Do you ever read an argument written by someone you agree with, and find yourself saying, “please, please – get off my side!”
I’ve seen a few people commenting on Ashley’s case say “I’d rather be dead,” or saying that if they were in an accident that left them in a state similar to Ashley’s, they’d like to be allowed to die, or even that their living wills will call for them to be killed in that situation. And they’ve usually been people who, like me, are generally supportive of Ashley’s parents’ decision to give the “Ashley treatment” to Ashley.
There are several problems with this view, in my opinion.
First of all, it’s advocating murder, or at the least implying that someone else — Ashley — would be better dead. (Even if that’s not what folks mean, that’s what it implies.)
Ashley is not, from what her parents describe, miserable. She’s engaged with the environment around her, she enjoys watching TV and listening to music. She enjoys being with her family and being held. She’s a person, and saying that people like her shouldn’t live, or that if you were like her you wouldn’t want to live, is (imo) ablist. And it’s rude.
Second, it’s irrelevant. No one who’s capable of speaking or writing in a discussion about Ashley, is in Ashley’s position. The position of someone who was once capable of participating in internet discussions, but who then for whatever reason becomes cognitively disabled to an extent similar to Ashley, is still significantly different from Ashley’s position. Ashley is a person of her own; she doesn’t appear to regret being herself.
Since it’s not relevant, it’s best not to bring it up. And if someone asks “what if you were in an accident that left you in Ashley’s position” or something like that, it’s more logical to say “that’s not relevant” than to say “I’d want to be dead!”
Third, non-disabled people who say “I’d rather be dead” have mistaken assumptions of how people feel after they become disabled. Research has shown that people who lose the use of their limbs — even if they previously believed that they could never find life worth living as quadriplegic — are usually (after a period of adjustment) about as happy with their lives “after” as they were “before.” Being able to move unassisted is not, in practice, what makes life worth living.1 There’s no reason to think that someone with a mental state similar to Ashley’s couldn’t experience contentment, happiness, and a life that is worth living.
Finally, some people are likely to respond to this post by reminding me that I was in favor of letting the courts and Michael Schiavo decide that Terri Schiavo would die. I think Terri’s case is completely unlike Ashley’s; Ashley is conscious, has a central cortex, and is capable of experiencing the world around her. Terri could not have any experiences at all; her cortex, the area of her brain that thought and felt and experienced, was completely destroyed. Terri was profoundly dead in a way that Ashley is profoundly alive.
More importantly, Terri was at one time in her life capable of making her own decisions — and she decided to make Michael Schiavo her legal next of kin and decision-maker were she ever incapacitated (and vice versa). That decision is the only one we know for sure Terri made, and it should have been respected; just as if she had left a living will that said that if comatose she’d want to be kept alive as long as possible, that decision should have been respected. So in these two respects, the Terri Schiavo case and Ashley’s case are completely different.
Updated to add: This post is a response to stuff I’ve read all over the blogosphere, not just to what I’ve read in comments on “Alas.”
- This is what makes a movie like Clint Eastwood’s Million Dollar Baby so dangerous; it suggests that immediate suicide is the right response to becoming disabled. [↩]
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Thank you very much for posting this. Despite all the exhortations in the world that every American should have a living will, I’ve always had a big smidge of doubt in mind about the largely impossible question of whether what people put in their living wills is actually what they DO want in the unfortunate circumstance that the living will goes into effect unexpectedly (predictable causes like progressive cancer and very old age are different – I’m talking about Terri Schiavo moments and bad car accidents and the like). I’ve always harbored a sneaking suspicion 99% of us, when faced with the prospect of sitting in the hospital with tubes everywhere and diapers on and the rest of the like that we all like to profess such horror at, would still – in the face of nil chance of survival without profound congnitive and physical disability – chose to fight for life tooth and nail when the actual circumstance arises. It’s easy to claim “I’d just now to die” now, in the comfort of an abled body and intellectualized mind, but it’s a data set that no one can ever gather: Terri Schiavo professed to never want to live that way, but once she was there, did she really want to die? How well does one’s wishes from the perspective of an abled body predict the same individual’s wishes in the case of sudden and irreversible harm that precludes further communication on the topic? No way under the sun to answer that.
Thank you.
I’ve used these points (less well and less succinctly) to friends who have said similar things to me. I’m bookmarking this post…
btw, I’ve been gone from blog reading too long.. and now I know why I missed reading amptoons the last few months.. .this post and the transphobia posts are both excellent.
Re Point 3: This reminds me of various responses to people who say that they don’t want to have children. Specifically, “It’s different when they’re your own” or “You’ll change your mind.”
Even if those statements were 100% true, people still have the right to make personal decisions about their future based on the information and feelings they have now. (However imperfect that information may be.)
I agree that this is not akin to the Terri Schaivo case, but I obviously disagree with part of your point #3 because I did ask people what they would want in if they were in that position.
As I have stated previously, I think empathy is central to overcoming personal prejudice. I think you are overstating it when you are assuming that nothing can come from suggesting that people should try to imagine themselves in Ashley’s situation. The fact of the matter is most of us will have some sort of disability in our life times, and I think this scares people profoundly, which is why it is so hard to generate empathy in some people. I think the “I’d rather die comments emanate from this fear.”
I understand that no one really knows exactly what Ashley is thinking, but I don’t think it is unreasonable to try to imagine yourself in a situation where you are disabled and are not able to use traditional means of communication or other means of communication to explain your wants and desires to people.
” but I obviously disagree with part of your point #3 because I did ask people what they would want in if they were in that position.”
Which, by the way, is the only reason I said I’d like to be euthanized. More or less, I thought “what do you want?” was not a valid way to determine what should be done for someone else.
There are plenty of things I want or don’t want that I don’t feel should be legislated for others.
Outlier, while I think you are correct that people should be allowed (and are allowed) to make decisions (even that they may later regret) based on what they don’t know about the future, it stands as a fallacy of the whole end-of-life care scenario in cases like Schiavo’s that she got her wishes. Our best guess is that she maybe did (because she once said she would never want to live “like that”), but whether she actually did or not is unknowable. Humanity being humanity and not being particularly adept at seeing into the future, living wills and such that specify foregoing certain treatments are the best we got for people who are adamantly against them…still, the decision to be adamantly against something like a feeding tube or a breathing device fundamentally comes from a place of horror of living with one, which thousands of people across the country happily and successfully do all the time. I do wonder about the crossover is between “I wouldn’t want that treatment” and “no one deserves the time and energy to recieve that treatment, even if there is a living, sentient being inside of the body that needs it.” The former is fine, but the latter is what disability rights activitists complain quite rightfully about when, for example, a care taker wheeling them around decides to discuss how the person in the chair would be better off dead to another co-worker who happens to be standing in the elevator. It’s a fine line between “I wouldn’t want it” and “I’d euthanize anyone who needs it,” and people cross it all the time. Rhetorically and historically, at the least.
This nails what I’ve been bothered by, in the exchanges about what TABs think they want from the perspective of being, at this time, able to function independently of a particular intervention.
First, you don’t know what interventions will be appropriate for your own care unless you have a crystal ball in which you’ve seen the stroke/accident/anaphalxsis from spider bite/other instigator of your own body’s inevitable failure, and played it ahead to see the ultimate outcome.
More importantly, though, what does it matter what you think you’d want, to someone else’s situation? Yes, empathy is important, but some of what is expressed as putting oneself in someone else’s pressure socks is not coming from feeling their pain but instead being horrified by their helplessness.
Amp, well-stated as usual, particularly that third point. It’s sad and shocking how many survivors of stroke, accident etc. attempt suicide to try to avoid learning to live differently. My neighbor died last week, 52 years after a workplace accident that killed the other victims and might easily have killed him. Most people would say that they would rather die than live like he did, blinded and ‘disfigured’ (his word, I thought ‘burn scarred’ more descriptive). However, having observed his life for 6 years, I can no longer see it that way.
Thanks very much for posting this. I’m reasonably ambivalent about the “Ashley treatment,” but I’ve found a lot of the comments advocating it pretty horrifying.
I would add that as bad as the comparisons to Terri Schiavo (which seem, incidentally, to somewhat validate the concern about a slippery slope in that case) are the several comments I’ve seen explicitly comparing Ashley to a fetus, explicitly linking this case to the pro-choice stance on abortion, and in some cases explicitly suggesting that anyone opposed to the Ashley treatment (and I think implicitly suggesting that anyone opposed to allowing Ashley’s parents to kill her) was anti-choice when it comes to abortion. I have a really hard time responding to that argument rationally. Fetuses are non-people. They have no rights, including even the right not to be killed. It’s been a long time since I’ve heard anything as disturbing as the tendency of pro-life feminists to compare Ashley to a fetus.
Regarding the people who say they’d want to die if they were in Ashley’s position: Ashley doesn’t know what she’s missing. Those people on the Internets would know. It’s a different experience, period, on both sides.
Disclaimer: I’ve watched my father die excruciatingly slowly of an illness that’s left him with “locked-in” syndrome- he has no ability to communicate, he’s a vegetable in a bed, there is no way we can know how he felt about becoming more and more disabled to the point of becoming a “pillow angel.” Naturally, this influences my view on things.
“It’s easy to claim “I’d just now to die” now, in the comfort of an abled body and intellectualized mind, but it’s a data set that no one can ever gather: Terri Schiavo professed to never want to live that way, but once she was there, did she really want to die?”
But how the hell would you know if she changed her mind? There was NO way to know in her case. The opinion that someone stated on a legal document at the time when they could make the decision is all we will ever know. You’re saying we should discard that Just In Case she decided that the bedside life was worth living, but couldn’t tell anyone? Not everyone wants a living will saying to kill them in the event of. Two of my ex-boyfriends and my mother would both want to be strung out for as long as possible. Okay, fine, but if they change their minds, they may not be able to communicate that either.
