Producing Identity: Elective Amputation and Disability

[edit] Original Article

You may view the original article on SCAN or view it on our site

Author: Dosanjh Kaur, Harminder Editor: Nikki Sullivan

Scan Journal vol 1 number 3 november 2004

[edit] Abstract/Overview

[edit] Comments/Analysis

" When first writing about the issue I wondered if self-demand amputation could be read within a paradigm of mutilation and self-harm. However, I was frustrated in this attempt by the self-demand narratives I encountered. Unexpectedly, the desire for amputation was framed as an "identity disorder", thus referring to the language and arguments of the trans (gender) debate. "

It is far too easy to make assumptions about BIID and any conclusions drawn from these assumptions are often erroneous. We are glad that the author "dug" some more and came to realise the issues closely related to body image.

"However, on the other hand the condition itself, as well as the way it has been framed, presents a conceptual knot. How can "normal" limbs be extraneous to the body? Are lived body boundaries different to anatomical boundaries? "

Considering that BIID is not solely about amputation, the second question loses some its edge, yet, the first question remains valid (with some adaptation), and is perhaps the key block many people have in the way of accepting BIID as a "valid" condition.

"Can surgery produce identity? Furthermore, is disability an identity? "

There are many in the disability group that will swear that there are enough similarities between the different disability groups, common experiences, common stories, that all this creates a culture. This is why terms such as "Disability Culture" are around, and accepted. Surgery itself probably can't produce identity, but having the desired (nay, required) body image is a direct result of surgery.

"The idea that someone might elect to alter their body to "disable it", and for medicine to be complicit in this is difficult to grasp"

It is only difficult to grasp when viewed from the perspective of the medical model of "disabilities". Perhaps we would be better served looking at it from the perspective of requiring to acquire an impairment (which may, or may not, be a disability). As for medecine's complicity, again, it would only be a problem if we accept that acquiring the impairment is a reduction of the ability to function (or an increased disability), in other words a negative. When in fact, BIID itself reduces one's ability to function in public and eliminating or drastically reducing the BIID symptoms by removing a limb or providing a spinal cord transection is a relatively minor negative.

"The patients seen by Smith had travelled as far as America and Germany, and it was reported that if they did not have access to surgery, there was a risk that their despair would cause them to seek backstreet amputations or intentional accidents that might lead to amputation. "

This is nothing new. People have sought, and received, surgery from backstreet surgeons (and some have died as a result). Despite the inherent risks, BIID sufferers are still looking at this as a viable option. Self-injury, just as risky, is also something used on a regular basis.

"Originally these patients were diagnosed in terms of existing conditions such as Munchausen's syndrome and Body Dysmorphic Disorder (BDD), or in terms of a paraphilia such as apotemnophilia (amputation love) and ameliotasis (attraction to the absence of a limb). These terms have been rejected and this is reflected in the book written on the subject by Robert Smith and one of his clients Gregg Furth. "

It is good that the terminology is changing, as the experience of BIID is quite different in many respects from Munchausen or BDD, and is also not sexually oriented as a primary motivating factor for the majority of people who have BIID.

Not only Dr. Smith and the late Gregg Furth have looked at changing the terminology, Dr. First also suggested the currently preferred term of Body Integrity Identity Disorder

"The re-framing of the "disorder" from a BDD, or a sexual fetish, to an identity disorder is reflected in the language people use in their narratives, using phrases such as "I'm in the wrong body""

Is the re-framing of the disorder reflected in the language, or is it rather a change done to more accurately reflect what the condition is, as demonstrated by the language BIID sufferers use? We posit that the language provided evidence that led to changing the thinking on how the condition should be classified, rather than the other way around, as implied by the author's statement.

"In relation to "Amputee Identity Disorder", the participants (surgeon included) appear to be seeking to change and/or fix identity by intervening in the "materiality" of the body. Yet it is not clear what this materiality is, or whether identity can be bestowed by a surgeon. "

The surgeon is not bestowing identity. The surgeon merely aligns the body to fit with the body image of the BIID sufferer.

