[Paleopsych] Tim Bayne and Neil Levy: Amputees By Choice
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Tim Bayne and Neil Levy: Amputees By Choice: Body Integrity Identity Disorder
and the Ethics of Amputation
Journal of Applied Philosophy, Vol. 22, No. 1, 2005
with an afterword by Wesley J. Smith
abstract
Should surgeons be permitted to amputate healthy limbs if patients request such
operations? We argue that if such patients are experiencing significant
distress as a consequence of the rare psychological disorder named Body
Integrity Identity Disorder (BIID), such operations might be permissible. We
examine rival accounts of the origins of the desire for healthy limb
amputations and argue that none are as plausible as the BIID hypothesis. We
then turn to the moral arguments against such operations, and argue that on the
evidence available, none is compelling. BIID sufferers meet reasonable
standards for rationality and autonomy: so as long as no other effective
treatment for their disorder is available, surgeons ought to be allowed to
accede to their requests.
-----------------------------
In 1997, a Scottish surgeon by the name of Robert Smith was approached by a man
with an unusual request: he wanted his apparently healthy lower left leg
amputated. Although details about the case are sketchy, the would-be amputee
appears to have desired the amputation on the grounds that his left foot wasn’t
part of him--it felt alien. After consultation with psychiatrists, Smith
performed the amputation. Two and a half years later, the patient reported that
his life had been transformed for the better by the operation [1]. A second
patient was also reported as having been satisfied with his amputation [2].
Smith was scheduled to perform further amputations of healthy limbs when the
story broke in the media. Predictably, there was a public outcry, and Smith’s
hospital instructed him to cease performing such operations. At present, no
hospital offers healthy limb amputations. Would-be amputees--or "wannabes", as
they refer to themselves--would appear to number in the thousands. They have
their own websites, and are the subject of a recent documentary [3].
In this paper, we are concerned with two basic questions. First, what would
motivate someone to have an apparently healthy limb amputated? Second, under
what conditions is it reasonable for doctors to accede to such requests? We
believe that the first question can shed significant light on the second,
showing that, on the evidence available today, such amputations may be morally
permissible.
What is It Like to Be a Wannabe?
What motivates someone to desire the amputation of a healthy limb? One
possibility is that wannabes suffer from Body Dysmorphic Disorder (BDD), a
condition in which the individual believes, incorrectly, that a part of their
body is diseased or exceedingly ugly [4]. This belief can be a matter of
intense concern for the individual, and is resistant to evidence against it.
BDD appears to be closely akin to anorexia nervosa, in that both appear to be
monothematic delusions that are sustained by misperceptions of one’s own body
[5]. Perhaps wannabes desire amputation in order to rid themselves of a limb
that they believe to be diseased or ugly.
A second explanation is that wannabes have a sexual attraction to amputees or
to being an amputee [6]. On this account, the desire for amputation would stem
from apotemnophilia, which is a kind of paraphilia--a psychosexual disorder.
Apotemnophiles are sexually attracted to amputees, and sexually excited by the
notion that they might become amputees themselves.
A third explanation is that there is a mismatch between the wannabe’s
experience of their body and the actual structure of their body. On this view
there is a mismatch between their body and their body as they experience
it--what we might call their phenomenal (or subjective) body. On this view,
which is increasingly gaining favour, wannabes suffer from Body Integrity
Identity Disorder (BIID), also known as Amputee Identity Disorder (AID) [7].
The BIID account can be developed in different ways depending on the type of
bodily representation that is thought to be involved. On the one hand, one
could conceive of BIID in terms of a mismatch between the patient’s body and
their body schema. The body schema is a representation of one’s body that is
used in the automatic regulation of posture and movement [8]. It operates
sub-personally and sub-consciously, guiding the parts of one’s body to
successful performance of action. The body schema is a dynamic structure,
providing a moment-by-moment sense of how one’s body parts are articulated.
Mismatches between a person’s body schema and their actual body are not
uncommon. Individuals who lose (or have never had) a limb often experience a
phantom limb: they feel as though the limb is still there, and in some cases
attempt to employ it in order to carry out actions--such as answering the
telephone. Whereas the body schema of individuals with phantom limbs includes
body parts that they lack, other patients have no body schema for body parts
they have. Patients who have undergone deafferentation from the neck down lose
any proprioceptive sense of how their limbs are currently positioned, and rely
on visual cues to control action [9].
Perhaps wannabes also have a body schema that fails to incorporate the full
extent of their bodies. Although we do not want to dismiss this suggestion, the
evidence we have to date weighs against this account. As far as we know,
wannabes do not exhibit any of the impairments in control of movement that one
would expect in a person with a distorted or incomplete body schema. Further,
wannabes who have had the amputation they desire seem, as far as we can tell,
to be content to use a prosthesis. This suggests that the problem they suffer
from is not primarily a conflict between their body and their body schema.
A more plausible possibility is that BIID involves a mismatch between the
wannabe’s body and their body image. One’s body image is a consciously
accessible representation of the general shape and structure of one’s body. The
body image is derived from a number of sources, including visual experience,
proprioceptive experience, and tactile experience. It structures one’s bodily
sensations (aches, pains, tickles, and so on), and forms the basis of one’s
beliefs about oneself [10].