I am not saying “if you get disabled in any way, kill yourself.” The various levels of disability out there are so unique and varied that you can’t do that. But in the case of an extreme situation, it isn’t just a case of “learn to live happily without your legs/sight/whatever.” There there is hope. If you’re severely disabled or will become severely disabled to the point of Terri Schaivo, it’s different.
There’s no way to know in my dad’s case if he changed his mind from the living will he signed in 1998. My mother, Madame Pro-Life who had his power of attorney, disregarded his wishes and insisted up until about…two days ago, that he wanted to live. Really, we have no idea what his wishes are now. You can ask him to blink for yes or no, but he can’t even manage that. (Though we could pretty well guess that he would have had an absolute screaming cow if he knew that we are now paying $48,000 to keep him alive for the month of January alone, regardless of whether or not he wanted to live.)
Bottom line is: whatever the person last stated, when they were able to decide for themselves, is the best we can do in the situation. Allowing for “maybe they changed their mind” if they are unable to communicate is disrespectful to the person’s wishes, unproveable, and puts the person in a situation they may not have wanted to be in, and sure as HELL cannot get out of. In the case of Ashley, we’ll never know at any point what she may or may not have wanted, and the best we can do is leave the decision to her parents and the enormous team of doctors they consulted with.
I think the most appropriate answer to “what would I want if I entered a state like Ashley’s” is “that wouldn’t be ME anymore.” The person who is ME wouldn’t exist anymore. So there is really no way to coherently ask “what if *I* entered Ashely’s state?” If my mind/brain were changed in that way then there would be no ME anymore, so the question is really “what would I want for the mind or person or being who would then be embodied in the body I used to be in”? But then the question is just, “what would you want for somebody else”–which is clearly an irrelevant question.
Also I don’t quite understand points 2 and 3. In point 2, you say that Ashely doesn’t seem to regret being herself. But isn’t it impossible for Ashley to have a cognition anywhere near as complex as something like regret? (I know very little of the medical issues of the case. I am just taking it at face value that she literally has a mental age of an 3 month old.)
Point 3 makes a good point about the disparity in able-bodied people’s attitudes toward becoming disabled and the attitudes of those who have actually become disabled. Able-bodied people seem to mistakenly think that if they became disabled they would be horribly distraught and could never adapt and would want to die. The implication seems to be that perhaps this is also true of entering a state like Ashley’s–one might think one would want to die, but what if one would want to live? But this parallel doesn’t hold because (and again, I am taking the 3 month mental age literally) someone in Ashley’s state cannot even conceptualize living or dying.
Though I didn’t answer the question in the earlier thread, I am one of those folks who does feel that I’d rather not exist than enter a state like Ashley’s. (This isn’t exactly right though, because, as I said earlier, I’m not sure the thought of ME being in a state like Ashley’s is actually coherent. But let’s pretend that coherence isn’t a problem.) This is not the same as saying I think Ashley would be better off dead. And it is not the same as saying that I think that if I entered a state like Ashley’s I should be euthanized. I think these claims are all quite distinct. For instance, suppose someone asks “what if tomorrow you became a cat–not just physically, but mentally”? Well first I think the same issue of that not being ME would apply. But aside from that, my answer would be, “I’d rather not exist than be a cat.” I am fully aware that many cats greatly enjoy their lives. In fact, I’d bet just about anything that my own cats get a higher ratio of pleasure to pain out of their lives than I do. And I certainly don’t advocate murdering cats or that their lives or worthless. But if, in that time when I was transforming into a cat, I could push a button which would make me no longer exist, I would definitely push it.
I think the reason is something that John Stuart Mill realized long ago–that all pleasures are not equal. Of course, for Mill the distinction is between high pleasures like art and philosophy versus low pleasures like orgasms and food. I don’t mean that elitist crap. I mean that the pleasures in life that I most value are things that generally require a somewhat high level of cognitive and emotional functioning–being able to have significant interpersonal relationships with other people; being able to feel emotions like love, awe, admiration, pride; being able to experience and enage with moral and artistic values; having free will (or at least, feeling as if I have free will); having significant self-consciousness and a sense of personal identity, etc. These are things that cats cannot do. If there were aliens who had certain mental abilities of humans–perhaps the ability to perform amazing feats of logic and mathematics and could have orgasms–but lacked most of the abilities mentioned above, I would rather not exist than be that kind of alien as well.
I was one of the people on the other thread on Alas about Ashely who brought up fetuses. I don’t know that you were really referring to me though given you mention the pro-life position in your comment (and I’m certainly not pro-life), but just in case I thought I’d respond.
I brought up fetuses because there was a question of whether mental capabilities could be relevant to moral status. I think the case of fetuses shows unequivocally that they are relevant. (Nothing clearly follows from this about Ashley however.)
Many people in the earlier thread seemed to assert unequivocally Ashley’s personhood, though (at least I assume) most of them would unequivocally deny the personhood of a fetus (at least an early term fetus). I think there are ways to understand personhood such that Ashley is clearly a person and fetuses are clearly not. I haven’t, though, seen anyone actually talk about the theory of personhood they are using regarding this case. On the other thread, in fact, a lot of people seemed to be talking about humanness as the basis for Ashley’s moral status (which I find really problematic because on any non question begging understanding of the term “human” fetuses are human too, not to mention the species human is just a biological category and I don’t see what can be morally relevant about that).
Perhaps it is just the philosopher in me who can’t help but feel there is something bordering on contradictory going on in the according of personhood in the different cases. (Perhaps I should add here that I think that most of the arguments against “the Ashley treatment” seem to hinge on rights of autonomy or dignity, and those rights seem to be dependent on personhood. But, I think one can certainly criticize “the Ashley treatment” on grounds which are agnostic as to whether Ashley is a person–for instance, the issue of causing her pain for the convenience of others. All that matters for that consideration to hold is that she be capable of feeling pain which I think clearly she is.)
I’ve always harbored a sneaking suspicion 99% of us, when faced with the prospect of sitting in the hospital with tubes everywhere and diapers on and the rest of the like that we all like to profess such horror at, would still – in the face of nil chance of survival without profound congnitive and physical disability – chose to fight for life tooth and nail when the actual circumstance arises.
What Skylanda suspects here seems to be a principle problem of nondisabled people’s pereptions of life with a disability. I’m not minimizing those drastic tubes-everywhere situations when I note that I firmly believe Skylanda is right. And to go further, just about a year ago I was in an ICU and in that uncertain situation of pain, discomfort, tubes everywhere, inmobility, inability to comunicate well, and limited prospects for recovery… and I wavered between wishing myself out of existence and feeling desperately the value of living.
Significantly, the sense that my life still had value often correlated to how I was being treated at the time — I felt the value and desire for my life most keenly when someone said a kind word, shared their thoughts, touched me reassuringly, you know, treated me as a worthy person. But I was in a state of shock and depression too, of course, and will be forever grateful that no one seriously offered me any alternative to keeping my life at that time. Any decision I might have made then or prior to learning about how to live with the level of disability I have now could so easily have been a tragedy.
Here’s where I run into a problem.
I have a living will, saying that if I were to enter a situation like Ashley’s, I ought to be taken off of life support.
I set up a living will because it’s the responsible thing to do and I feel that I have both a right and a responsibility to make these decisions for myself.
I would never say that everyone (or even anyone but me) in a situation like hers ought to be taken off of life support! No, no, no, no, no. This is my choice, that I make for me, not anyone else.
What’s more, I don’t make a point of bringing it up in these discussions. It’s not germane.
However, in a case like this, where we’re asked about our choices, specifically by Rachel . . . and we respond . . . suddenly we’re big ol’ abelist assholes who think disabled folks are subhuman and ought to be put to death and are controlled by our overwhelming fear of disability and . . . and . . . and . . .
See, I may have missed it, but I don’t think anyone was advocating that Ashley ought to be put to death. My decisions for myself are based on my quality of life considerations. The reason I think the decisions made for Ashley were reasonable ones is that they were based on her quality of life considerations. I don’t see any point in ending the life of someone who is still capable of happiness or pleasure, but I do support the right of each individual to choose, for themselves when that is.
Plus:
“What would you do in this situation if it were you?”
“I’d do X”
“BZZZT! Wrong answer!”
Seriously, if you don’t want to know what I’d do, don’t ask.
I didn’t mean to imply that you or anyone else was an asshole or that you think disabled folks are subhuman, etc.. Sorry if it seemed that’s what I was saying.
“See, I may have missed it, but I don’t think anyone was advocating that Ashley ought to be put to death.”
You should check out the thread at Pandagon. It’s revealing. And disturbing.
I totally see your point and as a society we have decided that yes, we can decide this for ourselves without full information, and for that we have living wills, POLST orders, powers of attorneys (although obviously there’s nothing fool-proof about that), and all that is on the side of anyone – able-bodied or not – who wants to make those decisions with todays information here and now.
But none of that stops the phenomenon of people taking their own opinions about it and projecting them onto already disabled people. You may not be doing it, and if not, great (sorry if you’re not going to be actively thanked by disabilities advocates for not wishing them dead, but ok). But other people are. I can’t remember if it was Blue Lily or one of the other disability bloggers (BL, please correct me if it wasn’t you) who recounted sitting in an elevator listening to her caretaker explain to another person in the elevator that they would prefer to be dead than in that state RIGHT IN FRONT OF HER FACE, but this shit happens all the time. That’s right, the person in charge of your safety thinks you’re better off dead. Chew on that one for a while…is it just rank insensitivity? A life-threatening moment? How do you know if you’re the person who can’t get up and walk away in disgust?
I wish there was a way that choices could be had on the individual level without that translating into a society-wide disdain (and, yes, neglect) for people who use feeding tubes and mobility aids and breathing assist devices and the like to get by every day. We have the choice bit – the living wills, the power of attorney, etc – it’s the other part we don’t have.
