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Ashley X - Avoiding Oversimplification
Anne Corwin   Jan 8, 2007   Existence is Wonderful  

In discussions surrounding bodily-autonomy issues associated with disability, there can be a tendency on all sides to attempt to reduce everything to gut reactions and sound bites when, in fact, a more complex analysis is needed.

What bothers me most about the case of Ashley X is not so much the kind of life Ashley is likely to have now that she has had her growth and physical development arrested, but rather, the kinds of statements various people (including Ashley’s parents) are making in defense of the procedure, in particular those that suggest that certain minds shouldn’t go with certain bodies. 

Who gets to decide that another person’s mind doesn’t “match” their body?  If a person chose to modify themselves, say, to look more like a cat, does that mean that their existence becomes “grotesque”? 

What, exactly, does calling a perceived mind-body mismatch “grotesque” accomplish? 

It certainly doesn’t contribute toward the development of an appropriate ethical understanding of Ashley’s situation and others like it.  And it would be horrific if hospital ethics boards routinely approved radical modification of children based on someone’s notion of which kinds of minds “go” with which kinds of bodies.  Clearly, the statement that a mind like Ashley’s doesn’t belong in a particular kind of body is not a very substantial argument, or even an argument at all (particularly if it comes from someone who is generally in favor of people being able to modify themselves to look however they wish).

Perhaps Ashley is likely to be more physically comfortable as a smaller person, and certainly, there is nothing inherently wrong with being small, even as an adult.  It’s not that she’s going to be small, it’s how she got that way, that is driving the widespread debates on this matter.  The issues here are numerous, and yet very few of the most important issues have anything to do with the nature of Ashley’s present, modified configuration.  Among the important issues to consider are:

1.  That something radical has been done to the body of a person who had no way of expressing consent or resisting what was happening to her. 

The “resisting” part is important.  Of course, it does not make sense to claim that clear consent is necessary in order to do anything to anyone (I’m sure that most five-year-olds don’t consent to getting their booster shots, but from an ethical standpoint, it is fairly obvious that protecting children against fatal disease is more important than sparing them the momentary pain and loss of bodily autonomy that getting the shot entails). 

However, the fact that some people can neither consent to nor resist anything that is done to them means that extreme care must be taken to protect such individuals from abuses—including abuses of power.  When someone literally cannot protest anything that happens to them, they are at the absolute and utter mercy of all those around them.  This means that care must be taken not to do things to certain people just because their helplessness makes it possible.

2.  While parents are expected and indeed, obligated, to make medical decisions on behalf of their children, this does not mean that any decision a parent makes ought to be beyond scrutiny simply because the parents make this decision based on love and good intentions. 

I have seen quite a bit of commentary along the lines of, “Well, until you are in the same position as Ashley’s parents, you have no right to judge.”  Note first that bringing up the serious ethical implications of the “Ashley Treatment” is not the same as judging.  When situations like this come up, it is absolutely unacceptable to simply take them at face value and assume that everything is fine because the parents in question love their child.  Or, at the very least, the fact that the parents love their child is not, in and of itself, a justification for anything. 

That love, and the good intentions behind the actions taken, can be fully acknowledged without deciding that the action is utterly beyond scrutiny.  Why should any action be beyond scrutiny based on the motivations behind it alone?

3.  There does seem to be some validity to the argument that the procedures applied to Ashley could potentially end up saving her life.  However, there is also validity to the argument that the same treatments applied to any child, disabled or not, could also end up saving that child’s life. 

Objectively speaking, removal of any person’s reproductive organs will minimize the chance of that person dying from cancer or disease of those reproductive organs, however, I highly doubt you will come across any arguments that all children should be given the “Ashley Treatment” on the basis that it could prevent disease later in their lives. 

When it comes down to it, people have only (a) the rights they are capable of articulating and fighting for, and (b) the rights that the society they live in grants them.  Therefore, sentient persons must take full responsibility for the process of coming up with and assigning rights appropriately.