Discrepancies between a person’s body and their body image occur in a wide
range of cases, known as asomatognosias. Asomatognosia can occur as a result of
the loss of proprioception, in post-stroke neglect, and in the context of
depersonalisation [11]. In many of these cases the patient in question has
become delusional and denies either the existence of the affected limb or their
ownership of it. In a condition known as somatoparaphrenia, patients will even
ascribe ownership of their limbs to another person [12].
Other forms of asomatognosia concern only the patient’s perception of their
body and leave the doxastic component of their body image intact. Oliver Sacks
eloquently describes his own experience of this condition:
In that instant, that very first encounter, I knew not my leg. It was utterly
strange, not-mine, unfamiliar. I gazed upon it with absolute non-recognition
[...] The more I gazed at that cylinder of chalk, the more alien and
incomprehensible it appeared to me. I could no longer feel it as mine, as part
of me. It seemed to bear no relation whatever to me. It was absolutely
not-me--and yet, impossibly, it was attached to me--and even more impossibly,
continuous with me [13].
Sacks did not become delusional--he knew that the leg in question was his--but
he no longer experienced it as his own. Perhaps BIID involves a similar form of
non- delusional somatic alienation. If so, then there might be a very real
sense in which the limb in question--or at least, the neuronal representation
of it--is not healthy.
It is also tempting to draw parallels between BIID and the discrepancy between
body image and the person’s actual body that characterizes anorexia nervosa and
bulimia nervosa [14]. Of course, there are also important differences between
these conditions: Whereas the person with anorexia or bulimia fails to (fully)
recognize the discrepancy between her body and her body image, the wannabe is
all too aware of this discrepancy.
None of the three explanations of the desire for amputation that we have
outlined attempts to provide complete models of the phenomenon: the BDD model
does not attempt to explain why wannabes might regard the limb in question as
diseased or ugly; the apotemnophilia model does not attempt to explain why
wannabes might be sexually attracted to a conception of themselves as amputees;
and the BIID model does not attempt to explain why wannabes might fail to
incorporate the limb into their body image. Clearly these models can, at best,
provide only a first step in understanding why someone might become a wannabe.
Nevertheless, even though these models are incomplete, we can make some
progress in evaluating them.
A first point to make is that these models may not be exclusive. It could be
that there are two or three bases for the desire for amputation, with some
patients suffering from BDD, others suffering from a paraphilia, and others
suffering from a form of BIID. Some individuals might even suffer from a
combination of these disorders. Perhaps, for example, the sexual element is
better conceived of as a common, though not inevitable, element of
asomatognosia. Sexuality is, after all, an essential ingredient in most
people’s sense of identity. Elliott reports that at least one wannabe (who is
also a psychologist) characterizes their desire for amputation as indissolubly
a matter of sex and identity [15]. Like Gender Identity Disorder, BIID might be
importantly sexual without ceasing to be essentially concerned with identity.
However, although each of the three models might play some role in accounting
for the desire for healthy limb amputation, we can also ask which model best
fits most wannabes. The initial media stories and a subsequent BBC documentary,
Complete Obsession, identified Robert Smith’s patients as suffering from BDD.
However, there seems good reason to doubt whether any of these individuals
suffered from BDD, strictly speaking. Neither of the two individuals featured
in Complete Obsession appears to find their limbs diseased or ugly. Instead,
they feel in some way alienated from them. Further evidence against the BDD
hypothesis is provided by recent research by Michael First [16]. First
conducted in-depth anonymous interviews with 52 wannabes, nine of whom had
either amputated one of their limbs themselves or had enlisted a surgeon to
amputate it. Only one of the 52 individuals interviewed cited the ugliness of
the limb as a reason for wanting the amputation.
What about the suggestion that the desire for amputation stems from
apotemphilia? First’s study provides limited grounds for thinking that the
desire for amputation might have a sexual basis in some cases. 15% (n = 8) of
First’s interviewees cited feelings of sexual arousal as their primary reason
for desiring amputation, and 52% cited it as their secondary reason. Further,
87% of his subjects reported being sexually attracted to amputees. Additional
support for the apotemenophilia hypothesis stems from the fact that there is a
large overlap between the classes of devotees (acrotomophiles: people sexually
attracted to amputees), pretenders (people who consciously fake a disability)
and wannabes. More than 50% of devotees are also pretenders and wannabes,
suggesting a common cause for all three syndromes [17]. Because of this
overlap, the data researchers have gathered on devotees may be relevant to the
desire for amputation.
Devotees are apparently more sexually attracted to the idea of amputation than
to amputees themselves. Though many have had sexual relations with amputees,
few go on to establish long-term relationships with particular individuals. As
Riddle puts it, for the acrotomophile, ‘No amputee is the right amputee’ [18].
Bruno suggests that this fact is evidence that acrotomophilia essentially
involves projection: the wannabe imagines themselves in place of the amputee.
