Phil recommended I visit the Glyptothek as we sat together on a bench in Munich’s Eastern Cemetery. “This has nothing to do with what we will be talking about,” he said, “but they have ancient sculptures with missing arms and legs. They are hundreds of years old and have been destroyed.”
I visited the museum on one of my last days in Germany. The entrance issued into a vast corridor where sculptures stood on pedestals, suffused in natural light. I wandered through, taking in an armless Athena and soldiers with stumped knees. Despite his warning, I wondered: When Phil watched amputees, did he see what I saw in these bodies?
Body Integrity Identity Disorder (BIID, also called “Body Integrity Dysphoria”) describes the persistent, non-psychotic need to acquire a disability, usually an amputation. Only identified in developed nations and primarily among men, BIID may be less rare than previously believed. Especially since Dr. Michael B. First coined “BIID” in 2005, online forums for people with the condition have proliferated, counting thousands of members. BIID has only recently been added to the International Classification of Diseases and not yet to the Diagnostic and Statistical Manual of Mental Disorders (DSM). There is no known treatment, and only amputation seems to “cure” the condition in most individuals. Proponents of self-demand amputation argue that, left untreated, BIID can be a life-threatening illness. People with BIID have attempted dangerous self-surgeries, sometimes resulting in death. However, the ethics of self-demand amputation remain hotly debated in most medical communities, including those in Germany. In fact, according to what First told me in an email, much of the research on BIID has come out of Germany. And the presence of Germans on BIID forums is so pronounced, according to one neuropsychiatric report, “Body integrity identity disorder crosses culture,” that some have speculated as to whether people with BIID might share a German “gene.”
In October 2018, I met Phil on a Yahoo forum for people with BIID after receiving moderator approval to participate as a researcher. Phil—who would never give me his real name—was one of the few members who answered my request for interlocutors. His response—Hi Ms. Lucas, I’m a person with BIID from Germany. What do you want to know?—sparked an eight-month email exchange, culminating in my trip to Germany.
The morning was overcast. Phil cycled up to where I stood waiting, in front of the cemetery’s main pillared building; he’d chosen this site to avoid running into anyone he knew. He was a lean, tall man in his early fifties with a thin straight mouth, square glasses, and wisps of graying hair. His long-sleeve shirt and summer pants suggested the crispness and fastidiousness of a man who cared about his looks and valued convenience and clarity in his day-to-day.
A week later, in a town to the north, I met Elizabeth, whom Phil had put me in touch with via email. When I walked up to her on a touristy street in front of the French café she’d recommended for our interview, it was easy to know I had the right person. Her hair, dyed an unabashed copper-red, hung past her shoulders. Her jean skirt clung tightly to her hips, light blue like the tattoo of the shooting star on her right shoulder. She was around the same age as Phil, and bold eyeliner lent her eyes a Cleopatra protuberance. From the stump that ended her left arm, a studded pleather purse dangled. She extended her single hand in greeting, her touch tenderer than her style.
Seven years before, Elizabeth had had her arm surgically amputated on the black market abroad. Phil, for his part, had wanted to rid himself of both his legs for decades.
Before meeting Phil and Elizabeth, I’d hypothesized that longings for pity, care, or power might motivate or inform BIID desires. Early in our conversations, however, I found that this did not seem to be the case. I asked Phil whether, amputated, he’d find himself more or less strong and in control. He said, “I don’t think that control is a category of interest here.” In response to the same question, Elizabeth described the emotional strength she experienced upon surgery: “When I feel right, I feel more at ease with myself and happy and strong.” Nor did Phil and Elizabeth seem to be pursuing sympathy or a loss of power. Elizabeth said, “It’s the common concept of disabled people, that one has to feel sorry for them, which isn’t true because they also live normal lives and have fun.” Likewise, Phil insisted that, were he to undergo surgery, he would need minimal help from public services.