"Within medicine there is an insistent forgetting that medical charts, drawings and other discourses produce anatomy, and that these drawings are, as Jordanova (1989) argues, cultural artefacts. The medical body is an inanimate thing, an object, not a subject. The relevance of Shildrick's arguments in this context is that in the medical model of the body, body boundaries are not affective, but anatomical and hence can be articulated surgically. However, feminist philosophers have drawn attention to various disciplines, notably psychoanalysis and phenomenology of the body, that contest the idea that "the body" and hence body boundaries, are purely anatomical entities. "

One must further points out the difference between the medical model of disabilities and the social model of disabilities, which shifts the perception of disabilities further away from what the medical community (in general) seems to rely on.

"One of the key icons in the phenomenological debate on embodiment is intriguingly, the phantom limb. The phantom limb is a phenomenon that has been frequently observed in subjects after a limb has been (involuntarily) amputated. "

Yet, few people "realised wannabes", people who acquired a limb amputation voluntarily, report being plagued with phantom limb pain/perception.

"The material outlined in this section suggests that although on the surface we might view the phenomenon of self-demand amputation as surprising, the idea that the body on the anatomical chart defines the boundaries of the subject is illusory. "

This is an important concept, worth keeping in mind.

"This raises the question what happens after surgery? Are the feelings displaced onto other body parts, or do the individuals achieve the relation to their bodies they require? "

Anecdotal evidence suggests that people stop needing further amputations once they have reached the body image originaly required.

"The narratives given in the book Amputee Identity Disorder about life after surgery are, perhaps surprisingly, narratives of the "happy ever after". The information about people after surgery emphasises that people are now adjusted, calm, happy and live full, productive working lives. [...] There is a disturbing lack of detail in these cases, for example after surgery is there a desire for further amputations? Do self-demand subjects suffer from a phantom limb and does this haunt them and their attempts to articulate their body boundaries surgically? Have the person's feelings of what it is to be an "amputee" changed or altered after surgery?"

There is indeed a lack of information, because nobody conducted a systematic study of post-elective impairment in people. This is a major failing of the medical community working on BIID. One would think that doing follow-up with those individuals we know to have acheived their ideal body image through elective surgery or self-injury would be one of the first stops in studying the topic. However, it has not been done. This may be a reflection of the medical bias against disabilities. If the medical community cannot accept that quality of life after an impairment is higher than before, they aren't likely to set out to conduct a study that would prove them wrong.

However, anecdotal evidence (gathered from personal communications with "realised wannabes", blog entries and BIID related discussion forums) show that people do not require further amputation, and that they generally do not suffer from phantom limbs.

"[...about medical model vs social model...] Although the idea of "impairment" retains the notion that something is "wrong" or different about the body, the impairment/disability binary, which underpins the social model, has undoubtedly been experienced as a breakthrough by disabled people. While theorists may seek to take apart this binary in the same way that Butler has dismantled the sex/gender structure, they may also wish to reiterate it strategically because of its potential to challenge dominant preconceptions in non-disabled discourse. "

There is now an emerging discourse talking about "Functional Diversity", rather than impairment. But we feel the social model is still really important, as it has not sunk in to the medical community yet, and such a shift in thinking is of the utmost importance.

"Self-demand amputation has the potential to mark the difference between impairment and disability, in that people claim a disabled identity, prior to gaining an impairment. "

This is correct, and a succinct way to phrase it. It is worth noting that many in the disability community deny that it is possible to identify with the disability identity until/unless one has the impairment. Yet, we posit that our experience with BIID gives us a real insight on the disability experience. It would be arrogant of the 'disability community' to think that only physical impairements are disabling, and just as a (unvolutary) paraplegic experiences the anguish of knowing they'll never walk again, I suffer the anguish of knowing I'm unlikely to ever be paralysed. It is the same emotion, focused on a slightly different fact. The experience of disability, in that instance, is the same.