Acrotomophilia is apotemnophilia displaced, projected onto others. If
apotemnophilia is essentially a body integrity disorder, Bruno seems to think,
it could not be displaced so easily. But it seems just as plausible to
interpret the acrotomophile’s lack of interest in the individual amputee as
evidence that it is a concern with his own body that motivates the devotee.
In any case, although First’s study provides some support for thinking that the
desire for amputation can have a sexual component in some instances, it offers
little support for the paraphilia hypothesis as the best explanation of the
disorder. After all, only 15% of wannabes identified sexual arousal as the
primary motivation for amputation: this leaves 85% unaccounted for.
First’s data provides equivocal support for the third model, on which the
desire for amputation derives from the experience of a gulf between one’s
actual body and one’s subjective or lived body. The leading primary reason
First’s subjects gave for wanting an amputation was to restore them to their
true identity (63%, n = 33). Participants said such things as, "I feel like an
amputee with natural prostheses--they’re my legs, but I want to get rid of
them--they don’t fit my body image", and, "I felt like I was in the wrong body;
that I am only complete with both my arm and leg off on the right side." First
suggests that this data supports the view that most wannabes suffer from BIID,
which he considers akin to Gender Identity Disorder. There is reason for
caution here. For one thing, only 37% (n = 19) of First’s participants said
that the limb in question felt different in some way, and only 13% (n = 7) said
that the limb felt like it was not their own. In addition, we know of no
evidence that wannabes suffer from the kinds of sensory and attentional
impairments--such as neglect--that tend to accompany, and perhaps underlie,
standard forms of asomatognosia. Perhaps the notion of body image that First’s
subjects have in mind is closer to that of the self-image of the person who
wants cosmetic surgery, say, for breast enlargement. She knows that she has
small breasts, but her idealised image of herself is of someone with large
breasts. She does not feel comfortable--at home--in her own body.
Although more research needs to be done about the nature and aetiology of the
desire for amputation of a healthy limb, the foregoing suffices to put us in a
position to make an initial foray into the ethical issues raised by such
requests. We turn now to an examination of three arguments in favour of
performing the requested amputations.
Harm Minimization
The first and perhaps weakest of the three arguments is familiar from other
contexts. Whether wannabes are correct in thinking that their disorder requires
surgery or not, we must recognize that a significant proportion of them will
persist in their desire for amputation, even in the face of repeated refusals,
and will go on to take matters into their own hands. The Internet sites run by
wannabes often discuss relatively painless and safe ways of amputating limbs,
or damaging them sufficiently to ensure that surgeons have no choice but to
amputate. Six of the 52 participants in First’s study had amputated a limb
themselves, utilizing dangerous means including a shotgun, a chainsaw and a
wood chipper. Other patients have turned to incompetent surgeons after
competent doctors refused to treat them. In 1998 a seventy-nine year old man
died of gangrene after paying $10,000 for a black-market amputation [19].
Given that many patients will go ahead with amputations in any case, and risk
extensive injury or death in doing so, it might be argued that surgeons should
accede to the requests, at least of those patients who they (or a competent
authority) judge are likely to take matters into their own hands. At least so
long as no other treatments are available, surgery might be the least of all
evils. This raises familiar practical and ethical issues to do with
participation in a practice of which we might disapprove and our inability to
confidently distinguish those patients for whom the desire for an amputation
might be transient from those who will persist in their demand. Because these
issues are familiar and have been extensively treated elsewhere, we will not
dwell on them here.
Autonomy
It is well-entrenched maxim of medical ethics that informed, autonomous desires
ought to be given serious weight. An individual’s conception of his or her good
should be respected in medical decision-making contexts. Where a wannabe has a
long-standing and informed request for amputation, it therefore seems
permissible for a surgeon to act on this request.
As an analogy, consider the refusal of life-saving treatment on religious
grounds. Although such decisions might result in the death of the patient, they
are accorded significant weight in the context of medical decision-making. If
we ignore the informed and repeated wishes of the Jehovah’s Witness who refuses
the blood-transfusion needed to save her life, we fail to respect her as an
autonomous moral agent who is living her life according to her conception of
the good. If it is permissible (or even obligatory) to respect informed and
autonomous rejections of life saving treatment, it is also permissible to act
on informed and autonomous requests for the amputation of a healthy limb.
Of course, the parallel between the Jehovah’s Witness who refuses life-saving
treatment and the wannabe who requests the amputation of a limb is not exact:
the first case involves an omission but the second case involves an action.
This is a difference, but whether or not it is morally relevant depends on what
one makes of the act/ omission distinction. We are doubtful that the
distinction can do much moral work in this context, but to make the case for
this position would take us too far away from our present concerns.
We shall consider two objections to the argument from autonomy. The first is
that wannabes are not fully rational, and that therefore their requests should
not be regarded as autonomous. As Arthur Caplan put it: ‘It’s absolute, utter
lunacy to go along with a request to maim somebody’, because there is a real
question whether sufferers ‘are competent to make a decision when they’re
running around saying, "Chop my leg off"’ [20].
It is clear that some individuals who might request the amputation of healthy
limbs are not rational. Neither the schizophrenic patient who believes that God
is telling her to amputate her leg, nor the patient with somatoparaphrenia who
attempts to throw his leg out of bed because he thinks it is not his own, is
rational. To what extent wannabes are also incompetent depends on what kinds of
wannabes they are.