I don’t think anyone’s advocated it here, but it has been advocated in discussions of the “Ashley treatment” both on Majikthise and Pandagon. And, of course, the possibility is contained in activistgradgal’s suggestion that “mental capabilities could be relevant to moral status.” Activistgradgal has argued that Ashley could be declared a non-person whose moral status is equivalent to that of a fetus, an entity which people are permitted to kill for any reason. The threat of mass murder is absolutely contained in activistgradgal’s arguments.
I find the story about Ashley to be very disturbing, at least partly because I really can’t make up my mind about it, so I guess that means I would have some difficulty answering what people should do with me if I were ever through illness or misfortune to assume her state — and I guess my answer would revolve alot around what impact my state would have on those who love me the most, and how much pain I would be in. Which is why I think it’s very hard to analyze what Ashley’s parents are doing: To say that they are doing it for their own convenience vastly understates the degree of commitment and sacrifice they undertake on a daily basis to serve Ashley’s best interests. And, it seems to me, that the best way to view this surgery is as an accommodation to their hardship (real or perceived) in being able to continue making that sacrifice. Is it wrong to make Ashley sacrifice something in pain and bodily integrity given the parents’ willingness to continue their own sacrifices on her behalf? Convenience is not a concept that fits in this picture (as was argued in some of the comments on the other thread). If convenience were the issue, they would put Ashley in a nursing home and visit.
On the other hand, I reject totally the idea that this is necessary to avoid sexual abuse of Ashley — partly because it still leaves her vulnerable to other kinds of abuse, and because prepubescent children are also sexually abused.
Ahh, okay, that makes more sense then. I’ve just been reading the conversation here, so I thought that Amp’s post was primarily in response to that, and it seemed kind of over the top
In any case, I agree 100%. Actually advocating the death of another thinking, feeling person is flatly unacceptable and barbaric.
Ack. I just read my first comment over and caught a bad mistake. In this:
That pro-life should be *pro-choice.* I think it’s awfully self-serving for anti-abortion types to compare Ashley to a fetus, but I can be pretty certain that they’re not doing that to argue for Ashley’s extermination. Whereas when pro-choice people use that language, it carries with it the implicit argument that Ashley doesn’t even have the most basic rights, including the right not to be killed.
I haven’t tried to argue that Ashley should be declared a non-person. I’ve simply pointed out that I haven’t seen anyone put forth any coherent theory of personhood. All I’ve seen is many posters dismiss out of hand the idea that mental capacities could be relevant to personhood and assert unequivocally that Ashley is a person. But I haven’t seen anyone actually explain the standard of personhood they are employing. The only coherent theories of personhood which I can think of do say that mental capabilities are relevant to personhood. That is all I have tried to argue. (Note that one can accept this point and still think that Ashley and even fetuses are persons. One could say that the mental capacities required for personhood are the most rudimentary capacities we see in fetuses–ability to experience the environment, ability to feel pain, etc. Or one could point out that there are important mental capacities which Ashley has and fetuses don’t have, thus Ashley is a person and fetuses are not according to a mental capacity view of personhood. Of course, on this view most non-human mammals will likely be persons too.)
I have not made the further argument that Ashley is not a person, because I am somewhat torn on the issue. (Especially since I find even getting the medical facts of the case straight difficult. The doctors talk of the mental capacities of a 3 year old. But what does that mean? I’ve been taking it literally, but it seems many posters are not taking it literally–i.e. the original post in this thread makes reference to Ashley’s desires about living and dying and regrets about existing–clearly things that 3 month old can’t conceptualize.) Besides being unable to quite understand what “a mental age of 3 months” means, I’m torn because I’m not sure if 3 month old infants are persons. I’d like to know more about their mental abilities. From the little I do know, I would say they are somewhere within the grey area between clearly not a person and clearly a person. Since I think 3 month old infants are in the grey area because of their mental abilities, I think it can’t help but follow that there is a chance that Ashley is in the gray area too. Perhaps everyone else on this thread thinks it is unequivocally clear that a 3 month old infant is a person. I’d like to know, then, what theory of personhood one is using. Or perhaps everyone else thinks that Ashley is significantly different than a 3 month old in morally relevant ways. I’m open to this suggestion, but haven’t been able to work out what these ways are. Can anyone explain their thinking about this?
You say that my implication that Ashley (and presumably 3 month olds) may not fully be persons implies mass murder. I don’t think it follows at all from the fact that x is not a person that one can kill x for any reason, though you imply that I have said this. I am pro-choice and I do not believe that fetuses have a right to life, but I also do not believe that fetuses can be killed for any reason with no moral implications at all. Similarly, I don’t believe that my cats or a cow or a 2 day old infant has a right to life. But I surely don’t advocate killing any of them, and I think there can be serious moral wrongs in killing any of them. I just don’t think that those moral wrongs are violations of a right to life.
Now Sally could you explain your theory of personhood (which doesn’t appeal to mental capacities) which clearly demarcates Ashley and 3 month old infants as persons and a fetus as not a person? I’m open to new suggestions about the concept of personhood.
I’ve been scanning these posts and I’m stunned at how the discussion has been going. Unfortunately, I don’t have a lot of time at work to screw around (I’m on my lunch break right now) and I don’t have internet at home so I don’t have time to thoughtfully read and digest every single comment – so keep in mind I’m responding to a general feeling I get from reading all comments together not one comment or commentor in particular.
Rachel’s point about empathy is spot on, and I think there are a few problems with the way people have been interpreting her (both because of the way she worded herself, and people’s natural inclinations of putting themselves in another person’s shoes). The point of empathy in this case is not necessarily to directly think of yourself in Ashley’s shoes. You can’t. I can’t – it is an extreme case and it’s nearly impossible for anyone without severe disabilities to truly imagine themselves in that state. However, I think it is important to emphathize with the HUMANITY in Ashley. What I read as I was reading all those comments was a lot of people who could much more easily picture themselves in the shoes of the parents rather than with Ashley. I do not believe Ashley’s parents are cruel and hateful – I believe they love their daughter in the only way they know how and they made difficult decisions they truly thought were in her best interest. As a parent, I have no idea what I would do in their shoes, but I’m certain none of their decisions were easy. I think many of the commentors are placing themselves in the shoes of the parents in this case and thinking to themselves that what they did makes a damn good bit of sense from that perspective. There’s nothing wrong with feeling empathy for Ashley’s parents.
However, I saw an awful lot of dismissals of Ashley’s basic personhood. And when I say that feeling empathy for Ashley is important, that’s what I mean. I personally have a physical disability and have worked with adults with developmental disabillities – people with low cognitive and physical functioning who are difficult sometimes, and have survived horrors I can’t begin to imagine, but who are also joyful and lead meaningful and fulfilled lives. So I guess maybe it’s easier for me to see this whole thing from the perspective that Ashley is a human being and her body and life deserve to be treated with respect as such.
Amp is right when he says that those of you who say, “If I were in that state I would not want life support” are absolutely being ablist. It may be true that you feel that way, but it doesn’t make it any less ablist. Why is it ablist? Here’s the bottom line, by saying that an existence like Ashley’s is a fate worse than death you are implying that Ashley couldn’t possibly have a life worth living. Again, it’s perfectly fine that you feel that way about your own person – we all have the right to make such decisions about our own lives, having the right to feel that way doesn’t mean it’s not ablist at it’s root. I’m not saying it makes you an evil person who thinks that all disabled people should be euthanized, but it is a line of thought that is ablist at its core and it’s truly your choice to decide if you want to change that or not.
Slightly off topic, but let me give you a very concrete example. I have an inherited neuromuscular disease. It is a disease that affects the peripheral nervous system and attacks the nerves in my arms and legs. Over time, it causes muscle atrophy which has a variety of outcomes – I have foot deformity, muscle weakness, I can’t run or go up and down stairs well, as a result of the fatigue I experience from having other muscles work harder than they should have to compensate for the atrophied muscles, I have significantly less energy than most folks. This has a direct impact on my life and means I’m not really capable of doing the same level of everyday work that others can do – for example, I work full time, and have a toddler to care for. My husband works part time and goes to school full time. We are both very busy people, and it’s possible that if I did not have CMT I’d have more energy for helping to clean the house, cook meals that are more nutritious than Stouffers skillet meals, run errands etc. Instead, I live in a fairly messy house, I don’t have as much energy for meal preperation etc. This disease is progressive and there’s no way to determine how long I will be able to walk (I have already lost the ability to walk well unassisted, though the braces for my feet/legs work quite well for now). I may very well end up in a wheel chair. I do experience some level of chronic pain and fatigue. It’s not a fun disease, but it’s not all of who I am. In fact there are parts of this disease that I am grateful for – it changed my perspective and shaped who I am and since I’m a pretty good person, I’m pretty ok with that.
When my husband and I were dating, my mother in law was asking about the disease that I have and wanting to know about the inheritancce patterns, whether or not they could test for it in utero, etc. They can indeed test in utero and I could potentially choose to abort a fetus with this disease. She asked me if I would abort in such a case and I said absolutely not. To abort a child for that reason only is a bit like saying my life is not worth living, and I’m not really interested in that level of self hatred. She responded by saying that she thought we should probably abort – at the time we were talking about imaginary fetuses, and it’s possible she would have felt differently had I actually been pregnant, but I doubt it. She meant absolutely no harm by it – her perspective was that you should want the very best for your child and that wouldn’t you want to prevent your child from having to deal with the difficulties you faced – life is hard enough as it is. While I sort of understand that perspective, and it’s not like I hope that my daughter does have the disease, it’s still an ablist perspective. She essentially told me to my face that this disease is so horrific that it would be better not to bring someone into this world should he or she have it. The problem with this perspective is that it assumes the disease IS the person – that there is no other depth that might be worth exploring seeing only the disease and not the humanity is ablist. Not to mention hurtful. My mother in law is not an evil person, she does not hate me – in fact she loves me, but her perspective, valid and understandable though it may be is still ablist at its core.
