Sofi didn’t hate her feet, she just never really felt like they belonged to her. In fact, everything below her knees seemed more like stilts, due to an ever-present identity dysphoria causing lifelong, emotional anguish. Even a passing glance at her toes could incite months of depression and suicidal ideation.
And so, in 2005, at the age of 19, Sofi began contemplating ways to chop them off. The freight train was an option. It hauled cement and trundled past her seaside home in Scotland at 2 p.m. every day. She considered draping her shins across the tracks, but envisioned being dragged by her legs for miles and opted against it. A shotgun could work, but firearms are nearly impossible to obtain in the U.K. She even thought about staging a car crash, but the unpredictability of an “accident” that could injure others seemed imprudent.
“Something had to be done,” the 34-year-old web designer writes via email. “I had these things attached to me that I didn’t want, but couldn’t do anything about.”
Willingly amputating healthy limbs is anathema to rational thought, but the condition is common enough to have a name, Body Integrity Identity Disorder (BIID), coined in 2004 by Michael B. First, a professor of clinical psychiatry at Columbia University who describes BIID as “a rare, infrequently studied and highly secretive condition” involving a mismatch between the mental and physical body. BIID has been the subject of multiple documentaries and tabloid segments, though due the intense secrecy surrounding the condition, no one knows exactly how many people suffer from it. The Guardian estimated the number was around 300 in 2012; roughly a thousand are thought to have it today, though, again, no one really knows.
The participants in First’s study insisted that they didn’t want amputations, they needed them (all BIID sufferers use the word “need” rather than “want” to describe their desired body modification). Of 52 participants, nine had already completed amputations; 38 needed a leg amputation, the overwhelming majority seeking it above-the-knee on the left side, far outnumbering the seven who wanted to cut their arms off.
BIID has an onset in early childhood, and 80 percent of sufferers are men. The main rationale given for desired body modification is to feel “complete” or “satisfied inside,” with sexual motives offered secondarily, if at all. A disproportionate percentage of male BIID sufferers identify as gay or bisexual, while most females are straight. They all, though, share “an intense desire to amputate a major limb,” First tells me, or to become paralyzed by severing their spinal cord.
Sofi had met with a psychiatrist, but says he didn’t really tell her anything she didn’t already know. Instead, for therapy and support, she turned to a Reddit community of 600 BIID-identifying people from around the world who recognize that her condition has no cure. Nor is there a doctor in the U.S. (or anywhere in the developed world, for that matter) who openly conducts illegal voluntary amputations. As such, the BIID subreddit serves as a de facto tutorial for best practices on self-amputation, using a tourniquet and saw, or more commonly, dry ice.
Sofi attempted the latter in 2007, at the age of 21, which she says was “a complete disaster.” While sourcing dry ice from a party supplier was surprisingly easy, it burned so much that she had to withdraw her feet from the bucket immediately, leaving her with blisters so bad she couldn’t walk for weeks.
Sofi is one of a dozen BIID sufferers I speak with, six men and six women, each battling a lifelong war with their own bodies. (To protect their anonymity, I’ve used pseudonyms throughout — including for Sofi.) All have had some form of mental health therapy; none has been helped. “I told my latest psychiatrist about my BIID,” says Diana, a middle-aged, heterosexual married mother who needs to be a C2 complete quadriplegic. “He was fascinated and knew enough to know he couldn’t do anything to cure it.” Alexandria, a 19-year-old woman in Arkansas who needs to be paralyzed from the waist down, has “tried every skill in the books, to no avail,” fruitlessly meeting with a half dozen mental health professionals about her condition.
And Sergei, a 40-year-old IT specialist in a small town in Russia who needs to amputate his left foot, has seen a psychologist only once, who prescribed Prozac. After taking the selective serotonin reuptake inhibitor, Sergei tells me he “didn’t see any changes in my desires, except that the idea to cut off my foot with a sharp knife stopped scaring me. I have a real photo from a guy who did it.”
Meanwhile, Sofi has remained chronically suicidal despite a lifetime of mental health evaluations. “Obviously, I wondered if I was insane,” she says, adding that unilateral amputation would be “almost worse than having both feet,” so if she went through with it, it had to be all or nothing. She’s wary, however, of the “clearly insane and delusional” people who message her all the time, mentioning voices telling them to borrow the neighbor’s chainsaw. Others are just “a massive cry for help,” or “attention-seeking fantasists hoping to become living torsos.”
