BIID: Not just for amputee-wannabees
I first became aware of voluntary amputation in 1998, when I got a telephone call from a producer at the BBC. He told me was making a programme about two people who each wanted to have a leg removed, even though there was nothing wrong with the limb. The producer wanted to know how the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, which I had edited, would diagnose such individuals. I told him that I had never heard of such a condition and that it was nowhere to be found in the manual, but that I wanted to know more.
I learned from the producer that the condition had been named apotemnophilia in 1977 by a noted sexologist, based on two men who experienced intense sexual arousal when they imagined becoming amputees. But the individuals in the documentary didn’t fit this picture, the producer added. They wanted amputations because they felt that they should have been born with only one leg, and were intensely uncomfortable having two. I was startled and intrigued. Who would think that such a condition could exist — that having all one’s limbs could be experienced as being fundamentally wrong?
With the assistance of Greg Furth, a psychologist who both studied and suffered from the desire for amputation, I interviewed 52 people with the condition, which has come to be called Body Integrity Identity Disorder (BIID). I expected them to have similar accounts, but there were almost as many stories as there were study subjects. Some said their feelings went back as long as they could remember. Others traced their desire to a vividly remembered encounter with an amputee later in childhood or early adolescence. None, however, reported that their desire started in adulthood.
The focus of their feelings also differed. Some could point to the precise location of their desired amputation (“exactly three inches above the knee”). For others, the target limb had changed over their lifetime — from arm to leg, from one side to both sides, from left to right. Some told me that their discomfort with their limb and their preoccupation about removing it was so all-consuming that they sought amputations; several had even attempted an amputation on their own. But not all: others could cope by pretending to be amputees.
While I was fielding requests for participation, I came across two individuals who reported a lifelong desire not for amputation, but to be paraplegic. Out of curiosity I asked if I could interview them informally. It turned out that their case histories closely resembled those I’d heard from would-be amputees. One told me that the desire was always there; the other reported onset after childhood exposure to a paraplegic classmate in a wheelchair. Both felt that they should have been born paraplegic, and that having sensation and movement in their legs felt inappropriate and uncomfortable. One of them spent hours every week in a wheelchair, pretending to be paraplegic.
This was my first inkling that, at least for some, the core feature of BIID is not the desire to lose a limb because it feels like it does not belong, but the desire to become disabled in a major way — whether it be as an amputee or a paraplegic. If this were true, one would expect that there would be people who desire other major disabilities — and there are. While much less common than the wish to be an amputee or paraplegic, there are individuals who desire to be blind or deaf.
It turns out that the desire for paraplegia may be as common as the desire for amputation, although both are rare. One of the main web sites devoted to individuals with BIID, www.transabled.org, is curated by an individual who wants to be paraplegic, and a 2008 feature film based on BIID, Quid Pro Quo, focuses on the paraplegia-variant of the condition.
Perhaps the biggest practical difference between BIID sufferers who want to be paraplegic and those who desire amputations is the lack of a surgical option: there are no surgeons anywhere who are willing to make someone paraplegic, nor any safe methods available for someone who wishes to do it themself. Unlike amputation seekers, who at least have the hope of obtaining a voluntary amputation, these people have no current prospect of a “cure”.
I thought of these distinctions as I read Do No Harm, the recent MATTER investigation of BIID. It offered a compelling account of two individuals with the condition, but I was struck by how it made all BIID patients seem the same. The story portrayed BIID as a neurological condition, a manifestation of a defect in the mapping of the body onto the brain. My view is that while the desire for modification is a common thread between cases, the desire itself may have several underlying causes. Some cases likely have a neurological origin, but others will be better understood as psychological — problems of identity, and of the mind. The neurological underpinnings in these cases may be quite different. Like many psychiatric labels, BIID should be seen as an umbrella term that encompasses many different conditions. And this is about more than semantics. If we talk about BIID too narrowly, we risk disenfranchising people whose stories overlap only partially with those told in Do No Harm.