My next question—which I’d prepared without much forethought—was more revealing. I asked Phil and then Elizabeth whether, as amputees, they were or would be more or less beautiful. Phil answered, “In my eyes, more beautiful. In the eyes of others, not.” I probed a bit: Was it stumps he found beautiful? “More of the whole,” he said, motioning inward. “The stumps are just a part of it. It’s just the whole dimension, the whole way to move.” Elizabeth also insisted that amputation beautified the body’s structure and balance. For her the aesthetic has to do with “the whole body.” She liked the asymmetry of a single amputated limb and the look of something missing. Though she says she had, since childhood, dreamed of having her arm amputated, she said, “If I had had an accident and it was a leg, then I would have said, okay, better than nothing.” That, for them, amputation really meant beauty came out in the ways Elizabeth casually referred to her “nice stump” and to one-handedness as “more elegant.” Likewise, Phil spoke fervently of images and videos of amputees. For Elizabeth and Phil, BIID seemed to be based in aesthetic attraction, not in disability.
Medical researchers have found that BIID desires first occur in childhood. Speculating that these first experiences might shed light on dimensions of BIID—aesthetic or otherwise—I asked Phil and Elizabeth about their early memories of attraction to amputees. I was fascinated to find that both recalled Nazi veterans. Phil had done some research into federal statistics to determine that most of the amputees he was captivated by as a child must have been returning prisoners of war. Likewise, Elizabeth remembered that, at the age of five or six, she started to notice and be drawn to amputated veterans in her midst. “I really liked them,” she said, touching her teacup, “and I wanted to be like this.”
Postwar literature sheds light on what Phil and Elizabeth might have seen in amputees as children. In his paper “Men of Reconstruction – The Reconstruction of Men Returning POWs in East and West Germany, 1945–1955,” historian Frank Biess at the University of California, San Diego argues that after World War I and especially after World War II, many Germans saw disabilities as signs of personal and national loss and defeat. Leading up to and during World War II, Germans had trafficked in illusions of social and territorial wholeness, stability, and dominance. Now, these illusions gave way to absences that, for some, amputations and other disabilities seemed to embody. As Elizabeth said, “In the eighties still, disabled people even in the countryside were locked away at home. It was a disgrace to the family.”
Soldiers with disabilities were jarring, Biess writes, in the contrast they presented to the ideal of the powerful German soldier and reinforced fears of emasculation from defeat. An enormous number of men had died in the war, and those who survived had their manhood—then associated with Nazism—thrown into question. That the Nazis deemed people with disabilities unworthy of life, to be exterminated in concentration camps, rendered such sights even more unsettling. As Carol Jean Poore, professor emerita of German Studies at Brown University, tells us in her article “Who Belongs? Disability and the German Nation in Postwar Literature and Film,” the Nazis murdered around 260,000 people with disabilities and forcibly sterilized around 400,000 others. In postwar Germany, people knew about these practices, though usually refrained from speaking of them. When they saw disabled veterans, their assumptions about who was and was not worthy of life were destabilized. Poore interprets representations of people with disabilities in Die Sünderin (1951) and Ich klage (1941), two films that were widely viewed after the war: “Both films suggest that the alternative is either for the disabled person to be totally cured, or for that person to request to be put out of her of his misery.” Many Germans could not tolerate the fact that soldiers recently tasked with murdering people with disabilities were now themselves impaired.
Members of the postwar generation cast themselves as victims to cope with their shock and suffering. As Biess tells us, in post–World War II testimonies, both doctors and laypeople compared former Nazi soldiers and returning prisoners of war to concentration camp prisoners, for both their psychological suffering and the dystrophy of their bodies. In other cases, able-bodied Germans compared themselves to people maimed in battle. Both Biess and Poore show how many Germans made such equations to obfuscate their shame. They turned the Nazi party into a minority faction that had swayed unwilling Germans into ultimate defeat.
These displacements did not stop with the generations that experienced the war firsthand. These influences manifested in the second generation as a continued identification with the victim via the parents. In a therapy session with the psychoanalyst Tilmann Moser, who dedicated his practice to investigating the effects of Nazism on Germans born during and after World War II, one patient described his father, a former soldier: “I talk about him as if he were actually a handicapped person! At the same time, he wasn’t handicapped at all.” He was sympathizing with his father’s feelings of loss and emasculation. At other times, feelings of victimization grew not so much out of empathy with parents, as out of a sense of being oppressed by them. In a 2008 novel by the Algerian author Boualem Sansal, two brothers find out that their father was an SS soldier. This discovery throws them into a welter of anxiety, to the point where they see themselves as concentration camp victims for having to bear this legacy.