The BIID community terms them “wannabe wannabes.” (There are actually multiple internal subdivisions: “devotees,” who are fascinated by and often sexually attracted to amputees, but don’t want amputations themselves; “wannabes,” who strongly desire an amputation of their own; and “realized wannabes,” who complete the desired body modification.)
First chose the name “Body Integrity Identity Disorder” to distinguish the condition from paraphilia, a term introduced in 1977 by John Money, then the best-known sexologist in the world, who co-published the first academic paper on the subject in the Journal of Sex Research with psychologist Gregg Furth. “One early hypothesis about the condition was that the sufferers fetishized the stump because it resembled a phallus,” explains Moheb Costandi, a molecular and developmental neurobiologist-turned-science writer, who tells me that few psychiatrists know about the condition today, and the ones who do, consider it a fetish.
That’s understandable, perhaps, given how BIID came into the public eye in the early 1970s. Costandi discovered a series of letters in Penthouse, sent in response to a one-legged woman describing men getting off to her amputation. (Again, now such stump lovers are called “devotees.”) The series became so popular that it led to a regular Penthouse column, Monopede Mania.
Jerry, a 72-year-old retired banker in the Southwest, is one such devotee. Emails from Jerry were lengthy and thorough, explaining that his obsession with amputees began as a 5-year-old and has “dominated his consciousness” ever since.
Every BIID sufferer I speak with echoes some iteration of this. For example, at age 5, Sofi recalls spotting a woman with bilateral, above-knee amputations shuffling down the sand toward the sea, remembering it as a “very significant” moment in her BIID evolution. Juan, a 38-year-old gay man in Mexico, realized his desire to be a double leg amputee, “all the way up with very small stumps,” at age 6, after seeing a man with the same disability. Alexandria would play a game with her sister racing up and down the slide without using their legs. (“I always won.”) Joanna, a 26-year-old woman in Spain, recalls the happiest moments of her childhood as being “whenever someone dragged me on the floor.”
“I’ve had the feeling inside me since I was a child that my legs didn’t belong to me,” Joanna says, echoing Sofi. Pretending to be amputated was the only way to cope, so she made a contraption that folded her legs back at the knee to appear amputated. “That helped me a lot for many years, until my accident,” she explains. One day, as she was walking to work, she claimed a motorist ran her over. “I was hit by a car and due to the pressure exerted on the muscles and the accumulation of blood, they had no choice to amputate or I could die,” she continues. “It wasn’t something I’d planned, but I’m glad it happened. If it hadn’t, maybe I would’ve done the amputations myself, which would have been much worse.”
To avoid such “accidents,” for harm-reduction reasons, Costandi endorses voluntary surgical amputations, which have been outlawed since January 2000, when U.K. surgeon Robert Smith amputated the legs of two patients at their own request. The hospital director called the amputations “inappropriate,” and since then, no hospital in the U.K. (or anywhere in the developed world) has performed a voluntary amputation. Instead, people suffering from BIID dangerously take matters into their own hands. Costandi references a New Yorker who traveled to Albuquerque to have his leg amputated by an amateur healer and died from gangrene a week later. “People are literally risking life and limb and many end up dying to get rid of these unwanted limbs. Isn’t it better to at least do them in a clean, sterile environment with medical professionals?”
As for Jerry the devotee, “I was always on the lookout for amputee girls throughout junior high and high school,” the married father of three tells me. He’d regularly stop by the library, just to look up “amputation” in the card catalog. When he wasn’t recalling its Dewey Decimal classification (371.1), he’d hang in the parking lot of a nearby prosthetics office, hoping to spot the “perfect girl,” though he says “any amputee would do.”
Jerry admits to being “terribly reckless” in the first years of his marriage and had “several flings” with amputees; he couldn’t help himself, despite loving his wife dearly. “I even risked a successful business career as a result of playing around. At least that part of my life is behind me. Though if I see a female amputee on the street, I still sometimes get a sexual rush.” (While some devotees, like Jerry, admit to being sexually attracted to amputees, it’s rare, and he’s the only one of the 12 BIID sufferers I speak with who expressed such an attraction.)
In 2014, Jerry amputated his left leg below the knee after lying to doctors about “unbearable pain” from an old leg fracture. He was referred to a surgeon, who agreed to do the amputation. “I remember lying on that gurney like it was yesterday,” he recalls. “I got up to use the bathroom and realized it would be the last time I’d walk on my own two legs!”