Does any child have the “right” to not undergo the Ashley Treatment?  Perhaps all children ought to have their reproductive organs removed—just think, you could eliminate your daughter’s chances of ever getting breast cancer by removing her breasts at a young age. 

She wouldn’t be able to breast-feed, but at least she wouldn’t die of cancer.  Removal of the uterus might be considered along similar lines—not only would it prevent any girl’s possibility of getting uterine cancer, it would also let her avoid the pain and inconvenience of menstruation.  And, it would have the added benefit of preventing her from having children later in life, thereby avoiding adding to a burgeoning population.

Note that the above is just a thought experiment—I do not want to be quoted out of context as someone in favor of surgically modifying all children.  Rather, it is intended to encourage people to think about the strength of their arguments.  If it would be unethical to perform a pre-emptive surgery like Ashley’s on a nondisabled child, based on the same medical notions (e.g., cancer risk), why would it be unethical?

I am anticipating that some might respond to this question with the suggestion that whether or not to apply a procedure like the Ashley treatment is contingent upon an attempt to optimize constraints.  For a person that is fully mobile and communicative, organs like breasts and a uterus are much more likely to be utilized by their owner—therefore, to remove them would be to apply a constraint inappropriately. 

However, for a person that cannot move or communicate in a recognizable manner, removing these organs might allow for a comparatively less constrained life given that person’s overall set of circumstances.  This kind of response is based on a constraint-centered set of ethics, and is probably valid within that framework, but is this really the only applicable framework?  And if so, why? 

The point I’m trying to make is that treatments like Ashley’s do have the potential to set a kind of precedent, whether they intend to or not.  This situation demands that we ask difficult questions regarding how people with disabilities should be treated in comparison to nondisabled people. 

Obviously the solution is not to treat everyone exactly the same—a person’s morphological configuration will affect how they ought to be treated (consider the fact that it doesn’t make sense to screen women for prostate cancer).  But you can apply a consistent set of ethics without treating everyone exactly the same, and that is what is called for when considering disability issues.

4.  It’s not the way Ashley ended up being configured—I would be the first to argue that there’s no such thing as a “normal” body in the first place, and a girl without breasts or a uterus is no less of a person because of the absence of those organs.  Rather, it’s the means by which Ashley ended up in that configuration, and the various assumptions made in an effort at bolstering justification beyond the purely medical.

For instance, the assertion that Ashley has, and will always have, “the mind of a three-month-old” is simply and factually incorrect.  She doesn’t have the mind of a three-month-old—she has the mind of a developmentally disabled nine-year-old.  And when she is thirty, she will have the mind of a thirty-year-old, regardless of her level of disability at that point in her life.  Not an average thirty-year-old, but a thirty-year-old nonetheless.  Using these age metaphors (because that’s really what they are) tends to obfuscate, and to discourage people from seeking details. 

Nobody really can say how Ashley experiences the world, but it’s unlikely that she experiences it the way someone who has only lived for three months experiences it.  I haven’t seen any documentation on whether Ashley has undergone any brain scans, whether anyone has attempted to establish that she might possibly be communicating (aside from her parents noting that she seems to prefer lying down to sitting in a wheelchair), or any specific statements on how her “mental age” diagnosis was arrived at.

I am not saying that it should be assumed that Ashley is actually performing quantum physics calculations in her head, but when someone has close to zero motor/muscular control, the fact that they cannot speak or control their eye gaze should not be assumed to be indicative that she cannot think complex thoughts.  If Ashley’s lack of motor / muscular control is the only criteria that her “mental age” calculation is based on, that’s a big problem. 

I am not saying this to be politically correct, I am saying that from the scientific perspective, I think it is inappropriate to assign and assume a mental state to anyone based on their motor abilities.  And I am not willing to just assume that the doctors have performed an exhaustive attempt at assessing Ashley’s brain functioning—I am not willing to take medical opinion on faith, when it comes to me or anyone else. 