"As well as wondering what it means to claim this very specific form of disability as an identity, there are many particularities to consider: do people with non-elective amputations consider themselves to have changed identity radically following surgery? In framing this desire as an "identity disorder" who is assuming agency over self-definition? "

Is identity leading the need for body image, or is identy a result of body image?

"Is there such a thing as an inauthentic disability? Should elective disabilities be received differently?"

Dr. Bruno would lead us to believe there is indeed such a thing as factitious disabilities. But we don't think much of Dr. Bruno. As for elective disabilities being received differently, we think that by the very fact that the physical impairment was sought, a difference in "disability experience" results and is likely to change people's perceptions.

"What is clear is that these people are distressed, and subject themselves to mutilation, painful procedures and possible death to find a way of being in their bodies that they can live with. They also appear to be seeking out ways of being in society that many disability theorists may want to contest. However, it should be noted that self-demand subjects also appear to challenge deeply embedded ideas that disability is undesirable."

We do indeed challenge that idea. And we are indeed distressed. And death is not such a bad outcome, when considering the decades of suffering.

" The literature vividly communicates the idea of peril, of the damage that can be done to someone's identity, self-esteem, feelings of worth, and their sense of self. "

But then, other accounts from people with disabilities encountering disability rights activists for the first time relate how much of a confidence boost, how empowering and how good it feels to finally be able to share these experiences, and the sense of self solidifies once they realise they have access to an entire community.

"The self-demand subject appears to crave that "disabled" identity and the "perceived" attention, notwithstanding that this might be unwanted, and thought of as infantilising, by disabled activists. "

We not not crave attention. We do not wish an impairment because of the attention it would gain us. In fact, we wrote an Opinions piece about this very topic.

"One might imagine a pleasing symmetry in the encounters between people with self-demand amputations and the non-disabled, both enjoying and thriving in their roles of giver and receiver of charity and pity. "

The author here shows a profound misunderstanding of BIID and the reasons we need impairments. We are not desiring pity nor charity.

Perhaps the author puts too much weight on "identity", and not enough weight on "body integrity". We need an impairment to feel whole, but that need is not necessarily related to a need to identify to the "disability experience". For most of us (anecdotal evidence speaking), the desire is not to be able to identify with other amputees, paraplegic, blind, or deaf, but to simply *be* that way.

" It is clear that medicine can confer identity, however, I think both parties are mistaken in their belief that the scalpel confers it."

Again, "the scalpel" is not confering the identity. It is merely providing the body image required by people who have BIID. Most people with BIID do not wish to be "disabled", we wish to have an impairment. It just so happens that with the physical impairment comes the identity of being 'disabled' as well, but that identity is not what is sought, nor understood by the "Indentity" in Body Integrity Identity Disorder.

" some people, it appears, do want the "social stigma associated with disability" "

No, this is innacurate. We do not wish to have the 'social stigma associated with disability'. We simply need the impairment. The rest while almost inevitable, is only secondary and somewhat irrelevant to our need.

"The section entitled "Morphological Boundaries" demonstrated that body boundaries do not necessarily correspond with the margins and contours of the anatomical body. At first glance the body image of the self-demand subject appears to be radically different to the norm; however this discounts the fact that the lived body is not analogous to the body on the anatomical chart. Thus, a person finding a limb superfluous to their body image is not as surprising as it may seem at first. "

We find no fault with this reasoning.

"The second issue explored in this paper is the way in which self-demand amputation might cause us to question non-disabled preconceptions about disability, and bring to the surface some of the invisible, yet pervasive ways that "disabled" is produced as an identity. "

This is also correct.

However, the author makes a fundamental mistake, assuming that those with BIID are seeking the identity of a person with a disability, when in fact, we are "merely" seeking to align an internal perception of our own bodies with the physical being of that body.

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