Displacements aside, images of disability and amputation come up in postwar testimonies to express loss and longing. Nadine Fresco, historian and child of concentration camp survivors, describes this inherited trauma as the feeling of a limb she has never had: “It’s a phantom pain, in which amnesia takes the place of memory.” The silence of parents and grandparents who experienced the war contributed to this feeling of something embodied yet absent.
Research shows that even shifting national borders can engender feelings akin to phantom limbs. Franck Billé, a cultural anthropologist based in University of California, Berkeley, posits in his ethnographic essay “Territorial Phantom Pains (and other Cartographic Anxieties)”: “Nationalism borrows heavily from the corporeal register, thereby equating discursively the nation with a physical body.” Drawing on ethnographic data collected from Amur Oblast, he shows that older Russian and Chinese inhabitants actually sense “lost” territories in their bodies, as if they’d been amputated. Similarly, anthropologist John Borneman at Princeton University describes the “dismemberment” of Berlin after World War II and during the Cold War. For people like Phil and Elizabeth—as for other Germans—territorial losses may have resonated with images and feelings of amputation.
Speaking with Phil and Elizabeth, I wondered whether, as children, they picked up on associations between amputation and loss, even if in vague, amorphous ways. Their sensitivity to stigmatized veterans may have been heightened because both felt different from their peers. Elizabeth said, “My childhood was horrible because I was overprotected by my parents and my grandparents. My mum is mentally ill. I didn’t know this back then. And so they really suppressed me.” As for Phil, that he was different was clear early on: “When I grew up, the word ‘gay’ doesn’t exist in German. You say schwul, but that was pejorative and it took a lot of time until the gay movement turned it around so that you can use it now: I am schwul, I am proud.” For Phil and Elizabeth, feelings of difference may have meshed with sensitivity to postwar sentiments to fuel or awaken an attraction to amputees: people onto whom they projected both existential and historical feelings of alterity and defenselessness.
If some symbolic value once emanated from amputees, it had, as of Phil and Elizabeth’s adolescence, evolved into an overwhelming impression of beauty, unadorned by postwar associations. When I asked Phil whether there might be a correspondence between the war and his BIID, he was incredulous. “I found war interesting because my grandfathers talked about it. But I never found fascination for a war or for the military.” Based on her involvement in on- and offline BIID communities, Elizabeth believed that most people with BIID were middle-aged Germans; her American friend, who organized black market surgeries abroad, said BIID was “in the water here.” It was perhaps no surprise, then, that she seemed more stirred by the possibility of a connection. “I never thought about this, with the war,” she said, eyes fixed on me. “But it could be. It could be.”
Our conversations suggested that, having shed its origin or symbolic value, the aesthetic dimensions of BIID went on to attune Phil and Elizabeth to other pleasures offered by amputation. This first came out back in the cemetery, when I asked Phil how he would get around were he to be amputated: “With a wheelchair, on a skateboard. On the hands and the butt—whatever.” Later, during our second meeting in the bar of a sports complex, Phil disclosed an affection for wheelchairs in particular. “Of course I like wheelchairs,” he admitted with a laugh. “It feels good to sit in them and drive around with them. When I think about it right now,” he showed me his palms, “there’s even a sensation in my hands: how it would feel to push the rim, and how it would feel right.” Phil called the experience of driving a wheelchair “fun.” “It feels like home,” he said with evident pleasure, “so that’s the way it should be.”
The wheelchair did something else for Phil. Being gay and having BIID had cultivated in him a sense of difference. He felt good being able to assert this difference through picturing himself in a wheelchair. “It’s a bit forbidden and a bit weird. That makes it more attractive,” he said. Elizabeth also derived pleasure from having people see her as she was, complete with eccentricities. “I’m proud, and I’m happy,” she said, and she chuckled at her disappointment that her friends sometimes forgot she was an amputee. She attributed their forgetfulness to the confidence she radiated. Whereas now, she gave people little reason to be overly conscious of her physical appearance, before she’d felt anxious under their gazes—when, for instance, she used to play keyboard in an electronic music band as a young woman. For this reason, unlike Phil, she disliked prosthetics: “It hides the nice stump. One wants to see it.”