There is a prima facie case to be made for thinking that wannabes suffering
from BDD are not competent to request surgery. There are grounds for regarding
BDD as a monothematic delusion, akin to, say, Capgras’ delusion (the delusion
that a close relative has been replaced by an impostor) or Cotard’s delusion
(the delusion that one is dead). After all, individuals with BDD appear to
satisfy the DSM definition of a delusion: they have beliefs that are firmly
sustained despite what almost everyone else believes and despite
incontrovertible and obvious proof or evidence to the contrary [21].
Of course, the circumscribed and monothematic nature of this delusion
problematizes the charge of incompetence. These patients are not globally
irrational. One might argue that despite the fact that their beliefs about the
affected limb have been arrived at irrationally, their deliberations concerning
what to do in the light of these beliefs are rational, and hence ought to be
respected. One might draw a parallel between the position of the person who
requests amputation as a result of BDD and the person who refuses life-saving
treatment on the grounds of strange religious beliefs. One might argue that in
both cases the agent has arrived at their beliefs irrationally, but they may
have chosen a reasonable course of action given their beliefs. And--so the
argument continues--one might argue that competence is undermined only by
unreasonable practical reasoning, not by impaired belief-fixation or
theoretical reasoning. There is obviously much more that could be said about
whether or not individuals with BDD are competent to request surgery, but we
will not pursue these issues, for-- as we have already pointed out--First’s
data suggest that few wannabes are motivated by the belief that their healthy
limb is diseased or exceedingly ugly. Instead, most wannabes appear to have
some form of BIID: they appear to be motivated to achieve a fit between their
body and their body image. Are wannabes with BIID delusional?
We have already suggested that they are not. Although wannabes seem not to
experience parts of their body as their own, they do not go on to form the
corresponding belief that it is alien. The wannabe with BIID clearly recognizes
that the leg is hers: she does not identify it as someone else’s leg, nor does
she attempt to throw it out of bed, in the way that patients with
somatoparaphrenia sometimes do.
One might argue that the wannabe’s response to her somatic alienation
demonstrates a form of irrationality. One might think that the rational
response to a conflict between one’s subjective experience of embodiment and
one’s body would be to change one’s experience of embodiment rather than change
the structure of one’s body. The claim is correct but irrelevant: the wannabe’s
desire for amputation appears to be born out of an inability to change the way
in which she experiences her body. Of course, it may be that some wannabes
would rather change their actual body to fit their experienced body than
vice-versa. Is someone with such a desire set competent to make a request for
amputation? They certainly challenge our notions of autonomy and competency,
but it is far from obvious that they ought to be regarded as incompetent. It is
important to bear in mind that they have spent many years--perhaps even
decades--with a non-standard sense of embodiment. (Most wannabes report having
had a feeling of somatic alienation since childhood.) Their experience of
themselves has been built around this sense, and to require them to change it
is, to some extent, to require them to change who they are. The case is not
dissimilar to a situation in which an elderly person, blind from an early age,
is suddenly presented with the opportunity to regain her sight. The decision to
decline such an offer can be understood as an exercise of rational agency.
A useful angle on the question of whether the requests of wannabes could be
competent is provided by contrasting wannabes with people who desire cosmetic
surgery (where the surgery is not for the treatment of disfigurement). While
one can certainly argue on feminist grounds that such people are not fully
competent, these arguments have left many people unmoved [22]. We allow
individuals to mould their body to an idealized body type, even when we
recognize that this body image has been formed under the pressure of
non-rational considerations, such as advertising, gender-norms, and the like.
If this holds for the individual seeking cosmetic surgery, what reason is there
to resist a parallel line of argument for those seeking amputation? Of course,
the latter individual is seeking to mould their body to an ideal that few of us
aspire to, and one that has been formed under conditions that are far from
perfect, but why should these facts cut any moral ice? In fact, one might think
that the desire for cosmetic surgery (and gender-reassignment surgery) is more
problematic than the desire for amputation. Men who believe that they are
really women ‘trapped in a man’s body’-- and the overwhelming majority of
transsexuals are male-to-female--typically reinforce a stereotyped view of
femininity, and contribute, however unwittingly and obliquely, to gender
inequality [23]. The essential woman they seek to be is weak and helpless,
obsessed by appearance, and so on [24]. There are related feminist grounds (and
not only feminist grounds) on which to criticize cosmetic surgery: it
reinforces a very unfortunate emphasis on appearance over substance. It is hard
to see that the desire for amputation could be criticized upon grounds of these
kinds, since it goes against the grain of our culturally endorsed ideals of the
body.
A second objection to the argument from autonomy is that the wannabe is not in
a position to give informed consent to the surgery, for he or she does not--and
cannot--know what it is like to be an amputee without first becoming an
amputee. We think that this objection is weak. First, it is not at all obvious
that the wannabe cannot know what it will be like to be an amputee without
becoming an amputee. Arguably, there is a sense in which the wannabe already
knows that it is like to be an amputee. We might also note that at least some
wannabes pretend to be amputees-- they spend their weekends in a wheelchair,
and so on. To some degree, it seems that a wannabe can know what it is like to
be an amputee.