While Jerry says it was “amazingly easy” for him to find a surgeon willing to do the amputation, many others seek the services of “The Gatekeeper,” a 73-year-old retired telecommunication executive in Washington State named Andrew (again, a pseudonym), who over the last 16 years has matched more than 50 BIID sufferers with licensed surgeons abroad for covert amputations, thereby “relieving the BIID mental torture” and allowing them “to become the amputee they need to be.” A standard, above-the-knee amputation is approximately $26,000, which includes surgeon fees, hospital costs, follow-up care, transportation and meals and accommodations for Andrew and the patient for two weeks. (Double amputations are far more dangerous, complicated and expensive, requiring additional recovery time.)
On top of that, Andrew charges $1,000 for a single amputation, which pays for odds and ends like transportation to the airport and care for his German Shepherds while he’s gone. The income definitely doesn’t support him, but gatekeeping is his full-time job and he spends countless hours evaluating potential clients, answering questions and providing support before, during and after the procedure.
He is also a realized wannabe himself, having voluntarily amputated his left leg above the knee in Southeast Asia in 2004, among the first to do so at the time. He’d met Furth, the aforementioned psychologist who had published a book about BIID in 2000 titled AMPUTEE IDENTITY DISORDER: Information, Questions, Answers, and Recommendations About Self-demand Amputation, and after an exhaustive psychological evaluation, including questions about what age Andrew first realized he needed to be an amputee, how the condition impacted his life and how he was handling these desires, Furth determined that Andrew indeed had BIID and connected him with a surgeon to amputate his leg. (Furth, also a wannabe, longed to have his right leg amputated above the knee since early childhood, but felt he could serve the community more effectively with both legs.)
A few months after the surgery, Furth explained that he was dying from cancer and asked Andrew if he would assume the gatekeeping duties. “I agreed,” Andrew says, “because Gregg made my surgery happen in the first place, and I wanted to help others suffering from BIID. So for the last 16 years, it’s been my mission to help them find a surgical solution to their mental torture. It’s my raison d’etre.”
The process begins when a patient contacts Andrew, who conducts an evaluation via email or Skype to see if they actually have BIID, asking their age, gender, where they live and how BIID has impacted their lives. It’s a red flag if someone says they realized the need to be an amputee after puberty; Andrew assumes this to be more of a fetish, which he wants nothing to do with.
If Andrew deems the client to be BIID positive, he refers them to a medical professional to be evaluated and connects them with one of a network of overseas surgeons to schedule the amputation. He gladly accompanies them on the journey, so they’re not alone in a foreign country. He refuses to tell me where the amputations take place since the surgeons could lose their licenses if found out. “Hopefully, someday, we’ll be able to get BIID amputation surgeries in the U.S. and in Europe, but we aren’t at that point yet.”
It’s worth adding once more that most BIID sufferers deny any sexual attraction to other amputees. As Alison, a 19-year-old woman in Oregon who needs to amputate both of her arms, puts it, “If I think a woman is cute, I think she’s cute regardless of any other qualifiers. I don’t fetishize people with disabilities, and none of the dozens of people I know with BIID are attracted to people with disabilities, nor do they have erotic fantasies of themselves being disabled.” (That said, Alison does think she would be more sexually appealing without arms.) She denies that the childhood trauma she experienced — “grossly sexual” behavior from her mother — contributed to her BIID. She also was in an online “relationship” when she was 14 with someone in their late 20s who threatened to kill herself if they broke up. “Do I believe this trauma had any relationship to my BIID? Probably not,” she tells me.
“This doesn’t come from childhood trauma,” Juan agrees. “I had a normal upbringing with happy parents in a healthy marriage.” Assuming BIID sufferers must be a product of childhood trauma is reflective of a deeply ingrained bias toward able-bodiedness, corrects Clive Baldwin, a professor of social work and narrative studies at St. Thomas University in Canada, who has been studying 53 people with BIID since 2012. “People interpret this phenomenon through the resources they already have, so we’re left with madness and badness: If you don’t want to be able-bodied, you must be mad or deficient in some way. We need to be more compassionate.”
Despite First’s efforts to include the disorder in Diagnostic and Statistical Manual of Mental Disorders (DSM–5), BIID hasn’t yet been added, though it’s mentioned in the appendices and will be included in the 11th revision of the World Health Organization’s International Classification of Diseases as “Body Integrity Dysphoria” (listed in the “Disorders of Bodily Distress or Bodily Experience” section, not the “Body Dysmorphia” section).
