if she were still alive. Such is the quandary of assuming the burden of guarding another person’s self, you can’t know *for certain* what they would do in many cases, because people don’t generally suss out all the possibilities for terrible things before they occur.

            All you can do is your best, I suppose. I generally assume that when it comes to terrible outcomes, people try to do their best.

      • You know what’s weird? On the message boards, parents of girls talk a lot about the problems of adolescence. Dead silence from the parents of boys. On any of the issues. I wonder what that’s about. Maybe I’ll post something and ask about it.

        And clearly, if hormones will do the menstrual trick, I see no reason why there should be an ovariectomy. I don’t know what the decision-making was in this process, but a more drastic treatment is always unwarranted if a less drastic treatment can fulfill the same function. I have no idea why doctors went along with this. If there was a medical reason, fine. If not…WTF?

        • Your last two sentences about sum it up for me. True poetry 😉 lol

      • In my syndrome community (profound to moderate I/DD, pretty much never mild), I have heard zero about ovariectomies. Some parents use hormone treatments, which repels some other parents. There is also debate in the community about behavior-altering drugs.

  7. Thank you for another wonderful post Rose. I had to give myself a day between reading and commenting because I was so furious. I can not support any alterations to a person’s body without their understanding of the consequences or their consent unless medically necessary for survival. I deeply appreciate the comments regarding quality of life for the person with the disability. Of course I want to support the person to live comfortably and with as little restriction in their life as possible, but I’m not sure limiting that individual’s growth without them understanding is ethical.

    I have an immense appreciation for wanting to make the caregiver’s life easier. I know how tempting this is because I am a paid caregiver. I have never been an unpaid caregiver so I can not begin to pretend that I know what it is like to support someone 24/7 without monetary compensation. This post has caused me to reflect on a gentleman I support who is in his 50s and could benefit from hormone therapy due to a current medical condition. His legal health care representative (his mother) is refusing the treatment partially because she believes he will not understand what is happening with his body and partially because she does not want to complicate the lives of those who are paid to support him. My response to this is two fold (as was her decision). I believe she underestimates his ability to understand and it is unacceptable to chose caregiver convenience over his (possibly life sustaining) treatment.

    In the end, I come around to the same gut reaction I had as a strict disability advocate. You can not alter a person’s body without their consent unless absolutely necessary for survival. You are robbing them of something. In Ashley’s case you are robbing her of her entire womanhood and in the case of Dr. Saunders patient she is being robbed of an experience (admittedly not the most pleasant experience) of having her period. People who experience disability are notoriously underestimated for their capacity to understand and cope with life’s not so pleasant experiences, but I would never shield them from those.

    • …in the case of Dr. Saunders patient she is being robbed of an experience (admittedly not the most pleasant experience) of having her period.

      In what sense is she being robbed? The patient has had the experience of having her period, and the experience was overwhelming negative for her and for everyone who cares for her. There was nothing salubrious or ennobling about it. It was merely awful. To what purpose would forcing her to have the experience over and over be directed? Why should she go through something traumatic and impossible for her to understand, when I treat innumerable other adolescent girls for far less bothersome menstrual complaints? I do not follow your reasoning.

      • My goal was not to offend you Dr. Saunders. I used the word robbed because that is the language I use when something is taken from someone without their consent/permission. She did not make the choice, you and her guardian did. I do not question the experience was overwhelming negative (mostly because I never met the young woman and therefore am inclined to take you at your word). It is an ugly but a very real predicament when a parent (or any legal representative) of a person with a disability and a physician are forced to make decisions on behalf of the individual. I am intimately familiar with the process. I think it is important to note what is happening to the individual without looking through rose colored glasses. I do not question your decision to treat your patient how you see appropriate; I do not advocate that she should be forced to have a horrible experience over and over. I’m just trying not to sugar coat the ugly situation.

        Does that make sense? I’m not known for conveying tone well when I write.

        • There’s nothing undignified about taking meds to avoid awful periods. Lots of cognitively intact women and girls make that choice every day; and I have no problem with a parent approving this kind of treatment on behalf of a disabled person or a minor.

          One of the most important functions of medicine is to relive suffering. It the patient is suffering because of her periods, and there’s nothing that can be done to help her manage them better, her doctor and caregivers are doing her a great service by making them go away. Unlike a hysterectomy, drug treatment is reversible. Should the patient improve, the drug can be stopped.

          It’s easy to see why stopping a young woman’s period could be in her best interest. It’s a lot more difficult to justify cutting out a healthy uterus because a woman might end up with menstrual problems in the future. We’d never accept that reasoning for a non-disabled girl, even if we knew she was sterile for some other reason and would never bear children. It’s just too drastic to cut out an organ because it might cause problems down the road, especially when there are much less invasive ways to manage future trouble if it arises.