I think the same is true for people who are unable to empathize with Ashley. You are seeing her disease, her condition rather than her person – and her person, though it exists in a form that is unthinkable and totally foreign to you, is still at its core a person. She is fully human whether you choose to see that or not. The medical procedures that were done to her were a violation of her personhood. I’m not convinced that these extreme – and they are indeed extreme – procedures were the only route to providing a happy and fulfilled life for Ashley. Perhaps they were, but it is my experience with the medical community – and I have a great deal of personal and professional experience with the medical community – that one of the first things that happens once a problem is medicalized is that personhood is lost. I don’t doubt for a minute that the phsyicians and Ashley’s parents believed they were doing good. I don’t doubt that they considered all the medical ramifications of such drastic actions and possibly even some of the social ones, but I do doubt that they considered Ashley’s full personhood during their deliberations. Once a person becomes a disease, the medical establishment attacks that disease and or it’s symptoms aggressively. This is a model that has helped rid the US of pediatric HIV, dramatically reduced deaths from heart disease and many cancers – it’s highly effective at targeting diseases. It’s not necessarily the best model for managing impairment and disability. Disability has a strong social component and medicalizing people with disabilities ignores a person’s full humanity and life.
One other comment I’d like to address very quickly is the assumption that many people are making that being cared for by her family is naturally the best place for Ashley to be cared for. As I stated above, I worked with adults with developmental disabilities and of the 6 people I worked intensely with, 4 of them had experienced more sexual, emotional and physical abuse than I can ever begin to imagine surviving – all at the hands of their families. One woman had been prostituted by her parents beginning at the age of 9, had been beaten so severly that she had lost most of her hearing and much of her vision. Another man had been tossed into the basement of his home at a young age, and the only contact he had with other people was when someone would bring a tray of food down to him. He was sexually molested by his brother, he had almost no language development since he was basically a ferral child who was given food and water for sustinence. After he finally was removed from the custody of his family – after more than a decade of abuse, he entered various group homes and over time was taught to wash himself, dress himself (though he was blind), eat with utensils, understand language and use signs to communicate his needs/wishes. He loved music, smiled so big it could make your heart melt. With all the individuals I worked with, even the ones whose parents were loving and giving, they benefited greatly from being in a group home. They learned more independence skills, had more opportunities for socialization, etc. I’m not suggesting that Ashley’s parents are abusive toward her – based on the information I have, she’s well cared for and loved, however, it doesn’t mean that her family is the only place she could receive excellent care, nor does it mean that it is automatically the BEST place for her to receive care. Are there problems where individuals with disabilities are taken advantage of by care workers? Absolutely. However the arena of reputable group homes is far more regulated and controlled than family situations. Every case of abuse that I have seen or heard of first hand occurred within the family – not in group homes. This is a false assumption from which many of you are generating your arguments, Ashley is best if cared for by her parents and the treatment she received enables this care. The truth is, I’m not entirely convinced the best care Ashley could receive is automatically with her parents.
I guess to sum up, I’d just like to say that it disturbs me that so many people are willing to completely ignore Ashley’s full value as a human being.
Yes, I have been similarly disturbed by how those opposed to this treatment simply don’t care how much Ashley suffers, and are willing to sacrifice her entire quality of life and happiness on the altar of their political agenda, usurping this girl’s life for their ends and forcing their way into her family’s decisions.
Frankly, it’s inhuman and nauseating how every one of their arguments is based on ‘bodily integrity’ or her rights ‘as a sexual being’ and how few of them even address in passing her comfort or happiness, but I guess I should expect no less from people who don’t even view Ashley as a human being who feels and suffers, but just as a convenient political prop, an object to be used for their ends, and discarded, no doubt, when they’re done.
Look, everyone, I can do bile, strawmen, and insults too!
I don’t really think that those opposed to this treatment are callously using Ashley for political ends. I believe that their concerns are real, and are grounded in a differing opinion of what would be best for Ashley. I know that the entirely of my opinion about this treatment comes from considerations as to Ashley’s quality of life.
It’s valid to have differing opinions on that without automatically denigrating her humanity.
—Myca
I think all of this is very much a class issue – and largely a heteronormative issue too. I know, I know. It sounds bizarre.
But, as a middle aged lesbian of low income, with no extended family, I would rather be dead then severely disabled. I’m not so afraid of death that I would want to suffer to the degree that I would without money and without family.
Amp, excellent points. Your third point is tied to affective forecasting. Humans are really, really, really bad at guessing how a particular circumstance would make us feel. We grossly overestimate how happy a good thing (marrying the person we love) would make us, and we grossly overestimate how unhappy a bad thing (severing our spine) would make us. One of the few ways to combat that is to tell people, that most of the other people who have experienced event A had trouble with adjustment, but within a year found that they had returned to prior-event A levels of happiness.
I do not mistake nine-year-old Ashley for a fetus. The Ashley Treatment is a choice issue for me, because regardless of how anyone else feels about it, the choice is individual to her caretakers and her medical team. There is a huge difference between saying “it’s their decision, and it doesn’t matter what outsiders think” and advocating murder. The parallel to Terry Schiavo is that health care decisions must be made by a designated person or people, and that as long as the normal channels are followed, including medical ethics board oversight, then I think everyone else should stay out.
I don’t think that everyone who says “I wouldn’t want to live like that” is homicidal. It’s just the way our brains work; we literally can’t imagine wanting to live like that. When it is pointed out that people who have experienced traumatic changes is their abilities do continue to enjoy life, we’re much more likely to believe it. On the other hand, people in chronic pain really don’t want to live like that, so pain control is vital.
Really good point, Kaethe, and another reason that Amp’s Point #2 is so important. “What would you do if it were you,” isn’t a good question, because even if I were suddenly impaired, I wouldn’t be in Ashley’s position.
The reason I’ve got a living will is because I need to make the decisions now, not knowing what will happen, or how my condition might degenerate. That is, if I want my decisions about my life to have impact, I need to make them while I’m still able to communicate them.
This is totally different than any decisions that might be made about Ashley’s quality of life, 1) because she’s never been able to communicate her desires except in the most rudimentary of ways and 2) she has people around her who are able to make decisions about her condition as it changes, something I am not guaranteed I would have.
Would I want to die if my condition was Ashley’s, and I had an absolute guarantee it would never change, that I would never end up in constant suffering, unable to communicate my desire for it to end? No, I’d be happy living, and taking pleasure where I could.
However, I will never have that guarantee.
Activistgradgirl writes:
My thoughts on this are very much like yours, AGG. To bring up the Terri Schiavo comparison again, given Terri’s lack of a cerebral cortex, I don’t think there’s any theory of personhood under which Terri was a person in the last years of her life.
Ashley is, as you say, in a gray area. From what her parents write on the web site, and from the photos, she’s able to indicate when she’s unhappy by crying, and when she’s happy by laughing or grinning. (This is similar to how the 3 month olds I’ve known have communicated.) 3 month olds tend to be less likely to cry if they’re being taken care of by someone they’ve been around a lot (usually the parents).
I don’t think it’s “unequivocally clear”; I think that 3 month olds are in a gray area. But I think there’s a large and morally important distinction between the categories of “definitely not a person” and “in a gray area of personhood.”
As I wrote in a post about abortion last year:
So I do think there’s a least a possibility that Ashley is a person — “she’s in a gray area” — and that makes her morally very different from a fetus, or from Terri Schiavo.
I said that Ashley “doesn’t appear to regret being herself.” I think it’s safe to make that negative assumption about Ashley — and about any 3 month old — because, as you say, she’s almost certainly not able to conceive her existence in a way that would enable her to regret existing.
(I don’t think I made any statements about her desires to live or die.)
Q Grrl Writes:
Q Grrl, I get why this issue incorporates some class assumptions. (A tendency to ignore financial issues is particularly present in this case, since most of us are using Ashley as our prime subject of discussion, and it’s clear that Ashley’s parents are somehow able to finance taking care of her at home.) In a better society, there would be a sufficient level of free services available for all disabled folks (and their families, if they have families) so that this would not be so much of an issue.
But — and forgive me if I’m being thickheaded, please — why do you say it’s heteronormative? I can think of at least two real-world cases I know of in which a severely cognitively disabled person has been cared for by their same-sex partner (and there are probably many more I don’t know of), so it’s not the case that these issues are only pertinent to hetero families.
Amp: most gay and lesbian couples will not have the resources at hand to deal with this type of disability unless they have entrenched themselves in heteronormative practices, same-sex unions being one example of this. The existence of paired financial and legal resources, the existence of intact familial networks, etc. are mostly predicated on heteronormativity. I don’t think the care needed for a disability of this type is readily available to those who fall outside the hetnorm experience (this would include single mothers/parents).
activistgradgal;
the standard used by the supremes has nothing to do with mental capacities and has to do with level of dependence–another tricky point, but a different one. the argument is that a fetus or baby capable of surviving outside its mother’s phyical body is a person with a right to life. Ashley, as well as 3-moth old infants (and 3rd trimester fetuses, for that matter) meet that standard.
Amp if you think a 3 month old is in the gray area of personhood, when do you think that person becomes and actual person?
And, doesn’t this mean that parents should be able to make such life altering decisions such as removing organs that are full functioning and not linked to any health problem.
Rachel, I’m not Amp, but I agree with this “gray area of personhood” notion. I don’t think there is a single point. Most people achieve full personhood in the US at 21.
Nor do I think the full personhood idea is that closely linked to removing organs. There are parents, right now, making the decision to remove from their children organs that are fully functioning and not linked to any health problem. Some are having genital surgery performed on their children who are intersexed. Some are agreeing to split up their cojoined twins. I don’t like either of those decisions, but I did decide to have my daughter’s non-infected tonsils removed.
I’m really really uncomfortable with a discussion that doesn’t consider infants and children fully people, and by extension people with cognition similar to infants and/or children. I can’t articulate why exactly without taking a lot of time and thought, but in general it makes me uncomfortable and a little angry. Am I alone here?
