BIID: "Assisted Disability" A Teacher's Essay

“What is it that every man seeks? To be secure, to be happy, to do what he pleases without restraint and without compulsion.”
-- Epictetus, “Discourses,” 1st century A. D.

Date:
Thu, 19 Jun 2008 14:37:45 -0700 [06/19/2008 05:37:45 PM EDT]
From:
Sean
To:
rlt@umich.edu
Subject:
[You Are Here: Disease as Performance] New comment on Eng. 325 Student Essay BIID (Body Integrity Identi....
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Sean has left a new comment on your post "Eng. 325 Student Essay BIID (Body Integrity Identi... First off, I must say, I am impressed by the quality and insight of this essay. The author does not get everything right, but makes many statements that are *right on*.

Thank you.I am someone who has BIID. I need to be paralysed. I have been feeling like this for over 35 of my 40 years. It is not something I have control of. It is not something sexual (though it is for some people).

One thing to correct is in the very opening statement, saying that BIID is only for people who need an amputation. That is inaccurate. Recent research is confirming that the condition may also manifest by people needing to be paralysed, or blind, or deaf, etc.

I am the owner of http://biid-info.org/ which is a resource for information about BIID, and contains the majority of published research about BIID. I am also the founder and principal author of http://transabled.org/ a multi-authored blog about the experience of living with BIID. These two sites might be of interest if you wish to learn more about the condition.

Wow! Sean, I never thought I could be an advocate for this cause, but here goes. What struck me most about your comment is the idea that BIID includes those who desire paralysis, blindness, and deafness, as well as amputation.

A note here: those who seek to be, as Sean terms it, “transabled (the desire to be disabled),” refer to themselves as “wannabes.”

Sean writes, “I well remember the first time I discovered I wasn’t the only one feeling this way. I had a long discussion that evening with Sue, who told me about her desire to be paralysed.

Writing in the “Journal of Applied Philosophy, Vol. 22, No. 1, 2005, Tim Bayne and Neil Levy argue that, regarding the moral arguments against what I will call “assisted disability,” “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.”

If we eliminate Body Dysmorphic Disorder (BDD), the belief that a part of the body is ugly, or somehow diseased, and Apotemnophiles, a psychosexual disorder whereby one is sexually attracted to amputees and/or excited by the idea of becoming an amputee themselves, we are left with the prevailing view that there is a disconnect between the way an outsider sees their body and their subjective perception of how it appears. Philosophically this distinction is between the phenomenal and self-perceived body. But there are a growing number of moral philosophers who question this assumption.

Bayne and Levy take issue with the idea that the wannabes subjective/objective body mismatch is at the heart of their wish: “wannabees 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 is not primarily a conflict between their body and their body schema”(76). Robert Vickers, a successful wannabee, writes, “I was recently asked, “but doesn’t your use of a prosthesis negate your intent?” Simply, ‘No.’ The prosthesis is only a mobility aid, and when I remove it, there is my stump, my security blanket. After a journey of forty years, visiting places of darkness and deep despair, there is peace and satisfaction in fondling the amputated remnant of my leg.”

Bayne and Levy examine three common arguments (Harm minimization, Autonomy, and Therapy) often cited in favor of amputation requests. The harm minimization justification amounts to a sort of pre-emptive strike against the possibility that the wannabe will botch the job. They cite the ubiquitous presence of websites offering efficient and painless methods of amputation: shotguns, chain saws, wood chippers, and dry ice, for instance. Vickers cites the case of Lily, a wannabe amputee he met on an internet chat group site: “the freezing process with the dry ice did not go quite to plan, and she reached hospital with her legs ‘underdone.’ At first she was to achieve her goal, with the surgeon agreeing to a simple, neat amputation of both legs above the knee. But then the surgeon….Management, ethicists and no doubt media spokesmen and spin doctors, all hearing of the proposed surgery and the desire of the patient, stopped the surgery, patched-up her rather superficial injuries and sent her back home to France….Lily has had nine operations to affect repair. Such was the extent of the damage, Lily’s leg is, in places, bone covered with skin. Grafts are failing, infections are breaking out, she is in constant pain, can’t walk and in a wheelchair. An accident victim with the same injuries would have been offered amputation as the preferred option. Was the surgeon wielding his unassailable power vindictively? He had a patient under his knife, she actually wanted her leg amputated and he was bloody-mindedly determined he was not going to give her her wish.”