Elizabeth’s amputation opened another channel of pleasure: She had come to appreciate the casual concern that some people showed her. When I asked her why she thought this might be, she sat back in her seat. “When I was a child,” she said, “and when I had a problem or when I was ill, then my mum was so fussy over me that I really dreaded being ill. This was so horrible. And now when somebody fusses over me or feels sorry, it doesn’t involve this big fussing.”
Aside from these, there were other pleasures Phil and Elizabeth dreamed of or relished. When I observed that a lot of the videos Phil watched online starred very athletic amputees, he emailed me the following: “I am dreaming of starting to do more sports ever since I was 16 or so, but from time to time I start and after some months I let it fade out again.” Phil thought that by becoming disabled, he “might be protected against expectations of all kind.” I understood his words to mean something like this: Most people do not expect athleticism or strength of amputees. So being amputated might free Phil from certain demands.
Even without external pressures, his longing could surge. He recalled this experience, as if it were an unconsummated love: “I was studying at the university, and I hadn’t thought about BIID for weeks, or even months. And I went down to the subway, and the subway came in, and out of it came a young man, a beautiful young man in a wheelchair, and it was like being hit hard here.” He patted his chest. “It was like: I should sit there.”
Hovering below the surface, BIID emerged at the sight of this beautiful amputee and his wheelchair. The experience was so fine-tuned and vivid that Phil expressed astonishment when, in answer to his question, I told him that, no, I had never tried out a wheelchair. “You should,” he said, leaning toward me. “It’s fun when it’s smooth. But when it goes up!” He laughed, falling back in his seat. When I asked, he told me he sneaks in rides whenever he has the chance: in airports, in hospitals, wherever unsuspecting wheelchairs sit, in repose.
As we spoke, Phil brought up similarities between BIID and “people with GID or transsexuals.” By GID, he was referring to gender dysphoria. The term “GID” is regrettable for many reasons, and Phil seemed to assume a homology between transsexual and transgender people. I wasn’t surprised that Phil made this analogy, or that he assumed that “transsexuals” and “people with GID” are interchangeable (they aren’t—someone can get top surgery, for example, without being trans). Medical professionals, academics, and people with BIID (some of whom call themselves “transabled”) have drawn these comparisons so frequently and insistently that medical discourse surrounding BIID has been heavily influenced by gender dysphoria. While one would hope that psychiatry has since evolved, in 2012, Dr. Michael B. First and Dr. C. E. Fisher summarized the parallels in a review: In gender dysphoria as in BIID, “the individual is extremely uncomfortable with aspects of his or her anatomy.” They add, “onset is in childhood or adolescence” and “[s]urgical modification to bring the person’s body in line with his or her desired identity . . . appears to ‘cure’ the disorder in at least some individuals.”
Nikki Sullivan, associate professor of critical and cultural studies at Macquarie University in Australia, has extensively critiqued the conflation of BIID and gender dysphoria. Neither BIID nor gender dysphoria provides an empirical description of the experiences they presume to represent. Instead, these discourses pathologize trans people and those with gender dysphoria and BIID, assuming and reinforcing mainstream understandings of what constitutes a whole and healthy body—where “healthy” and “whole” carry not only physical, but also moral and political connotations. In her article, “The Role of Medicine in the (Trans)Formation of ‘Wrong’ Bodies,” she argues, “While it may be perfectly understandable for [people with BIID] to draw on arguments that have proved successful in other contexts and in relation to other contested surgeries, the conception of the relation between self-demand amputation and transsexualism as analogous is counter-productive.” Analogies end up buttressing the idea that non-normative desires are “disorders” to be fixed, that we must squeeze all bodies at any given cost into the mold of what counts as a properly functioning, aesthetically pleasing body. Again, the fear is that, by making such analogies, people with BIID will bolster pathologizing frameworks of both gender identity and disability.