But a more important point to be made here is that the objection appears to set
the bar for autonomy too high [25]. Autonomy demands only that one have an
adequate understanding of the likely consequences of an action, and one can
have a reasonable understanding of what life as an amputee would be like
without first becoming an amputee. Arguably, the wannabe is in a better
position to appreciate the consequences of the desired surgery than is the
person who seeks cosmetic surgery, the would-be surrogate mother, or the person
desiring gender reassignment surgery.
Therapy
A third argument in favour of operating appeals to the therapeutic effects
promised by such operations. The argument rests on four premises: (i) wannabes
endure serious suffering as a result of their condition; (ii) amputation
will--or is likely to--secure relief from this suffering; (iii) this relief
cannot be secured by less drastic means;
(iv) securing relief from this suffering is worth the cost of amputation. This
argument parallels the justification for conventional amputations. There is
some reason to endorse (i). First, the lengths to which wannabes go in an
effort to amputate their own limbs suggest that their desires are strong and
unrelenting. Even when wannabes do not take active steps to secure an
amputation, their feeling of bodily alienation seems to cause severe disruption
to their everyday lives. 44% of First’s subjects reported that their desire
interfered with social functioning, occupational functioning, or leisure
activities.
Some writers suggest that (ii) is problematic. Bruno and Riddle claim that the
desire for amputation has its origins in attention-seeking sparked by the
deprivation of parental love [26]. On this hypothesis, though it is possible
that satisfying their wish for an amputation might give the wannabe the
attention and kindness they seek, it is unlikely. Though amputees are treated
with a certain degree of solicitude in many situations, the daily frustrations
and difficulties caused by their condition almost certainly more than
overbalance this care. Moreover, it is quite likely that the wannabe will not
be satisfied with the solicitude of strangers. Instead she will seek ongoing
commitment from particular individuals, and there is little reason to think
that she is more likely to get this than are non-amputees. Finally, it might be
that even the love of particular others will not suffice: it may be that
literally nothing can stand in for the love of which she was deprived as a
child. Bruno suggests that psychotherapy is the appropriate response to the
disorder, not surgery. The patient needs to develop insight into the real
source of her problems before she can solve them.
Bruno’s proposal is empirically testable: we can evaluate whether the desire
for amputation responds to psychotherapy, and whether amputation simply leads
to the displacement of the patient’s symptoms. What little data we have to date
suggests that Bruno is wrong on both counts. We know of no systematic study of
the effects of psychotherapy on the desire for amputation, but First’s study
suggests that it is not particularly effective. Of the 52 individuals he
interviewed, 18 had told their psychotherapist about their desire for
amputation, and none reported a reduction in the intensity of the desire
following psychotherapy.
On the other hand, on the scant evidence available, wannabes who succeed in
procuring an amputation seem to experience a significant and lasting increase
in wellbeing. Both of Robert Smith’s patients were reported as having been very
happy with their operations, and the nine subjects in First’s study who had had
an amputation also expressed satisfaction with the results [27]. As far as we
can tell, such individuals do not develop the desire for additional amputations
(in contrast to individuals who have had cosmetic surgery). Nor, as far as we
know, do such patients develop (unwanted) phantom limbs. Of course, it may be
that the sample to which researchers have had access is self-selecting:
adherents of the BIID account are motivated to come forward to adduce evidence
in favour of their theory, while those who have had more unhappy experiences
simply lose interest in the debate, or are too depressed to motivate themselves
to take any further part. In any case, the sample sizes are too small to be
statistically significant. Unfortunately, it is hard to see how it will be
possible to collect sufficient data of the required sort. We can of course
follow the fortunes of those who have arranged non-medical amputations for
themselves, but a controlled study would presumably require medical
amputations, and ethical approval for performing such operations is unlikely to
be forthcoming without this very data [28].
We turn now to (iii): can the wannabe secure relief from their suffering by
less drastic means than amputation? Again, the jury is out on this. First’s
study suggests that psychotherapy is not a particularly effective form of
treatment, but psychotherapy is not the only alternative to amputation. Some
form of cognitive behavioural therapy might prove effective, perhaps in
combination with psychotropic drugs. But it might also be that some wannabes
cannot be helped by available drugs or talking therapy whatever the aetiology
of the disorder. After all, the phantom limb phenomenon is resistant to these
forms of treatment. For at least some patients, there may be no treatment
available other than amputation.
Finally, we turn to (iv): is securing relief from this suffering worth the cost
of amputation? This, of course, will depend on the degree of suffering in
question and the costs of amputation. We have already noted that there is
reason to think that wannabes often experience significant misery from their
condition. But what should we say about the costs of amputation? These, of
course, will vary from case to case, depending on the financial and social
circumstances of the individual, and the nature of the amputation itself. The
costs might be offset by the benefits of amputation in some cases but not in
others. It is interesting to note that of the two would-be amputees featured in
the Complete Obsession documentary, the person seeking amputation of a single
leg was given psychiatric approval, while the person seeking to have both her
legs amputated was denied psychiatric approval. And of course the costs are not
always borne just by the patient; they are often also borne by the patient’s
family and by society as a whole.