          • I agree with everything you said. I do not take issue with a young woman seeking drugs to relive personal suffering. More power to her. The not-so-great part is that she is not making the decision herself and is forced to rely on others to represent her personal choices and what is important to her. I am ecstatic to hear that her parents and Dr. S went with the drugs instead of surgery.

            I’m just painfully aware of what a difficult situation it is to be in when you are making decisions for people and the risk involved. It is a gray area which is why I try to help people make as many decisions for themselves as humanly possible. I’m not saying what the doctor did was wrong. I am saying that when a person must make a decision on behalf of another person (based on their assumptions about what that individual wants) it is robbing the individual of making that choice. I am not accusing anyone of malicious intent. When it comes down to it, sometimes you have to make a choice on behalf of a person with a disability. It sucks, I’ve been there. You just hope you are making the decision that the person would chose for themselves.

          • I want to be clear that I was only people who cannot speak for themselves. Informed consent is not black and white. To the degree that informed concsent can be gotten, it should be.

          • The not-so-great part is that she is not making the decision herself and is forced to rely on others to represent her personal choices and what is important to her.

            Of course it would be much better if she were able to make her decisions herself! Not just her health-related decisions, but all of them. But those are not the circumstances of her life. It is unfortunate but unalterable that someone (in this case, her mother) has to help her with every choice she makes, from what she wears to where she goes to what she eats. Some of these decisions are such that she can express an opinion and make some of her own choices. But she will never be able to understand a risk-benefit ratio or why she bleeds from her private parts every month, so someone has to help her. She is not being deprived of making a decision for herself by her mother or me or anyone else. She is deprived of making that decision by her medical condition, which (if you will) robs her of the capacity to make any such decision. We who are involved in her care are simply doing the best for her that we can given the realities of her diminished capacity.

    • I’ve got to run tonight, but I will address this tomorrow. I’m sorry it made you furious – I care about the people (Edmund’s therapists, other parents, other advocates) who disagree with me.

    • Allow me to begin by stressing that I am talking about only people with the most intensive needs. To the degree that disabled people can give informed consent, they should! Autonomy can be done on a sliding scale.

      Alow me also to stress that I think the Ashley treatment is indeed wrong, but that it’s a matter of degrees. I don’t think stopping menstrual cycle is wrong.

      This is not only an issue that affects the disabled. Two other groups are affected: people who have lost rationality (say, someone who’s gotten in a car accident and lost consciousness but we don’t have consent to take them to the hospital to perform surgery, someone with Alzheimer’s), and children.

      In the case of someone with Alzheimer’s or the car accident victim, we hope they’ve left instructions. If they haven’t, we make a guess about what they would want. An EMT at a car accident scene goes ahead with major surgery.

      With children, we assume that they can’t give consent, but they can give more consent as they get older. I think it is the same thing with the disabled. I treat my infant not with autonomy (or we’d never cure any problem), but with dignity and respect.

      I am most certainly not talking about going back to the bad old days of sterilization or depriving the disabled of a sex life. I am certainly not saying that caregiver interests should trump the interest of the disabled. Indeed, I think it should be the other way around. I just think caregiver interest can play a part in a medical decision that involves the dignity of the person.

  8. Mary, I think the law in Washington State is similar to the law in Oregon in that you need a court order to sterilize a disabled person. Ashley’s doctors didn’t get one. The court order system makes some sense. We want sterilization to be an option for women like your friend’s daughter. She has her own excellent reasons for wanting the surgery, which should be respected. But because of her disability, she’s also vulnerable to all kinds of coercion and manipulation. History shows that people with disabilities have often been coerced into sterilization, or sterilized without their informed consent. If the court order system is working properly, it provides some compassionate oversight to make sure that the disabled woman’s wishes are being honored and that nobody is pressuring her or tricking her into this. It’s a bureaucratic hurdle, but it’s probably a good thing overall for disabled people in Oregon, assuming the courts are prepared to listen to disabled people. I’d hate to think of some judge deciding that your friend’s daughter doesn’t “deserve” a tubal ligation on the basis of outmoded ideas about sexuality and disability.

    • After scanning through a few documents, I agree, it does sound like Washington and Oregon have similar laws.
      I like you, Lindsay. Do you have a background in DD?

      • Nice to meet you, too, Mary. I don’t have a professional background in DD. But it’s something I think a lot about because of a family connection. My cousin Ray is an adult living semi-independently with autism, cognitive disabilities, and severe visual impairment. My mom does a lot of advocacy for him.

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