Kate L.: Nope, you’re not alone. I find it offensive, and I’m frustated that issues involving disabled folks inevitably deteriorate into debates about who is a person. Peter Singer, anyone?
Skylanda: I’m not the person with the story of being in an elevator and hearing an assistant discuss being better off dead. I’m thinkig that was Amanda at Ballastexistenz — at least, I know she’s written of encounters very similar to that. I have had strangers tell me they’d rather be dead than live like me. Not quite the same as it coming from the person you rely on for care, which seems like a form of abuse or personal terrorism.
No, you’re not alone. I don’t think we need a grand theory of personhood to be able to defend the personhood of newborns. It’s nice when abstract theory tracks intuition but it’s just possible that the theory, and not the intuition, is defiicent when the two give divergent results.
Kate said, “I’m really really uncomfortable with a discussion that doesn’t consider infants and children fully people, and by extension people with cognition similar to infants and/or children.”
Me too. Sounds like ageism to me, and we can throw the ablist dynamic on top of it.
Sorry, but I have one basic question for people who unequivocally oppose the “Ashley treatment” and consider it a violation of her basic rights: In what way would Ashley’s life be better if she were allowed to attain her expected height and weight, have periods, and grow breasts? I can see some risks of the various procedures (estrogen can lead to blood clots, surgery obviously has risks, etc), but no real overt benefit to her from being taller or heavier or being able to get pregnant if she is raped. Sorry if that was obnoxiously blunt or otherwise obnoxious.
And, FWIW, I do regard Ashley as a person. Specifically, I regard her as a person in a very bad situation who deserves whatever help she can get and whatever relief from suffering can be offered to her. I don’t necessarily think that the treatment she underwent is the best thing in the world and I certainly don’t think that it should be advocated as standard treatment for severely disabled children, but it may be the best of a number of bad options for her and her family.
So it must follow that the idea that a fetus is not a person is also ageism, right?
I think if a 3 month old is clearly not a person it does follow that a 3 month old doesn’t, at that point in its life, have rights to autonomy which would be violated by his/her parents making choices about removal of organs. If a 3 month old is somewhere in the grey area, then perhaps he/she might have something like a very weak right (it’s a little unclear what this would mean in practice though). I don’t think it follows that a parent is completely morally free to remove whatever body parts they want from their child for a number of reasons. First of all, there are autonomy and rights issues which will come up when the child reaches full personhood (clearly this wouldn’t really apply to Ashley’s case). Second, it would be cruel to cause the pain involved in surgery and take the risk of death and health problems for no good reason–and this cruelty isn’t a matter of personhood. I certainly think someone who decides to get a cat’s appendix (do cats have an appendix?) removed for the hell of it is being cruel and is morally in the wrong.
That’s funny I was just thinking about this in relation to issues of autonomy last night. My parents forced me to have my tonsils removed (when they were not infected) when I was 12. They and the doctors were afraid that sometime in the future if I had a really bad throat infection they could begin to close up and I might need them removed then. I figured we should just wait until that happened and then there’d be no choice about it, but since there was no indication this really bad throat infection was coming, maybe I wouldn’t ever need to go through the pain and bother of surgery. I say forced, because I was quite resistant. And at age 12 I was certainly a person and in fact was quickly approaching the age at which one can make mature and responsible decisions about their own health. I don’t think this was a violation of my rights.
I know that the Supreme Court has not argued for the legality of abortion on the basis of mental capacities or personhood of the fetus. They explicitly refuse to take a position on whether a fetus is a person in a moral sense. They point out that in the legal sense put forth by the constitution there is no reason to think that a fetus is a *legal* person. I can totally see why the question of the legal standing of fetuses and abortion can be determined without appeal to moral personhood or mental capacities. It is less clear to me, however, that the morality of abortion or the moral status of a fetus can be determined without appeal to personhood or mental capacities. Surely people have argued in favor of this idea (Judith Jarvis Thompson has a famous “violinist example” to make this argument), but I’m not convinced by the arguments. And if these arguments did work I think they would be problematic regarding conjoined twins (if one is dependent for life on the other, does the independent one get to kill the other?).
Diane said, “In what way would Ashley’s life be better if she were allowed to attain her expected height and weight, have periods, and grow breasts?”
That’s a fair question, to which I would ask, “How would her life be worse if we did let all of those things happen?” I have yet to see anybody prove that her life will be better as a smaller person minus breasts and a uterus. I don’t think anyone has proven that breasts, periods, and uteri are going to make this girl miserable. People seem to routinely throw out the “periods and breasts make our lives miserable” argument without backing it up.
I think all we can clearly say is that her caregivers will have any easier time moving her if she weighs less.
To removal of or uterus and breasts doesn’t really improve the quality of life and could very easily have long term consequences that are unknown, and such an extensive operation should only be performed if we can say that risk of such an operation will improve her life. It seems to me that it has improved her caregivers’ lives, which may give her a rebound benefit, but I’m not convinced that it really will improve her life.
1) Her parents have said that her primary pleasure in life is being carried and held by them.Were she able to grow to full size, they’d no longer be able to carry her about.
2) She enjoys sleeping on her front, and genetically is likely to have large breasts. If her breasts are large, she will be unable to comfortably sleep on her front. Furthermore, her close family had breasts large enough to necessitate breast reduction surgery.
3) Her parents are concerned about the pain, discomfort, and emotional confusion that menstruation and the attendant hormonal shifts would cause in her.
They actually lay all of this out very clearly on their website. Their choices are grounded in an improved quality of life for Ashley.
To add to Myca’s list…
4. She is genetically at higher risk for breast cancer. I haven’t seen any details of what precisely the risk is, but if she’s a BRCA carrier, she’s at high risk for getting a form of breast cancer that is very likely to be aggressive, require chemotherapy (anyone want to argue that chemo isn’t uncomfortable?), and frequently fatal even when caught early. I’d get a double mastectomy if I were a BRCA carrier, but that’s a personal choice. If it’s a less clearly defined risk, the justification is weaker, but still present: she can’t do self-exams and if she ends up in an institution, the chances of her getting adequate screening is unfortunately low.
5. If she is sexually abused she will never get pregnant. Pregnancy kills. Not to mention what labor in a frozen body would be like. Of course, in the ideal world she wouldn’t be abused but in reality she is at high risk–in a world where 1 in 3 women at average risk are sexually abused at some time in their life.
6. She can stay with her parents and be cared for them longer than she would otherwise be able to. It’s all very well to say that her parents should be able to take care of her regardless of her size or that there should be a way to get them adequate help or institutions should be loving, healthy places. That’s not the reality. Her parents don’t think that they can care for her if she is adult size, the services that might allow them to do so don’t exist, and nursing homes are lousy places to live, even the good ones.
Kate:
For what it’s worth, my point was to argue that Ashley should be considered a person, with human rights. (I get the impression that people think I was making the opposite point.)
The consensus among many disabled activists that personhood must never be discussed, and to ever even consider the question is offensive, is not something I can agree with. In this case, I think it was fair of me to bring it up to rebut the argument that Ashley should not be considered a person.
* * *
On broader grounds, in very rare cases — such as Terri Schiavo’s — and also in the abortion debate, I think the personhood question is relevant. The importance of cognition is central to my belief system; it’s not a minor part of what I believe, and it’s not a post hoc rationalization that I only thought of to excuse my position in the Schiavo case. I’m genuinely sorry my beliefs make people feel hurt and uncomfortable. But although I’ve been criticized a lot for these core beliefs of mine, I’ve yet to hear anyone explain why they’re incorrect, or what alternative belief makes more sense.
“On broader grounds, in very rare cases — such as Terri Schiavo’s — and also in the abortion debate, I think the personhood question is relevant.”
I’m a bit confused. I completely understood where Michael Schiavo came from in the Schiavo case and supported him, and changed my living will accordingly and made my wishes known to my loved ones. I completely understand where Ashley’s family comes from in the growth attenuation situation, and don’t have a problem with their careful and well-thought through use of this objection. Terri Schiavo was a person deserving of respect; Ashley is a person deserving of respect. I’m not sure why it’s denying personhood to suggest that some persons are, through no fault of their own, in circumstances where they are a) completely dependent on others to make medical care decisions for them and b) unable to indicate consent to those wishes, and thus the appropriate guardians (Michael Schiavo, Ashley’s parents) are charged with making those decisions. Am I missing something?
“I don’t think anyone has proven that breasts, periods, and uteri are going to make this girl miserable. People seem to routinely throw out the “periods and breasts make our lives miserable” argument without backing it up.”
Come now, Rachel. You’re not aware that menstruation can cause pain? And that it’s one thing when you’re a fully functional human being and you understand what’s going on and you can pop an Advil and be done with it, versus being in Ashley’s situation and experiencing pain for no good reason whatsoever? And the ability to fit her brace around her breasts has been documented. Perhaps the better question is, what is so compelling about Ashley keeping her breasts, period and uteri other than those are what are seen as what normatively makes someone female?
“I think all we can clearly say is that her caregivers will have any easier time moving her if she weighs less.”
That’s a pretty big “all,” Rachel. This speaks directly to her quality of life.
Kate L.:
Let me let you know where I’m coming from, Kate.
In her 83rd year, my grandmother had a stroke, and lost the ability to move, feed herself, or control her bowels. At first, she was able to talk a little bit, and we tried physical therapy, but she was either unable or unwilling to do much. She’d always been very strong willed and stubborn, and when she set her mind against something, it just wasn’t going to happen.
My grandparents were not poor people, and my grandfather hired a live-in nurse to help take care of my grandmother . . . a luxury few could afford. Certainly, were I in her circumstance, my loved ones would not be able to afford the same for me.
Nonetheless, the care was not every day, and was not 24-hours a day, so everyone in the family pitched in to take care of her as well. We took turns staying up at my grandparent’s house in the guest room (another luxury few can afford), caring for my grandmother.