There is ample room here for false consciousness. On the one hand, one can
argue that wannabes have an overly rosy image of what life as an amputee
involves. And certainly those wannabes who have become amputees have a
motivation for thinking that their life is better than it really is. On the
other hand, one could also argue that those of us who are able bodied have an
overly pessimistic image of the lives of the disabled. As able-bodied
individuals, we might be tempted to dwell on the harm that accompanies
amputation and minimize what is gained by way of identification. Perhaps we are
tempted to think that the effects of the surgery are worse than they are.
Repugnance
We believe that the arguments canvassed above establish a prima facie case for
thinking that wannabes should have access to amputation, at least in those
instances in which they suffer from BIID. However, we recognize that many
people will continue to find the idea of voluntary amputation of a healthy limb
objectionable, even when they acknowledge the force of these arguments. What
motivates such reactions?
We suspect that much of this hostility derives from the sense of repugnance
that is evoked by the idea that a person might wish to rid themselves of an
apparently healthy limb. Dennis Canavan, the Scottish member of parliament who
campaigned to prevent Robert Smith from carrying out such operations was quoted
as saying: "The whole thing is repugnant and legislation needs to be brought in
now to outlaw this" [29]. Mr Canavan is surely not alone in having such a
reaction. Wannabes evoke an affective response not dissimilar to that evoked by
the prospect of kidney sales, bestiality, or various forms of genetic
engineering. Even when a limb is severely diseased and must be removed in order
to save the patient’s life, the thought of amputation strikes many as
distasteful at best.
Although they should not be dismissed, we think that such responses should be
treated with a great deal of caution. A large number of morally benign
practices-- such as masturbation, inter-racial marriage, burial (and cremation)
of the dead, organ selling, artificial insemination, tattooing and body
piercing--have the ability to elicit disgust responses. Disgust responses can
alert us to the possibility that the practices in question might be morally
problematic, but they do not seem to be reliable indicators of moral
transgression [30].
Indirect Effects
We have explored three arguments for allowing self-demand amputation of healthy
limbs: the argument from harm minimization, the autonomy argument and the
therapeutic argument. We have suggested that these arguments have some force.
But even if we are right about that, it does not follow that we ought to allow
self-demand amputation of healthy limbs. One might hold that although these
arguments are strong, their force is outweighed by reasons for not allowing
such surgery.
In our view, the strongest such argument concerns the possible effects of
legitimising BIID as a disorder. The worry is that giving official sanction to
a diagnosis of BIID makes it available as a possible identity for people. To
use Ian Hacking’s term, psychiatric categories have a "looping" effect: once in
play, people use them to construct their identities, and this in turn
reinforces their reality as medical conditions [31]. Arguably, something like
this has occurred in the case of Dissociative Identity Disorder (formerly
multiple personality disorder): the explosion of diagnoses of DID might be due
in part to the fact that people regard DID as a culturally sanctioned disorder.
The very awareness of a disorder can contribute to its proliferation.
Could a similar effect occur for BIID? Is it likely that the inclusion of the
disorder in the forthcoming DSM-V will generate an explosion of cases on the
order of that seen in the study of dissociation? Perhaps, but there is reason
to think that such fears are unwarranted. The desire for amputation of a
healthy limb is at odds with current conceptions of the ideal body image. The
preference for bodily integrity is deep-seated in normal human beings, and
advertising does much to reinforce such norms. We therefore think it unlikely
that the desire for amputation will proliferate.
Conclusion
In a world in which many are born without limbs, or lose their limbs to
poisons, landmines, and other acts of man and God, it might seem obscene to
legitimise the desire for the amputation of healthy limbs. But we have argued
that, in the case of at least some wannabes, the limb in question is not as
healthy as it might appear: in an important sense, a limb that is not
experienced as one’s own is not in fact one’s own. Disorders of
depersonalisation are invisible to the outside world: they are not observable
from the third-person perspective in the way that most other disorders are. But
the fact that they are inaccessible should not lead us to dismiss the suffering
they might cause. Whether amputation is an appropriate response to this
suffering is a difficult question, but we believe that in some cases it might
be [32].
Tim Bayne Department of Philosophy Macquarie University Sydney, NSW 2109
Australia tbayne at scmp.mq.edu.au
Neil Levy Centre for Applied Philosophy and Public Ethics Department of
Philosophy University of Melbourne Parkville Vic 3010 Australia
nllevy at unimelb.edu.au
NOTES
[1] K. Scott (2000) Voluntary amputee ran disability site. The Guardian,
February 7.
[2] G. Furth and R. Smith (2002) Amputee Identity Disorder: Information,
Questions, Answers, and Recommendations about Self-Demand Amputation
(Bloomington, IN. 1st Books).
[3] M. Gilbert (2003) Whole U.S.A.
[4] K. Phillips (1996) The Broken Mirror: Understanding and Treating Body
Dysmorphic Disorder (Oxford, Oxford University Press).
[5] D. M. Garner (2002) Body image and anorexia nervosa in T. F. Cash & T.