My conversation with Phil suggested that some people within the BIID community would oppose Sullivan’s criticisms. They believe that by invoking medical interpretations—particularly neurological ones—they exacerbate negative bias. Phil, who’d helped found a forum for Germans with BIID, told me why he eventually quit his role as moderator: Because many people with BIID feared being seen as crazy or perverse, they confined the definition of BIID to something “purely hardwired” and “totally stable,” alienating members who believe “BIID has to do with sexuality” or other complex social dynamics. However, in “‘BIID’? (dis)orientations and the phenomenology of ‘home,’” Sullivan says that such behavior itself ends up reinforcing the very pathologization it seeks to avoid: “BIID is constituted as an individual(ized) pathology that has little or nothing to do with one’s being-in-the-world.” Caught between a rock and a hard place, people with BIID biologize their experiences and make problematic comparisons. While these frameworks might not be 100 percent fair or accurate, for the time being, they serve strategic and emotional functions. By mobilizing medical discourse on online forums, people with BIID lobby for respect and surgery and empower themselves.
These forums function as more than just info boards for black market surgeries, though. For Phil, absorbing this content and discussing BIID online in a like-minded community—and with doctors and researchers such as myself—reshaped his sense of self. In particular, before the 1990s, he’d only wanted one leg amputated: “Then suddenly it was clear: no, it’s both.” Reading scientific articles and chatting with people with BIID, he learned that many people with the condition report feeling a line where their limb(s) should end. He gradually started feeling a line marking his own legs.
If Phil still walked on two legs, he said, it was less for ethical or political reasons than for personal ones. He feared what his loved ones would think and felt anxious about practical barriers, such as navigating public transportation: “I travel a lot. And that would be complicated with a wheelchair.” He also described subtler pleasures he might miss, such as digging his toes into the sand. As for Elizabeth—whose amputation Phil deemed “minor”—she “became far more self-confident and more radiant and more positive” as soon as she underwent surgery. Her husband of eleven years supported her in her decision to get amputated, after a moment of shock on hearing about her condition for the first time. To explain her amputation to everyone else, she proffered a story that her surgeon abroad had established for her: a dresser fell on her arm. This lie became a source of distress as she got involved in the amputee sports world. She experienced “a bad conscience” for misleading other amputees. What helped, Elizabeth said, was remembering that she had not chosen BIID: “It’s no cancer, no accident. But it’s a disease called BIID.” What’s more, Elizabeth alleviated her shame by “giving back” to other amputees: “I show them: hey, it looks nice, and it’s no problem, and look at me, and I deal with it in a different way, and I’m happy, and I show myself, and maybe this helps the other person.”
Elizabeth says she alleviated her shame by “giving back” to other amputees: “I show them, ‘Hey, it looks nice, and it’s no problem, and look at me, and I deal with it in a different way, and I’m happy,’ and I show myself, and maybe this helps the other person.” The way she tells it, it seems as though her lie was a gift in disguise. Whether her athletic teammates would agree with her framing, or whether they were even comforted by her optimism, was something I could not confirm, based on the secretive nature of my research. I could only take Elizabeth’s word for it.
Back in Munich’s Eastern Cemetery, the hum of gravekeepers at work occasionally reached Phil and me. A man filled a watering can, and someone drove by in a green truck. We faced the old gravestones, among which the ashes of Nazi resistors had been scattered during the war. Phil was attempting, in this moment, to get across to me how it felt when he saw beautiful amputees. He described a video he once saw of a young veteran getting dressed, as well as a picture of a double-leg amputee in a marathon. Then he broke off, as if realizing something. “Do you know this famous poem by Rilke? Where he looks at one of these antique statues?” He quoted the poem, “for here there is no place / that does not see you. You must change your life.” That was how he felt, Phil said, when BIID hit strongly.
That night, I looked up “Archaic Torso of Apollo” online. I was surprised to find that Rilke describes a sculpture strikingly reminiscent of Phil’s attraction to amputees: a legless, armless Apollo. Were the torso not a perfect fragment, it would not radiate from its edges, “would not, from all the borders of itself, / burst like a star.”
YASMINE EVE LUCAS originally from Montreal, is a writer, visual artist, and PhD Candidate at the University of Toronto. Her prose and poetry have most recently appeared in Lunch Ticket, Hobart, Fanzine, and Barnstorm Journal. Website: www.yasmineevelucas.