But what advice would these sites have for Sean and Sue? Sean writes, “I walked to the kitchen. Picked up a paring knife. Put it against my spine. Stood there in the cold (it’s 10C in the kitchen) and just stood there. I wished I could cry. I finished popping the corn and came back to the lounge and watched TV. Like nothing had happened. Like nothing is happening.” The question also arises, what would Bayne, Levy, and other ethicists say about a physician paralyzing, blinding, and deafening (is that a word?) someone. The harm minimization argument would also seem to apply in these cases. Assuming that no reputable doctor would consent to these requests, black-market disablers would certainly arise to fill the void. The problem here, as Bayne and Levy frame it, is that the “inability to confidently distinguish those patients for whom the desire…might be transient from those who will persist in their demand” presents an ethical quandary.

So what to do? Again, Robert Vickers, “Something inside me collapsed, suddenly my handicap became all consuming. Nothing else mattered. It was as though I had hit a brick wall, and life could not go on until I sorted out my disability; overcame my handicap. It had become the handicap from hell. I lied to my wife, I lied to my employer and took the day off to cure my handicap. The next day I woke from surgery, relieved and elated to see that my left leg had been reduced to a newly bandaged, above knee stump. Nothing short of sheer, unbridled ecstasy would describe my joy. At last to be able to live my life as I had wanted to live it since childhood.”

Regarding the “autonomy” argument, a position central to my opinions on BIID, many contend that the bizarre nature of the request precludes the condition of rationality implicit to autonomy. Bayne and Levy cite Arthur Caplan’s contention that one’s competency comes into question “when they’re running around saying, ‘Chop my leg off.’” What seems obvious here is that, as in most things controversial in a free society, these kinds of requests must be determined on a case-by-case basis. In Vicker’s case, his amputation was a Godsend: “Next time I woke, it was as if in heaven. The leg I had despised and desired to be rid of since a small child, was gone. I didn’t care where, just so long as I had my newly bandaged stump to see me through the rest of my days. Gone in that simple operation was years of depression and sadness, gone any further thoughts of suicide, gone the hatred of myself and my inadequacies. It was the start of the rest of my life, and I was to start it the way I always knew it was meant to be.”

A second objection has to do with the idea that wannabes are fundamentally delusional. As Bayne and Levy point out, some see BIID as a “monothematic” phenomenon, “akin to, say, Capgras’ delusion, (the delusion that a close relative has been replaced by an imposter) or Cotard’s delusion (the delusion that one is dead). The problem with this is that wannabes are not “globally” irrational. Meaning that, while their desire seems irrational, the deliberations surrounding their beliefs are rational, and should be honored.

Robert Vickers: “I couldn’t even get ‘Elementary Suicide’ right. I was severely handicapped, but diagnosed as ‘clinically depressed.’ Psychiatrists treated me without success. None of their tranquillisers and antidepressants worked, but then I could not tell them what was really wrong, what my handicap was. It was too weird, too painful to tell anyone about; it was just there, festering away, destroying me. Two years later, I tried to cure my handicap and failed. This time I got more drugs, more psychiatrists, shock treatment and unwanted surgery over three months in hospital. I told the doctors what I wanted and didn’t get it, but was still too ashamed to tell them why.”

The therapy argument assumes the wannabes perception of themselves is something that can be cured. Vicker’s testimony above surely suggests that the therapeutic approach is as wrongheaded as the idea that homosexuality can be cured. For me, as in the case of assisted suicide and abortion, the issue is one of free choice. Given that one is of age and sound mind, and insofar as a respect for the rights of others is in place, one can do with their body as they wish. In a free democracy it should be assumed that “rationality and autonomy” are fundamental to guaranteeing the free agency of all citizens.

What troubles me (big surprise) is that, as Sean points out, “to read some of the articles [on BIID], blog entries and comments, it’s not just people disagreeing with us. It’s people who are violently and aggressively against us. And this is wearing me down.” Let’s kill those wannabes! Too much!

Bayne and Levy provide some insight into what prompts these kinds of responses. Under the subheading of “Repugnance” they take up the isssue of moral disgust: “Wannabes evoke an affective response not dissimilar to that evoked by the prospect of kidney sales, bestiality, (see ‘Murder in My Heart for the Judge’ post), or various forms of genetic engineering”(84). Certainly, for many, these kinds of reactions are understandable, but, as Bayne and Levy put it, “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”(84).

As Bayne and Levy rightly conclude: “In an important sense, a limb that is not experienced as one’s own is not in fact one’s own. Disorders of depersonalization 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”(85).

Sean, here’s my question. Bayne and Levy are university professors in Australia. You are from New Zealand, so what’s the deal? Is BIID more common in your part of the world? Why is it this issue is more prominent down under? Is there a greater public awareness on your continent?

Sean, feel free to use me as a link on your website.

Peace – Randy Tessier