“BIID should be distinguished from Body Dysmorphic Disorder (BDD),” explains Alexandre Baril, assistant professor at the University of Ottawa and one of the most published scholars on the condition. “With BIID, the subject doesn’t see the concerned limb as ugly, they just have the feeling it isn’t truly belonging to their body. While in BDD, all parts of the body come into question, BIID wishes are mostly legs and arms.”
BIID falls under the umbrella of transableism, which refers to the desire to acquire a disability through choice rather than happenstance. The current thinking, based on studies undertaken by neuroscientist Paul McGeoch of the Center for Brain and Cognition at the University of California, San Diego, is that BIID is a neurological condition in which neurons in the brain don’t work properly, and as a result, the mental map of the body and the physical body don’t align, causing severe distress.
McGeoch recruited four BIID sufferers seeking leg amputation (i.e., apotemnophiles), and then prodded the affected limb while recording their brain activity using magnetoencephalography (i.e., a non-invasive technique for investigating brain activity on a millisecond-by-millisecond basis) that shows where in the brain activity is being produced. “They went in the scanner, and we tapped their feet and thighs with a fiber-optic probe that allowed the scanner to capture exactly when they were touched,” McGeoch tells me. In the three apotemnophiles who wanted one leg amputated, tapping the unaffected leg evoked a response in the right parietal lobe (in which we hold our body map) but tapping the affected leg did not. In the fourth apotemnophile, who sought amputation of both legs, neither evoked a response.
McGeoch resolved that the desire to amputate a limb is likely a neurological developmental disorder of body image. “Basically, their body functions as able-bodied, but their mental map indicates that their body doesn’t have, for example, the left leg below the knee,” agrees Baldwin, who says that nearly all the BIID amputees he’s studied report the limb in question “just shouldn’t be there.” “Imagine waking up with a third arm,” he describes. “You’d look at it and think, What the hell?”
In the 10 years he’s been studying individuals with BIID, Baldwin hasn’t met one person who regretted modifying his or her body and says there are no such reports in the medical literature. “Those acting on BIID desires all feel relieved, empowered, self-confident and true to themselves,” Baldwin explains. “Paradoxically, for most with BIID, a physical disability is empowering.”
Andrew, the gatekeeper, says the only regret shared by him and his clients is that “we weren’t able to amputate sooner. Once the offending limb(s) are gone, the BIID mental torture is over and we are finally free.”
There are, unsurprisingly, some critics in the disabled community. “Transability has virtually nothing to do with disability,” writes Rob J. Quinn, an anti-ableism advocate and author of I’m Not Here to Inspire You: Essays on Disability From a Regular Guy Living With Cerebral Palsy. “They aren’t truly disabled,” agrees director-writer and consultant Dominick Evans, who is trans, queer, disabled and wheelchair-bound. “They aren’t deserving of the title of ‘person with a disability.’ I don’t accept them into my community because they are fakers, liars, deranged, worthless, hopeless, messed-up jerk-offs and losers. I want nothing to do with them.”
Others, like triple amputee John Morris, host of the site WheelchairTravel.org, welcome realized wannabes into a world he proudly says is more accessible than ever. “Individuals who pursue an elective amputation as a result of Body Integrity Identity Disorder will greatly benefit from the accessibility that has been won by the tireless efforts of disabled advocates over many decades,” he tells me.
“I’m not a hater of transabled people,” adds Bethany Stevens, clinical instructor and policy analyst at the Center for Leadership in Disability at Georgia State University. “[BIID sufferers] aren’t well-liked among many in this community because it’s presumed that they only want pity and coddling, are taking benefits away from other disabled people and get to decide when they want to be disabled. But they certainly have a body dysmorphia issue, which is a mental health disability, so they are in our community. I don’t think it’s me who gets to be the arbiter of disability identity.”
There are, it should be noted, limits as to how far realized wannabes can go. For instance, there’s only been one double above-knee amputation performed on Andrew’s watch, due to limitations on what his surgeons will perform. And triple and quadruple amputations are completely off the table, as is amputating both arms. The same goes for paralysis from the waist down, as Andrew knows of no surgeon in the world who will accommodate a C-2 complete paraplegic surgery (severing the spinal cord). “I can’t envision a time when that kind of surgery would be available, because it’s too risky and the client would require lifelong assistance,” he tells me. “My surgeons won’t do any surgery that would require the client to be totally dependent on someone else caring for them.”