At first, she was kind of okay. I mean, she was able to communicate, smile, and enjoy her life. We wheeled her to the living room to sit in the sun with my grandfather, and they were able to eat together and sleep in the same bed. We fooled ourselves that progress was being made, or at the very least that she wasn’t getting worse.
Of course, she was.
It wasn’t long before her joints became so stiff and sore that she was unable to sit in the wheelchair without assistance, and soon after that, the pain of resting her rapidly dwindling weight on her rear end at all became too much. She began waking up in the middle of the night with discomfort, and sleeping close to my began to cause her pain. Furthermore, sleeping in the bed with her meant that my grandfather wasn’t getting but a few hours of sleep, so they moved into separate bedrooms.
Her doctors claimed that the pain was not physical, and put her on Haldol to manage it. That didn’t work. Things got worse.
We kept taking her to the hospital. We never stopped trying, but things kept getting worse.
By the end, she was screaming at the top of her lungs around the clock. Sometimes it would be a few hours between screams. Sometimes it would be 15 minutes. We tried as hard as we could to make her comfortable, to do something to make her hurt less, and it didn’t work. She just kept screaming. She lashed out against the pain sometimes, scratching and biting at anyone who came near. If the pain subsided, she would realize what she’d done and try to kiss the hand she’d bit by way of apology, but the pain always returned.
She could only talk sometimes.
One of the times she was able to talk, in a moment of lucidity in the middle of the night, during a bad spate of screaming in horrible fucking raw-throated agony she began to beg me to kill her. I was so scared of doing it and being caught. I was so scared of what my grandfather would think of me. I didn’t do it. Other members of the family told me that she’d asked them to kill her as well.
She didn’t have a living will. She should have. She passed in and out of lucidity so much, we would ask her questions and she wouldn’t answer. We couldn’t rely on her reliably communicating her desire for her life to end to anyone official by that point.
That’s what I’m scared of, Kate. Not ‘being disabled,’ but continuous, unending, torturous pain that I can’t do anything about. Dying slow when the only hope I have is to die fast.
I am terrified. Not of losing the use of my legs or arms, but of losing everything but the ability to feel pain, and feeling nothing but pain.
My grandmother finally died, and my grandfather passed away a few months afterwards. The manner of her passing had destroyed him.
I don’t want to do that to the people around me. I don’t want to do that to myself. If you want to call that abelist, that’s your call, but to do so, I think, speaks to a deep arrogance and a profound lack of empathy.
How does this connect to the Ashley issue? As I said before:
The problem is that none of us would ever have this guarantee, and thus have to base my decisions on what I can.
—Myca
I don’t think anyone is accusing you of being insincere. For what it’s worth, I’ve never doubted your sincerity. And the fact that I respect you and believe that you sincerely hold this belief is part of what scares me so much, to be honest.
I’m sure there are other people whose central beliefs include that being productive is central to personhood. People who consume more resources then they produce are non-persons, and resources shouldn’t be wasted on prolonging their lives. You seem to be sure that your definition of personhood is going to be the one that prevails and that only (supposedly) very rare cases like Terri Schiavo’s will result in disabled people being declared non-persons and killed. But there’s no reason to think that your definition of a person-shaped non-person will be the one that society accepts. Once we accept the category of someone who seems like a person but really isn’t one, the decision about which of us fall into that category will be up for grabs. People with physical and cognitive disabilities would surely be among the first to be defined out of personhood and denied the things we need to survive, but no vulnerable or oppressed person is safe.
The concept of equality is fundamental to a just and decent society, and defining some people as non-people flies in the face of that. It is scary and dangerous. That’s one of my fundamental beliefs. (And I don’t think that the point about fetuses is that they lack cognition: it’s that they’re literally, physically dependent on another person and therefore that their existence interferes with another person’s rights. That doesn’t apply to any post-born person, except I guess some conjoined twins.) So I guess we’re at a bit of an impasse.
The one case in which I could definitely see a prophylactic mastectomy making sense would be if she were a BRCA carrier. That’s an instance in which prophylactic mastectomy is a choice considered by and for all women, not just disabled ones, and her parents would have to make the same hard choices that everyone makes when confronted with a very high chance that they or someone in their care will get breast cancer. But I seriously doubt she is a BRCA carrier, because as I understand it, they’re also at much higher risk for ovarian cancer, and therefore I assume her parents would also have removed her ovaries. And also, we’re not just talking about Ashley here. We’re talking about “the Ashley treatment,” a treatment which is being held out as a model for “pillow angels” everywhere. Her parents’ website makes it clear that they expect mastectomy to be a routine part of that treatment, and only a very small percentage of the population carries one of the BRCA genes. If they’d said that Ashley had received a double mastectomy because of her rare and very extreme risk of breast cancer but that they didn’t expect that to be a widely-used aspect of this treatment, it would seem very different to me.
Speaking as a woman with really big boobs, I’d really like to talk about whether there’s a way to design harnesses and other assistive technology for women with large breasts, since I may someday need them and would prefer not to have my boobs removed. It just seems to me that this whole discussion seems to take for granted things as they are now, without asking how we got to the point where people could consider mastectomy as a standard procedure for seriously disabled women. For instance, is technology for disabled people designed with women in mind, or is it assumed that the default, normal disabled person is a man or a child? Is the problem with Ashley’s breasts her breasts, or the fact that people who design stuff don’t consider that the person they’re designing for might have breasts? These are, I think, valid feminist questions, and asking them isn’t any more utopian or judgmental than asking any other feminist question. Especially since they’re not questions that feminist blogs address with any frequency at all.
I really doubt that it’s a lack of empathy that swings people in favor of what was done.
I think the deciding factor is more what a person thinks of their body, and their experiences with pain of the kind the surgery was meant to prevent.
And, no, I don’t think the surgeries were extreme at all. Two small pieces of tissue removed from her chest vs. a lifetime of large, sensitive breasts? (Remember, they were already sensitive at age 9.)
Removing her uterus and appendix are routine procedures. She was given drugs so that she could recover free of pain. If her periods were to be painful, she would need drugs for a good part of every months, for years to come. I’ve tried taking advil for menstrual pain. Those drugs were burning a hole in my esophagus.
But really the only point I want to make is that it seems to me more a difference in how people view altering the body than how they feel about the disabled, that swings their opinion one way or the other.
I am disabled and I have also been a caregiver for my late spouse.
Just because I oppose the procedure *doesn’t mean* I have no respect, appreciation or concern for these parents that have a really long road ahead of them raising this girl.
I don’t blame *them.* They love the girl, they believe what they are doing is best for her.
They did move it out of the private sphere of their lives and put it on the web.
I blame the doctors.
I distrust doctors just as much as some upthread fear disability. I’ve been and seen misdiagnoses and inappropriate attitudes towards someones diagnosi’s many times. I think that just because 40 physicians review a procedure doesn’t make it right.
Ashley has brain activity. It *isn’t like everyone elses* but it is brain activity. She has already been born.
This is about the next family and *set of doctors* that consider this.
That’s why we all have to have this discussion.
Why are we even talking about euthanasia and assisted suicide here? The “I’d rather be dead” comments bother me a lot too. But in this case, there was no reason for the issue to be discussed. Ashley’s parents are not even contemplating killing her, thank goodness. (If they were, it would be premeditated murder, and I suspect that a lot of scary ableist people would be sympathetic to them, completely unlike the reaction when parents murder a non-disabled child.)
However, the discussion is not about whether Ashley has the right to live or the “right” to be killed rather than continue supposedly unbearable existence. The discussion is about whether Ashley has the right to grow into an adult body, or whether she is better off with the treatment. I think perhaps the scariest thing about this is how quickly any discussion at all of anything to do with disability turns into a discussion about what conditions are worse than death.
>Some of us never have any pain during menstruation. It is possible.
This demonstrates my point terribly well.
If you were familiar with that kind of pain, you wouldn’t think that dealing with it by taking drugs through a feeding tube was no big deal. You wouldn’t think that surgery to prevent it was so extreme. Which is I think that the pro-treatment position is based on empathy.
“First of all, where are you getting the feeding tube aspect? Although I could be wrong, I haven’t seen anywhere that has stated that Ashley is on a feeding tube.”
Bean, it has been reported in the press that a feeding tube was surgically implanted because she doesn’t have a swallowing reflex.
I believe the feeding tube is also described on her parents’ website.
The assumption is that it might cause pain.
Sydney and Maddox’s nanny Sara used to be a caretaker in a group home for mentally disabled people. One of the residents was an adult woman with a condition similar to Ashley’s, in that her mind was apparently at an infant’s level. Sara told me that this woman found her period (which she couldn’t understand) horrifying and unpleasant each and every month.
Can we know for sure that Ashley would find menstruation painful, physically or emotionally? No, but we also can’t know for sure that her appendix would have ever needed to be removed. In both cases, the treatment is precautionary.
Me too! In general, I find the sexual politics of Ashley’s parents’ website disturbing.
I don’t think this is fair. Maybe they’re assuming that they won’t be able to provide 24/7 care for her, even if they are her primary caretakers, and that there will be dozens of assistants and helpers over the coming decades.
Strictly speaking, it’s not an either-or choice; they can both do everything they can to protect her from rape, and want to take precautions in case “everything they can” isn’t enough.
But I don’t think that’s a good enough reason for the surgery; after all, if she gets pregnant, they could get her an abortion, which would be intrusive and unpleasant, but not more so than a hysterectomy. I wonder if the parents are pro-life, and thus would not be willing to consider an abortion if Ashley were pregnant.
In any case, I agree with you that the rape-prevention argument for a hysterectomy is both disturbing and inadequate. However, I do think the argument that not menstruating might make Ashley happier and more comfortable than if she did menstruate, is not unreasonable.