Doctors can be wrong, and they can also be negligent—when you have a group of doctors and an ethics committee perhaps this possibility can be minimized somewhat, but it cannot be emphasized enough that assessing the mental functioning of someone with severe physical limitations is extremely difficult.  To what degree was this difficulty taken into account when assessing Ashley’s mental state—or was the assessment simply made based on the idea that it was necessary to assign her to a category like this in order to guide her treatment regimen?  This isn’t special pleading or wishful thinking,  it’s a request for information.

If anything, people need to be allowed to ask these questions…it shouldn’t be taboo to ask them.  I don’t want to see a “bioethics versus disability rights”, or worse, an “ethics community” (whatever that is) versus “disabled persons” divide.  Ethics must include disabled people in the set of persons to which ethics are properly applied, or else they’re not really ethics.  This doesn’t mean treating everyone the same, or not recognizing the difficulty of caring for the severely disabled, or not ever doing anything medically to a person who cannot consent or protest.

However, the power imbalances experienced by those who cannot easily defend or assert themselves are very real, and the potential implications of the Ashley Treatment for persons who cannot walk, talk, feed themselves, etc. must be considered seriously.  When you yourself cannot speak or eat without assistance, it must be tremendously disturbing to hear about people being recommended for radical nonconsensual procedures (or even euthanasia) based on the fact that they share disabilities quite similar to yours in some respects. 



Note:
Please don’t say I am not thinking about the parents, or the health and safety concerns of caring for someone with severe disabilities—of course I am thinking of these things, and I do think that better support needs to be provided to families and caregivers.  Nothing I have said in this writing contradicts the idea that more support is needed—it’s just that the need for support is already widely acknowledged, and I don’t think that my writing about it would really add much of anything to the ongoing discussions.  Rather, I’ve chosen to focus on some issues I haven’t seen raised quite as frequently.

Anne Corwin was an IEET intern 2006-2007, and is an engineer and technoprogressive activist in California. She is a member of the Board of Directors of the Humanity Plus, and is active in the longevity movement through the Methuselah Foundation and in the neurodiversity movement addressing issues along the autism spectrum. Ms. Corwin writes the blog Existence is Wonderful and produces a related podcast.



COMMENTS

You seem to be questioning the possibility of an accurate diagnosis of static encephalopathy or, possibly, questioning that there even is such a diagnosis.  Why?

Anne, thank you.

Re the comment about the accuracy of diagnosis and more:

I am the mother of a 21-year-old son with severe cerebral palsy : or static encephalopathy : Ashley’s diagnosis. A diagnosis of static encephalopathy merely explains that the child sustained brain injury—perhaps a stroke or brain bleed in utero or oxygen deprivation during the birth process. The common name for this big scientific term, the use of which feels manipulative on the face of it, is cerebral palsy, when brain injury occurs near birth. Children who have survived near-drowning might also have the term static encephalopathy applied to them. Or children with “shaken baby syndrome.”

The “static” part means that the injury the brain sustained as a result of the incident, whatever it was, will not get worse. Whatever areas of the brain were hurt—and this is different for each and every individual with this diagnosis which makes all predictions very fuzzy—will not get more hurt. It does NOT mean the person is stuck in time, forever an infant. Lots of challenges, yes, but not stuck. This characterization is a manipulation in my opinion.

There are myriad proven educational, occupational and physical therapies, and medical interventions that can assist children with this diagnosis to progress and have the opportunity to maximize their full potential. And there are myriad technologies, more each day, to enhance a child’s ability to learn and communicate and affect their world. From what I see, medical technology and human/medical know-how was instead used to cement a foregone conclusion—to literally intervene to stop this child in her tracks—the very thing the physicians say they lamented about her condition.

Brain injury is tricky and recovery can be painfully slow, as any survivor of stroke will tell you. It feels especially slow to those worried about the survivor of the injury, who can lose patience even before the survivor. But the brain is very plastic, most especially in infants and children, and has an uncanny ability to find alternate neural pathways to compensate for the losses the injury may have caused. But nobody had the patience to simply let Ashley show the world who she would be, on her timetable, and on her terms. They didn’t allow her even that inkling of respect. And that is the extreme tragedy of this.