Pruzinsky (eds) Body Image: A Handbook of Theory, Research, and Clinical
Practice (New York, The Guilford Press).
[6] J. Money, R. Jobaris, and G. Furth (1977) Apotemnophilia: Two cases of
self-demand amputation as paraphilia, The Journal of Sex Research, 13, 2,
115-125.
[7] Furth & Smith op. cit.
[8] The term ‘body schema’ is used in different ways by different authors. We
are following Shaun Gallagher’s usage. See S. Gallagher (1995) Body schema and
intentionality in J. Bermúdez, N. Eilan and J. Marcel (eds) The Body and the
Self. (Cambridge MA, M.I.T. Press) pp. 225-44 and S. Gallagher (2001)
Dimensions of embodiment: Body image and body schema in medical contexts in S.
K. Toombs (ed) Handbook of Phenomenology and Medicine (Dordrecht, Kluwer
Academic Publishers) pp. 147-75.
[9] S. Gallagher, and J. Cole 1995 Body schema and body image in a deafferented
subject, Journal of Mind and Behavior, 16, 369-90.
[10] The term ‘body image’ is also used in different ways by different authors.
Again, we follow Shaun Gallagher’s usage of the term. See reference [8].
[11] T. E. Feinberg, L. D. Haber, and N. E. Leeds (1990) Verbal asomatognosia,
Neurology, 40, 1391-4; J. A. M. Frederiks (1985) Disorders of the body schema.
In Clinical Neuropsychology in J. A. M. Frederiks (ed) Handbook of Clinical
Neurology, rev. Series, No. 1 (Amsterdam, Elsevier); M. Sierra and G. E.
Berrios (2001) The phenomenological stability of depersonalization: Comparing
the old with the new, The Journal of Nervous and Mental Disorders, 189,
629-636.
[12] An account of such a case is described in O. Sacks (1985) The man who fell
out of bed, in The Man who Mistook his Wife for a Hat (New York, Touchstone).
[13] O. Sacks (1991) A Leg to Stand On (London, Picador).
[14] R. M. Gardner and C. Moncrieff (1988) Body image distortion in anorexics
as a non-sensory phenomenon: A signal detection approach, Journal of Clinical
Psychology, 44, 101-107 and T. F. Cash and T. A. Brown (1987) Body image in
anorexia nervosa and bulimia nervosa: A Review of the literature, Behavior
Modification, 11, 487-521.
[15] C. Elliott (2003) Better Than Well: American Medicine Meets the American
Dream (New York, W.W. Norton & Company).
[16] M. B. First (unpublished) Desire for amputation of a limb: Paraphilia,
psychosis, or a new type of identity disorder? Submitted.
[17] R. Bruno (1997) Devotees, pretenders and wannabes: Two cases of factitious
disability disorder, Journal of Sexuality and Disability, 15, 243-260.
[18] G. C. Riddle (1988) Amputees and devotees: Made for each other? ( New
York, Irvington Publishers).
[19] C. E. Elliott (2000) A new way to be mad, The Atlantic Monthly, 286, 6,
December.
[20] Quoted in R. Dotinga (2000) Out on a limb, Salon, August 29, 1.
[21] American Psychiatric Association (2000) Diagnostic and Statistical Manual
of Mental Disorders, Text Revision. Fourth Edition (Washington D.C., American
Psychiatric Association).
[22] For a feminist argument against the permissibility of cosmetic surgery see
K. P. Morgan (1991) Women and the knife: cosmetic surgery and the colonization
of women’s bodies, Hypatia 6, 3, 25-53.
[23] H. Bower (2001) The gender identity disorder in the DSM-IV classification:
a critical evaluation, Australian and New Zealand Journal of Psychiatry, 35,
1-8.
[24] M. Garber (1993) Vested Interests: Cross-Dressing & Cultural Anxiety
(London, Penguin).
[25] See J. Oakley (1992) Altruistic surrogacy and informed consent, Bioethics,
6, 4, 269-287.
[26] Bruno op. cit. and Riddle op. cit.
[27] See also Elliott (2000) and (2003) op. cit. and F. Horn (2003) A life for
a limb: body integrity identity disorder, Social Work Today, Feb 24.
[28] R. Smithand and K. Fisher (2003) Healthy limb amputation: ethical and
legal aspects (letter), Clinical Medicine, 3, 2, March/April, 188.
[29] Quoted in Dotinga op. cit.
[30] See J. R. Richards (1996) Nefarious goings on, The Journal of Medicine and
Philosophy, 21, 375-416.
[31] I. Hacking (1995) Rewriting the Soul: Multiple Personality and the
Sciences of Memory (Princeton, Princeton University Press).
[32] We are very grateful to Shaun Gallagher, Jonathan Cole, Michael First and
an anonymous reviewer for their very useful comments on a previous version of
this paper. We also thank Suzy Bliss for her valuable help.
Wesley J. Smith: Should Doctors Be Allowed To Amputate Healthy Limbs?