Of course it can be dangerous to talk about personhood, but isn’t it just as dangerous not to talk about it and to just say, “hey, whatever we currently think of as a person, that is what a person is and we shouldn’t ever actually try to get clearer on the concept of personhood to check and see if our views about who is and who isn’t a person are at all consistent”? If this was the approach to questions of moral personhood in the last few hundred years wouldn’t we still be working on the assumption that women and African-Americans are not persons? I assume what this view will mean is that generally all and only humans will be persons because this is the pre-theoretical assumption about personhood (that is, this is the unexamined view which our society has given to us). Why should we accept this unexamined view from a society we know to be horribly biased in a variety of ways? Everything else society tells us we should question, but when it comes to personhood we have to just accept what society says?
You’re right that if we take that view of personhood to be law we make sure that disabled people can’t be excluded from it. But it also guarantees that no one else can be embraced in it. Suppose we discovered two races of aliens on a distant planet. Both the races look just like cats, but race A has emotional and cognitive and social abilities just like humans. Race B has cognitive and emotional and social abilities just like cats. According to the theory of personhood Amp and I have suggested (one that takes mental capacities as relevant to personhood) we have a reason to think that race A are persons and race B are not. Thus we would treat race A and race B very differently. But on your theory “if it seems like a person, it is” both of the races of aliens cannot be people. Similarly, on your theory the great ape project–which argues that apes are persons based on on their mental capacities is nonsense. Apes don’t look like humans, therefore they cannot be persons. But hey, all those experts in ethics, primatology and psychologists involved in the GAP must just be nuts (and according to other posters in this thread ageist too!) because they accept that mental capacities are relevant to personhood.
I agree with your emphasis on equality. Notice, though, that emphasizing equality can’t get you out of the question of who is and is not a person. After all, you don’t advocate equality for every living being right? Are my cats persons? (Though I’m somewhat sympathetic to animals rights and totally sympathetic to concerns for animal welfare and a vegetairan, I sure hope they aren’t. Because I got them neutered and if they are persons then I violated fundamental rights of theirs by taking away their autonomy in reproductive choices and sexual ability.) So you still have to deal with the question of personhood in order to even get equality going.
I just don’t understand the argument that whether or not Jane Doe is a person is a matter of whether Jane Doe is dependent on another human being for life. As you point out conjoined twins are in this position. I would think this is a fatal problem for the theory. Also, note how easy it is to go from person to non-person. Suppose I’m in a car accident and a pole crashes through the car and traps me in the car; it is just inches from peircing my chest through my heart. The pole is sitting on my passenger’s legs. My passenger can move her leg out from under the pole and get out of the car, but if she does that the pole will slide foward and will pierce my heart. Since in this case I am completely dependent on another person for life, I am not a person. But if the paramedics come and manage to safely move the pole, suddenly I am a person again. I just can’t accept any theory which treats personhood as something that changes by the minute. I think personhood is an intrinsic characteristic of a being, not one that changes with the external situation a being is in.
I’m sorry you find it offensive, horrific and disgusting. Notice that your theory of personhood makes my cats persons. While I love my cats, I don’t think they are persons. I’m not disgusted or horrified or offended by this notion. But I do have trouble believing that my cats are really persons. Do you think that most mammals are persons?
Also, as I said above, the idea that personhood is a matter of dependence runs into numerous problems. One of the biggest ones is that some conjoined twins turn out not to be persons on the dependency view. Now not only do I not believe this, but I find this implication offensive, horrifying, and disgusting.
If I have to choose between a theory which says that an average 21 year old woman who shares a liver and reproductive tract with her conjoined twin is not a person and a theory which says that a 3 month old baby is in the grey area of personhood, I’d take the latter hands down.
[Edited to add: Whoops, crossposted with activistgradgirl, who said some of the same things I said, better. Oh, well. –Amp]
Sally, responding to me, wrote:
I’m not certain that my standard will prevail, but I think there’s a good chance it will. (The fact that most of the people arguing for Terri Schiavo’s right-to-life argued passionately — and against all science — that Terri was able to think implies that even they agreed that her cognitive abilities were an important factor in establishing her right to life.)
I would just argue that the standard I’m arguing for should prevail, because IMO it makes the most sense.
There are slippery slope concerns, as you rightly point out — but that’s not a problem unique to the standard I’m suggesting. For instance, you say “the point about fetuses is [not] that they lack cognition: it’s that they’re literally, physically dependent on another person and therefore that their existence interferes with another person’s rights.” But the distance from what you’ve said here, to saying that dependency should mean reduced rights, is very small.
The idea that dependency reduces one’s right to life is, or should be, very disturbing to us. Dependency is a normal human state for much of our lives, after all; there are significant ways in which infants are “literally, physically dependent” on other people. The same is sometimes true of disabled adults, of sick people, and of the elderly.
Now, I realize that’s not how far you wanted your “dependency” standard to be taken. But how can you be sure sure that your definition of personhood is going to be the one that prevails and that only very extreme cases of dependency like pregnancy will result in people being declared non-persons and killed?
My point is, whether we go by your standard or by mine, there’s a potential slippery slope which would have to be resisted. I don’t think that, in and of itself, proves that either standard is wrong. But I do think it makes more sense to say that a fetus has no right to life because its mind does not yet exist, then it does to say a fetus has no right to life because it is physically dependent on another person.
I think you’re misrepresenting the non-cognition-based pro-choice argument, amp. It doesn’t focus on dependency: it focuses on the woman’s right to bodily autonomy. In order to outlaw abortion, you’d have to compel a woman to give over her body to the care of the fetus, because we haven’t yet developed a way to incubate a fetus outside a woman’s womb. There’s no equivalent for a born person. It is possible for the parents of any born child to stop caring for that child and for the child to continue to exist. When a parent can no longer care for a child, they have options other than killing the child, such as finding other relatives to care for him or her or, usually as a last resort, falling back on the resources of the state. So I don’t see a slippery slope. The point of the pro-choice argument isn’t dependency. It’s a special kind of dependency that exists almost exclusively in the case of fetuses.
You know, it’s funny you mention this, because as Michael Berube has pointed out, arguments about the non-personhood of women and black people were rooted very definitely about ideas about the relationship between cognition and moral status. There was, of course, ample evidence that white men were smarter than everyone else. Literacy rates, success in business, art and the sciences… all sorts of indicators bore this out. And when people like Mary Wollstonecraft and later Frederick Douglass argued that this achievement gap was rooted in culture, not biology, they were laughed out of the room by folks armed with the best scientific evidence, which used all sorts of measurements and statistics to prove that women and Africans just weren’t as well-endowed in the brain department as white men were.
Historically speaking, I think you’ll find that when people relate moral status to smartness, it’s generally served to reinforce, rather than challenge oppression, because powerful people get to define what smart looks like and because oppression tends to be unconducive to healthy intellectual development.
One point about the whole euthenasia/human rights question. Not sure what anyone will make of it. What do you think would have happened if Ashley’s parents had, when they knew her diagnosis and prognosis, had said “we don’t want any extraordinary measures taken, let her just die naturally in our arms”? The answer: she would have died in their arms, without a feeding tube but with her uterus and breast buds. And you would never have heard of the case. It happens relatively frequently and without much controversy. Certainly without multiple blogs discussing it. No one (well, few people) call parents who decide to give their critically ill infant comfort care only criminals and they rarely feel obliged to set up web sites explaining/justifying/rationalizing (depending on how you feel about their actions) their decisions. Not sure what that means, except that, really, I don’t think that there’s a slippery slope issue here. We’ve already slid far further than that, if it is a slide. Which is not to say that this isn’t an ethical problem in its own right, just that, IMHO, the phrase “slippery slope” isn’t apropos.
And also, we’re not just talking about Ashley here. We’re talking about “the Ashley treatment,” a treatment which is being held out as a model for “pillow angels” everywhere. Her parents’ website makes it clear that they expect mastectomy to be a routine part of that treatment
I completely agree that expanding the “Ashley treatment” to standard of care for all severely brain damaged children is inappropriate. It may be right for some children, but it certainly isn’t for all or most cases and the decision needs to be made on a case by case basis and only after careful consideration and evaluation of the situation. As an option, it is fine. As the option, it is terrible.
Speaking as a woman with really big boobs, I’d really like to talk about whether there’s a way to design harnesses and other assistive technology for women with large breasts, since I may someday need them and would prefer not to have my boobs removed
Me too. But AFAIK, there isn’t any such device and it wouldn’t make the development of such a device any more likely if Ashley kept her breasts. She’d just be among those suffering for its lack.
bean: I may be wrong about this, but I have the idea that Ashley’s parents are relatively old and that she has no siblings or other close relatives. So it is highly likely that she will at some point need to go into an institution. Furthermore, she might be temporarily outside of her parents’ care because of respite care, hospitalization for illness, etc. She can’t resist sexual assault and can’t even say what has happened to her if it does. I agree that people who work in nursing homes and hospitals ought to be subject to close scrutiny to make sure that they are very, very unlikely to be the sort of people who would rape a helpless child, but nursing home attendants are paid squat for terrible working conditions so getting only the best, most moral people to work under those conditions is difficult. Some people work in nursing homes and other institutions because they genuinely want to help people, don’t mind the (literally) shit, and so on. But not all. Again, how will leaving her vunerable to pregnancy make her or anyone else less likely to be raped?
Also, if we do want to talk about ‘what would you want if it were you’ and ‘the gendered nature’ of this, let me be really clear.
If it were me, and my primary pleasure in life was being held and carried by my parents . . . and I had testicles that I would never use (and could never use ethically). . . I would give them up in a quick damn minute to preserve my happiness.
Just as I would give up my tonsils or my appendix.
There’s nothing special or sacred about my sex organs aside from their function and the use to which they are put.