Dr. Diekema, the co-author of Ashley’s case study with Dr. Gunther, is listed as Chair of Seattle Children’s Hospital Institutional Review Board (IRB), whose charge is “Human Subjects Protection.” He was integral to make or break this travesty from going forward at Seattle Children’s. It’s his job to protect this little girl from exploitation, experimentation and harm. I believe he failed her.

High-dose estrogen therapy (to experimentally shorten this young child’s stature) is a catalyst for both breast development and menstruation. The family feared both of these occurrences, according to the published medical study by Drs. Diekema and Gunther, and the parent’s blog. Hence the hospital’s novel treatment to try to alleviate one fear, a growing child, necessitated the further radically invasive treatment of removal of both the breasts and uterus of a 6-year-old (!) to alleviate estrogen’s by-product and the family’s second fear, normal development. Ironically, estrogen also increases weight gain, according to the studies the doctors cite, so they may trade weight for stature, which really won’t solve the “problem” they say they intended to solve for Ashley’s family. Deep vein thrombosis too is a significant risk with estrogen, a condition that also occurs when individuals cannot freely move, as is the case with this child. Bottom line, the estrogen “treatment” and hysterectomy and mastectomy “pre-treatment” increased risks this child already had, subjected her to permanent disfigurement, and removed from her every last thing that one might consider normal about this child—growing and developing.

Ashley’s intellectual capacity appears to have been the deciding factor in moving forward, which is intellectual chauvinism at it’s worst. These doctors should pray they don’t meet up with someone smarter than they. “First, do no harm” is a wonderfully simple standard. All the myriad, speculative justifications these doctors have put forward to create the illusion that Ashley will benefit, don’t hold a candle to do no harm. Since when does possibly uncomfortably large breasts in her future, speculatively imagined since women in the family have a history of them, trump mastectomy to a six-year-old in harm?

If one’s family has a history of obesity in adulthood—should one be offered stapling a child’s stomach or removal of part of the intestine as a “pre-treatment” preventative measure? If heart disease runs in the family—should one be offered “pre-treatment” stents? If a family has a son in this predicament, should surgical testicle removal be offered since use of a wheelchair seat pommel for positioning might prove uncomfortable? Ashley still has her ovaries. Could not these too prove cancerous in the future, God forbid, just as easily as her uterus? The logic of the justifications are so suspect that it’s mind boggling that learned individuals are even putting them forth.

These physicians violated the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research’s number one rule stated in the landmark Belmont Report’s Basic Ethical Principles: “Respect for Persons incorporates at least two ethical convictions: that individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection,” in Ashley’s case, exceptional protection.

SusanJ:

Thank you for commenting.  I am questioning not the diagnosis but the implications of the diagnosis and the extent to which it can truly be deemed appropriate with regard to predicting Ashley’s future.  Static encephalopathy is just another way of referring to cerebral palsy, or some sort of idiopathic brain injury.  People with CP and brain injuries vary widely in their abilities and probably in their interior lives as well, and when someone has severe motor deficits, I simply find it scientifically untenable to make assumptions about their “mental age”.  I also find the concept of “mental age” to be suspect in the first place, as well as the assumption that a person’s brain will never develop beyond a particular state, particularly when the cause of the brain injury is unknown.

As the other commenter mentioned, neural plasticity in humans (particularly children) is well-documented.  And people have managed to awaken from years-long comas and minimally conscious states even when they were assumed unaware and non-communicative prior to a sudden surprise perk-up.  As rare as these sort of occurrences might be, they represent, at the very least, a proof of concept with regard to (a) what we still don’t know about the brain, and (b) that prognoses are not always accurate.  Some might suggest that it is unfair to families and patients to cling to the idea of this sort of outcome, but I’m sure there has to be a logical middle ground as opposed to a simplistic dichotomy between wishful thinking and writing someone off.