The Weekly Newsletter of the Center for Bioethics and Culture Network
http://www.cbc-network.org/enewsletter/index_7_13_05.htm#article1
If you want to see why Western culture is
going badly off the rails, just read the drivel that passes for
learned discourse in many of our professional journals. The most
recent example is Amputees by Choice: Body Integrity Identity Disorder
and the Ethics of Amputation, published in the current issue of the
Journal of Applied Philosophy (Vol. 22, No 1, 2005).
The question posed by the authors, Tim Bayne and Neil Levy, both
Australian philosophy professors, is whether physicians should be
permitted to amputate a patients healthy limb because the patient is
obsessed with becoming an amputee, an apparently newly discovered
mental disorder that has been given the name Body Integrity Identity
Disorder (BIID).
For people of common sense, the answer is obvious: NO! First, who but
a severely mentally disturbed person would want a healthy leg, arm,
hand, or food cut off? Such people need treatment, not amputation.
Second, physicians are duty bound to do no harm, that is, they should
refuse to provide harmful medical services to patientsno matter how
earnestly requested. (Thus, if I were convinced that my appendix was
actually a cancerous tumor, that would not justify my doctor
acquiescing to my request for an appendectomy.) Finally, once the limb
is gone, it is gone for good. Acceding to a request to be mutilated
would amount to abandoning the patient.
But according to Bayne and Levy, and a minority of other voices in
bioethics and medicine, the need to respect personal autonomy is so
near-absolute that it should even permit doctors to cut off the
healthy limbs of amputee wannabes. After all, the authors write, we
allow individuals to mould their body to an idealized body type in
plastic surgerya desire that is more problematic than the desire for
amputation since cosmetic surgery reinforces a very unfortunate
emphasis on appearance over substance. (Emphasis within the text.)
Moreover, the authors claim in full post modernist mode, just because
a limb is biologically healthy, does not mean that the leg is real.
Indeed, they argue, a limb that is not experienced as ones own is not
in fact ones own.
That this kind of article is published in a respectable philosophical
journal tells us how very radical and pathologically non judgmental
the bioethics movement is becoming. And lest you believe that such
advocacy could never reach the clinical setting: Think again. Such
surgeries have already been performed in the United Kingdom with no
adverse professional consequence to the amputating physicians.
Even more worrying, the current trends in American jurisprudence could
one day legalize amputation as treatment for BIID. For example, in
1999, the Montana Supreme Court invalidated a law that required
abortions to be performed in hospitals. But rather than limit the
decision to that issue, the 6-2 majority opinion in James H.
Armstrong, M.D. v. The State of Montana, imposed a radical and
audacious medical ethic on the people of Montana, ruling: The Montana
Constitution broadly guarantees each individual the right to make
medical judgments affecting her or his bodily integrity and health in
partnership with a chosen health care provider free from government
interference.
If indeed almost anything goes medically in Montanaso long as a
patient wants it and a health care professional is willing to provide
itthen it would seem that a physician could legally amputate a
patients healthy limbs upon request to satisfy a neurotic BIID
obsession.
Award winning author Wesley J. Smith is a senior fellow at the
Discovery Institute and a special consultant for the Center for
Bioethics and Culture Network.
Stem Cell News, Illinois to fund embryonic stem cell research:
Illinois to pay 10 million towards stem
cell research: Although the monies are relatively insignificant,
Illinois has now joined 3 other states in funding embryonic stem cell
research, but in this case, without the consent of the state
legislature. Governor Rod Blagojevich by executive order along with
Comptroller Dan Hynes included an amorphous line item in the state
budget for the Illinois Department of Public Health called "for
scientific research" which makes no clear statement about stem cells.
Patty Schuh, spokeswoman for Senate Minority Leader Frank Watson said
"What they did was they snuck $10 million into a budget without being
up-front with the public." Robert Gilligan of the Catholic Conference
of Illinois also said, "I think it's shameful. I think it's a disgrace
that, on July 12, when the Legislature is not in session, he finds $10
million dollars to partially fund something that's morally
objectionable to many people." Some suggest it is mostly a political
gesture considering it is only a fraction of the proposed monies being
spent by the other 3 states, California, New Jersey, and Connecticut.
CBC's Vision and Mission:
CBC's vision is to equip people to
face the challenges of the 21st century, defend the dignity of
humankind, and embrace ethical biotechnology for the human good. Our
mission is defend human dignity as our societies face issues regarding
the taking, making, and faking of human life. How do we accomplish
this? We offer opportunities via events like the recent [14]Prop71
roundtable and the [15]Techno Sapiens process to engage people's
hearts and minds to think seriously and soberly about the issues that
will come to dominate the 21st Century. From this newsletter you can
see that even now a crucial debate is taking place over the fate and
status of the embryo that has far reaching consequences. The US has an
opportunity within it's grasp to make a clear statement about ethical
research and CBC is part of informing that statement and giving clear
guidance within the debate. And how can CBC put on these events and
help inform the debates? Simply, it is through you and your support
that we can carry out our mission. [16]download the CBC brochure
References
14. http://www.cbc-network.org/redesigned/event_signup.php
15. http://www.cbc-network.org/redesigned/event_display.php?id=118
16. http://www.cbc-network.org/pdfs/cbcbrochure.pdf
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