That’s a tragedy for Diana, a fiftysomething wife and mother of two with a graduate degree in public health. Asked as a little girl to draw pictures of what she wanted to be when she grew up, she imagined herself as a paralyzed princess in a power chair. And for as long as she can remember, she’s felt that she should be unable to move or feel her body from the neck down, shrug her shoulders or breathe independently. She aspirationally envisions herself relegated to a power wheelchair, partially tilted back, with her arms and hands resting motionless in trough armrests, a tracheostomy connected to the ventilator on the back of her chair via plastic tubes.
She thinks about this “every hour of every day.”
“I would accept living in a nursing home as a possible outcome,” Diana says. “That would be tough, but at least I’d be in the right body.” The more Diana’s husband realizes her BIID isn’t a temporary phase, the more he hates it, urging her to suppress it even if it leads to severe depression. “He’s said he prefers me to commit suicide than get the body I need, so this will likely be the end of our marriage,” she continues, which is why Andrew also asks if his clients are married and if their partners have signed off. “Unfortunately, I’ve watched BIID destroy many marriages,” he says.
For now, Diana makes do by pretending to be incapable of movement and hooked up to a ventilator. Roleplaying also means engaging with a devotee partner. The interaction takes place via text or, less commonly, voice chat, though occasionally she’ll roleplay with a partner in Second Life. “I have a friend who will help me try out being on a ventilator with endotracheal intubation while conscious,” she says, adding that when she pretends, she stops breathing and has a strong urge not to start up again. “I might get a tracheostomy so I can really be attached to a ventilator, seeing that it’s a reversible procedure.”
Given how unanimously happier BIID sufferers are following their desired disabling procedure, Costandi, First and others contend that the most compassionate thing to do may be to allow them to go through with it. “Virtually everyone I’ve spoken to who’s completed an amputation is now living a normal life and is no longer obsessed with this,” First says. As for that pesky Hippocratic Oath that pledges to do no harm, First contends that the mantra depends on interpretation. “If you believe that having a limb is harmful, then an amputation does no harm,” he argues.
Presumably, Sofi used a similar line of reasoning in 2017 when the courier delivered two additional polystyrene boxes of dry ice pellets, midday. She’d been chatting with someone online who had successfully frozen his left leg below the knee and suggested numbing the leg first with ice-cold water. After two hours and eight minutes (the length of Indiana Jones and the Last Crusade, which she watched in an armchair while guzzling Jack Daniel’s), her feet were sufficiently numb. She swaddled them in Saran Wrap and slipped on a pair of flight socks, pausing briefly to be sure she wanted to go through with it.
The pellets fizzed and crackled upon meeting her pale white feet; her lips curled in delight as the smoky cauldron bubbled. After a couple of hours of “unbridled power and control, almost like a celebration,” Sofi removed what looked like “frozen chicken” from the bowl, and had to pee. Her frozen toes “clanked” against the hardwood floor as she crawled to the bathroom and she “feared they were going to snap right off! But it didn’t matter, I knew my feet were gone forever.”
A few hours later, she called an ambulance, calmly repeating to the dispatcher that she had, in fact, voluntarily frozen her feet to death. When the ambulance arrived, deeply confused paramedics were a “a bit creeped out.”
By the time she got to the hospital, her feet had already begun to thaw, sending thunderous jolts of pain up her spine. The on-call psychiatrist sectioned her immediately, prohibiting her from leaving the hospital or making decisions about her treatment. (Sofi is estranged from her parents, but did call her younger sister, who was “surprisingly understanding.”)
For a week, the surgical team resisted amputation, but by then, Sofi’s feet had turned black and she’d become septic, which felt “really, really awful.” Mostly, though, she was frustrated that the surgery had been delayed. As the pain worsened and her fever crept dangerously high, doctors eventually relented and executed a bilateral, below-the-knee amputation. Sofi recalls being “so relieved,” and also “a little afraid of dying.” “There was no turning back, though,” she says. “In a few days, I was going to be complete.”
Three years later, Sofi says she’s never been happier, giddily describing her collection of prosthetic legs as if it’s Carrie Bradshaw’s shoe closet: “…and then I have one pair with pink sparkly sockets and another with black with carbon fiber. I even have a pair of ‘wet’ legs, to wear in the shower or down the beach!”
She asks that I try to understand that the BIID community is neither delusional nor insane. “Outside of this condition, I’m quite a normal woman,” she says — one with a job, a significant other and her own place to live.
“We’re really not so fucked up,” she continues. “I wish I was born normally like you, but please remember we didn’t choose to be like this. It’s a burden we have to carry with us our whole lives, and for most of us, it’s a matter of life and death.”