I realize that parents need to deal with the here and now and the child they actually have and the realities of that child’s situation, but I also see no reason to assume that there’s an overwhelming historical precedent to suggest that simply having Ashley’s diagnosis means that you will “never develop”.  It might very well be that her skills will always be comparable to those of a very young child, however, this still tells us nothing about what she might be thinking or feeling.  All anyone can do is guess.  And in cases when guessing wrong could result in abuses of power or personhood denial, considerable care is needed to make certain that decisions made are not enacted simply because the person-in-question’s physical helplessness makes it possible and easy.

everlearn:

Thank you for commenting as well; you make some very well-thought-out points.  I agree that the use of the term “static encephalopathy” (as opposed to something more familiar like “cerebral palsy”) is perhaps somewhat manipulative.  It’s a term very few people are likely to have heard in the course of their daily lives, and therefore comes across as sounding far more exotic (and potentially “permanent”) than it actually is.  While I do think that more people would do well to learn medical terminology, I am disturbed by the extent to which some people (mainly in comments I’ve seen in various places around the Web) are acting as if they know all about static encephalopathy and that anyone who dares question the doctors’ and parents’ opinion of Ashley’s prognosis is simply being presumptuous.  Why shouldn’t people be allowed to question parents and doctors, particularly when they make such sweeping claims about the finality of Ashley’s developmental state?  I don’t evaluate claims on the basis of how convinced the people making them seem, or what their credentials are—I evaluate claims on the basis of data and logic.

This, and other big-picture issues pertaining to this case, are the kinds of things that need to be brought out into the open for discussion.  I’ve seen far too much focus on Ashley’s post-modification configuration on both the part of those who agree with the parents’ decision and those who disagree, when that isn’t really the issue that needs the most emphasis.  As I said in the article to which you responded, people without breasts or a uterus are certainly no less valid as people.  However, the question of when and to what extent a person’s bodily autonomy should be compromised on the basis that they might benefit from the procedures applied, is certainly not one with clear-cut answers. 

I do believe it is proper, for instance, for parents to give their children vaccinations, chemotherapy, and other preventative/lifesaving interventions, regardless of the fact that the child might protest these things.  Sometimes it is okay to do something to someone without their permission—and yes, that sometimes extends to operating on them.  Nevertheless, the nature of (and some of the stated justifications for) Ashley’s operations result in a situation that falls outside the kinds of ethical explanatory power that most people today possess, so we are all struggling to determine boundaries—both in this case and in potential future cases. 

Again, thank you for your insightful comments—I wish you and your son the best.

A Clarifying Note (to all):

I will state for the record that the points I made in my essay were not based on a bioconservative stance—hopefully that was obvious.  I actually believe that far too many people are fearful of technology by default, as opposed to seeing it as a potential force to drive positive change and improve the lives of all persons when properly applied.  That said, whenever medical ethics are brought into the spotlight for whatever reason, I think it’s important to give time to a range of diverse views—we’re all seeing different parts of the elephant, so to speak, and can learn from one another. 

I chose to emphasize the disability-relevant issues of the Ashley case because when it comes to emerging technologies, people with disabilities are frequently the earliest adopters and therefore have a vested interest in hashing out the complicated ethical issues as early as possible during the broadening of a given technology’s applications.  Many disabled people have benefitted tremendously from new technologies—ventilators, feeding tubes, augmented communication, mobility aids, experimental biomedical techniques (such as stem cells transplanted into a major artery in order to repair a damaged heart), and I stand by the right of people with disabilities to take full advantage of lifesaving and ability-enhancing procedures and devices. 

I am optimistic that emerging technologies and more inclusive ethical paradigms can, if properly supported, bring about an era of vastly improved quality of life for people everywhere.  However, when applying a new use of technology to a person incapable of expressing consent, the ethical rigor with which the procedure must be evaluated cannot be underestimated.

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