I was going to stop posting to myself, really I was, but then I saw that someone had brought up (non-human) great apes. So I had to add one more bit…There is a test for self-awareness called the “rouge test.” In this test, an animal’s body (usually its face) is marked with a colorful substance and the animal is shown a mirror. A “positive” test is one in which the animal examines the mark on its face and indicates that it understands that the mark is on itself (ie rubs the mark on its own face, not on the mirror, does not react to the image in the mirror as it would to another of its own gender and species, etc.) Great apes, including humans, pass this test. So do dolphins and elephants. One elephant, after checking out the mark, went on to examine her teeth and remove bits of gunk that had built up in them. In other words, she had sensory integration. If that’s not self awareness then what is? For whatever the information might add to the already confusing debate;-)
I understand the distinction. I even agree with it. But I don’t understand why you seemingly believe that the distinction you’re making is completely immune from other people reinterpreting it and slippery slopes. Making any kind of dependency a moral factor brings up the possibility of a slippery slope, as far as I can tell.
And how did that turn out, in the long run? Would you say that the widespread consensus nowadays is that blacks and women have no personhood at all? Obviously not; although racism and misogyny remain widespread problems, in the long run the views of Wollstonecraft and Douglas won the cultural debate. No one except KKK-style extremists nowadays would argue that blacks and women are unable to think and therefore have no human rights, and even racist politicians nontheless favor legal equality between the races and the sexes. [*]
The idea that intelligence and personhood are related did not cause racism or sexism to come about. Rather, racists and sexists used these concepts in a post hoc manner to justify their already existing biases.
(They also used the concept of dependence quite a lot, by the way; slaves were said to depend on their masters for survival and civilizing, and because of that dependence couldn’t be freed. And the pernicious ways dependence was used to keep wives in their place are, I trust, too well-known to require me to go over them.)
Historically, ideas can be used for good or ill. That a warped misrepresentation of an idea has been used for ill, does not prove that the idea is wrong.
([*]I don’t deny that there are still people, like the authors of The Bell Curve, who argue that blacks and/or women are less intelligent than white men, but they don’t argue that therefore rights should be taken away from blacks and women.)
Dianne: Ashley’s parents are “typical” late-thirties / early to mid-forties and she has two siblings, a brother and a sister, who are close in age to her, per the pictures on the family’s website. There is nothing to suggest that the parents aren’t in good health.
I agree with your slippery slope. Ashley’s parents could also issue a DNR order if she were to fall ill and it wouldn’t be the subject of multiple blogs — no one would know.
Myca: I agree with your statement that there’s nothing special or sacred about sex organs aside from their function and use. As a woman who is through with childbearing, I have about as little attachment to my uterus as I do to my tonsils or appendix. It could be gone tomorrow and why would I care?
As one of those who stated that my living will probably wouldn’t let me get to the point of Ashley’s disability–I was not saying that Ashley would be better off dead.
People have pointed out that comparing Ashley to a “3 month old” is inaccurate–because despite perhaps having those limitations, she’s a “3 month old” with 9 years living experience.
For an adult to be put into a situation like Ashley’s would also be different. You’d be dealing with an adult with however many years experience living a “normal” life, experiencing a extreme situation which takes away their physical and mental abilities. It’s not the same as Ashley’s situation, and cannot be the same as Ashley’s situation. That adult is being deprived of abilities which pre-existed, while Ashley never had those abilities and thus cannot be deprived of them.
Maybe this should be a call for those of us with living wills to look at them and make sure we understand what they are saying. I’ve already been through this with my father–he underwent surgery around the time of the Terri situation, and he and his doctors made sure that WE (him, his family) understood what his living will actually meant. Many living wills will come into effect in situations less extreme than Terri’s; situations that might leave us like Ashley.
I am comfortable with that. We hear about the “miracle” survivals and recoveries, but there is a reporting bias there. We don’t hear about all those who don’t have miracle recoveries.
I, personally, am against many extreme medical procedures. If I ended up in a situation where a transplant was required, I would probably not go forward with it. That does not mean that I think that others shouldn’t–if someone else is comfortable with that type of medical intervention, that’s their choice.
And, ironically, I am a stated organ donor.
As for Ashley: it appears that she enjoys the life she has, that her treatment will allow her to continue to enjoy that life as she has. And I think that’s wonderful.
>Second of all, I didn’t say that menstruation couldn’t cause pain. I’m simply addressing the assumption that it will.
It’s the just the likelihood that something might happens that determines whether you prevent it from happening. It’s also how bad you think the consequences of it happening will be, and the relative benignness of the preventative measure.
If you know that menstruation can be Very Very Bad, then a hysterectomy might not seem so radical.
Ah, but all the cool kids are talking about autonomy and personhood…
Ashley’s parents not particularly old, but they stipulate that sometimes she is looked after by (at least one of) her grandmother(s), and that the stunting will enable the grandmother to care for her longer.
>>It’s the just the likelihood that something might happens that determines whether you prevent it from happening. It’s also how bad you think the consequences of it happening will be, and the relative benignness of the preventative measure. >>
The only pleasures Ashley really gets in life are sensual (in the sense of — senses) — being in a pleasing or comforting visual environment, perhaps smelling familiar smells, listening to familiar voices/music, being warm, fed, comfortable, and free from physical discomfort. And since whatever subjective happiness she derives is so based on those sensual dimensions, it seems rather important to keep them as stable as possible. An imperfect analogy, but I bet her family focuses on keeping her out of drafts more so than her siblings – not only because she can’t move away from a draft, but because her pleasures are so limited that the least they can do is keep her draft-free. Being in a draft likely bothers her more than it does a normal sibling – so it stands to reason that feeling menstrual pain, even if slight, might bother her more than a normal sibling, who can put it in context and who derives pleasure from many, many other aspects of life and can overlook the discomfort more easily.
. . . and who can understand that there’s an emotional component to menstruation as part of sexual maturity, and who are able to derive pleasure from their sexuality, and who understand that the pain is temporary . . .
An interesting read although I was dumb founded when someone suggested that a 3 month old didn’t have a right to life and further suggesting they were on personhood par with cats or other animals. But then again we do get the occasional story about infants turning up in dumpsters so I guess its not unheard of.
I am all for a grand unified personhood theory that makes sense, but every one I have read breaks down somewhere. I don’t think there is a meaningful difference in the cognitive ability of a baby a day before birth and a day after birth.
>It’s the just the likelihood that something might happens that determines whether you prevent it from happening.
Ack! I meant to write “It’s not just the likelihood…”
It’s all slippery slope.
I don’t understand why questioning anything would be wrong. What possible definition can there be of “personhood” that isn’t sometimes problematic?
It’s not just a question of the possible harms of menstruation, but also the possible harms of undergoing major surgery that will have lifelong ramifications for her body and her life
That’s always the question in medicine: do the benefits of the proposed intervention outweigh the risks of vice versa? In this case, Ashley’s parents and her doctors, people who know her and care for her, decided that the benefits outweighed the risks. As far as the hysterectomy is concerned, the main long term problem she is likely to face is abdominal scarring which will make any future abdominal surgeries slightly more difficult. Since (I think) they took the appendix out at the same time, there’s a reasonable chance that she’ll never need any further abdominal surgeries. Again, I don’t know that this was “the” right decision, and probably isn’t the best solution possible in the ideal world, but I think it may well have been a right decision for Ashley and her family given the options available.
On the subject of menstral discomfort, are the people who say that menstration is no big deal taking into account the fact that she is essentially immobile? One of the best non-pharmacologic methods of decreasing menstral pain (for me and others I’ve talked to at least–I haven’t seen any formal studies of this) is movement. Frankly, menstation while being unable to move, with or without ibuprofen, sounds hideous to me. But that may be just me.
I don’t think there is a meaningful difference in the cognitive ability of a baby a day before birth and a day after birth.
Actually, there probably is. A fetus, even a fetus one day before birth, exists in a low oxygen environment. The cerebral cortex doesn’t work so well in a low oxygen environment. If you put an adult in an unpressurized airplane at 30,000 feet they will loose conciousness very rapidly. So regardless of the fetus’ neurological development, the cortex may not be operating yet. Additionally, the uterine environment is low stimulus. The main stimulus a fetus experiences is the sound (quite loud, apparently) of blood rushing through the placenta. It may be dimly aware of light and the amniotic fluid may taste different depending on what the mother ate, but those sensations are quite limited. Compare that to the experiences of a newborn: bright lights, different noises, the faces of its parents and birth attendants, the smell of colostrum (and possibly meconium), etc. Can a conciousness exist in the absence of stimulus? Adults go crazy very quickly if not given adequate stimulus (see poor Jose Padilla, for example). Perhaps fetuses don’t go crazy because they do not have the level of awareness that necessiates stimulus and companionship yet.
If cognition is the primary/only factor that someone uses to determine personhood, then it seems to me you would have to set the cognition bar pretty darned low to maintain anything approximating a humane society. The other thing is, a standard of personhood is not a “provable” proposition, and is inherently irresolvable except at the outer limits — as in the case of brain death. Whatever state short of brain death exists can be argued as sufficient cognition to qualify as personhood. So to state that no one has proved your working definition of personhood wrong is beside the point. It floors me that you think a three month old might not have sufficient cognition to be human — by three months old a baby is smiling purposefully, in reaction to your smiles and in order to get you to smile. Even within 24 hours a baby is noticeably reacting to the difference between his mother and other humans. The other thing, and the thing that always gets to pro-life advocates, is that whether we like it or not, we view end of life determinations differently partly because of the notion of stasis — Terri Schiavo’s status could not improve, but a normal infant only becomes more and more cognizant until normal cognitive skills (whatever your definition of that is) are achieved. I will say that I categorically reject any argument that would resolve Terry Schiavo’s fate based on whether she was a person. She was a person; the issue was whether it was required that she continue to be forcibly maintained via complicated feeding arrangements in a manner that she ostensibly would have rejected had her cognitive level allowed her to communicate her wishes. I am pro-choice, but I am not going to have the tail wag the dog and come up with a theory of personhood that questions the personhood of newborns (or viable pre-borns) in order to quiet whatever ethical qualms I might have about abortion.
For those who believe in the primacy of bodily integrity, are you also bothered when parents of conjoined twins decide to give them separation surgery?