BIID: On wanting a disability
January 9, 2012 at 12:42 pmChristina
(Christina here…)
Derek and I breezed through Forest Park in St. Louis single file, enjoying the crisp fall air. Among the sounds of leaves blowing in the wind and far off conversations, we added my wedding ring clinking against metal, and the dry hollow noise of handrims gliding through hands. Our wheels crunched the loose asphalt softly underchair, our view of the world a rolling panoramic dolly shot.
One of Derek’s greatest joys in life is the ability to wheel through Forest Park for hours, until his arms burn and turn to jelly. He uses a wheelchair because he has paraplegia,the result of standing in the line of crossfire during a drive-by in north city ten years ago.
Derek ribs me if he eversees me on foot; “You belong in your wheelchair. Where did you put it today? I better not see you walking again!” I laugh. The way he sees it, more wheelers in the world means more impact on our ability to convince people of the need foraccommodation.
At another place and time, Thomas (a different friend) and I weave pastmall booths at closing, the sound of shutting security doors echoing behind us. We have something the few lingering shoppers lack – the beauty, grace and speed of wheels. We’ve spent the whole day pushing around various places in St. Louis, in what Thomas would later describe as one of the most meaningful and important days of his life as a wheelchair user, two years after his accident.
Me with my chair. Photo by Wexy.
I’m a biomechanics researcher and an occupational therapist. I specialize in wheelchair mobility, analyzing propulsion – how the way people push their wheelchairs impact the structure of their arms. I also study disability itself; what it means for a person who has one, how the environment impacts people’s abilities, etc.
I do not have a disability that necessitates the use of a wheelchair. Yet I have a wheelchair. Most of the time, it hangs out in my basement, loaded in my car, or at my research lab. I use the wheelchair as a tool: tweaking it to fit me like a glove taught me a lot about how to tweak chairs to fit others. Pushing around the streets of St. Louis taught me a lot about the importance of being able to hop curbs when you can’t find a curb cut. I will never claim to know what it means to have a disability – but I know what it means to learn advanced wheelchair skills.
I brought it out once for a twenty-something homecare client of mine. He was unable to push up the ramp to his house. He believed that no one in a wheelchair could push up the ramp. I walked to the car, assembled my wheelchair, hopped in, wheeled to the ramp, and pushed up it. His jaw dropped. He couldn’t believe a girl had shown him up.
Three weeks later, he had built up enough strength and balance to push up the ramp himself.
People use wheelchairs for many different purposes. My purpose is uncontroversial, if unconventional.
However, others use a wheelchair for more… controversial reasons: One group of such people have Body Integrity Identity Disorder (BIID).
Body Integrity Identity Disorder, or BIID, is a condition characterised by an overwhelming need to align one’s physical body with one’s body image. This body image includes an impairment (some say disability), most often an amputation of one or more limbs, or paralysis, deafness, blindness, or other conditions. In other words, people suffering from BIID don’t feel complete unless they become amputees, paraplegic, deaf, blind or have other “disabling” conditions.
Photo by Wexy.
BIID isn’t a simpledesirefor a different body. People with it don’t desire to change their bodies in the same way that we might desire a pizza, or an iPad, or a nose job. Their need crushes them, agonizes them, to the point where their thoughts impair their ability to function in their day-to-day lives. They frequently suffer from depression, depersonalization, and will sometimes go to deadly lengths to alter their bodies to fit their image of themselves – think “train tracks”. Some people have cut off their limbs with circular saws or frozen them in dry ice, forcing doctors to amputate. Others blast their ears with foghorns while in their car on their way to work to cause hearing loss. Still more will pretend they have a disability in private, tying up their limbs, stuffing their ears with cotton, using a wheelchair, etc. Some live the life of a person with a physical disability despite having none, such as Chloe, featured in a recent episode of the National Geographic showTaboo. Many of them feel shameful of their need, and so they hide.
Talk to them about anything else and they appear typical. They lack psychosis. Most are white, male, educated, and middle class or higher. Why would a person want this? For most, “why” is a nonsensical question – like asking someone why they are gay. But others without BIID can’t help but try to find a reason.
Many people conclude that people with BIID merely seek attention, pity, or some other “perk”. The question I always ask in response: what does that idea say about your perception of people with disabilities that you think someone who wants one must want one out of a need for pity or attention/some perk?
Others simply feelsickened, recalling the ways in which they or someone close to them adapted (or didn’t adapt) to a disabling condition.They rationalize, “People like you give people who have had actual injures they did not do anything to attain a bad name.” Maybe so, but then people who injured themselves doing something reckless like driving drunk and smashing into a tree give a bad name to people who are injured through no fault of their own.People rationalizethat a person with a desire for physical impairment must be naive, living in a fantasyland where they romanticize disability as a great triumph over adversary. But you could say the same thing about transgendered people – that they romanticize being the other sex. Others say that the social knowledge that some people pretend to have a disability or desire a disability causes damage to people who have physical impairments not borne out of a need or desire. After all, people don’t like to be “fooled”. They don’t like the uncertainty of knowing that some people who use wheelchairs have no physical impairment, and that you can’t always tell who is who.
Many of the arguments against BIID parallel those arguments against being transgendered.
Other people, like myself and a few scant neurologists and psychologists out there, seek to understand, rather than demonize or judge.
Due to my own research, I’ve made several friends who have BIID. One friend, Nebraska, cut off all of his toes of one foot. He walks with a barely noticeable limp and experiences phantom limb pains. Many of his friends have no idea. His family does not know – he keeps his shoes on when he visits them. The removal of his toes brought him happiness and a feeling of completeness. Nebraska’s certainly not a burden on society, not seeking pity, attention nor perks. He describes his decision here:
When I amputated my toes, it felt like I removed the part of me that was causing all of my anger, frustration and anxiety. It’s not that I felt my toes were not part of me, but that I was making my body the shape and feeling that issupposed to befor me. Before I did my foot I would often stop in my tracks, no matter what I was doing, and feel a rush of feelings that kept me from focusing. I knew that I had to make my body the way I see it. Not as a disabled person with an amputation, but as an individual. It’s like I gained a part of me that I should have always had. Losing my toes made me feel whole and complete.
Nebraska loves his “stubby” foot, though one day he’d like to be a below-knee amputee. We both see beauty in asymmetry and feel attracted to uniqueness, hence our friendship.
Another friend, Charlie, rendered his feet partially paralyzed by damaging his femoral nerves. He wears ankle braces and often uses a wheelchair, but continued his job as a machinist.
Another friend feels he should have paralysis of both his legs. He uses his chair on weekends, riding the Boston subways. During the week the wheelchair serves as his desk chair at his computer. He finds using the chair therapeutic – it lowers the threshold of obsessive thoughts.
A friend with BIID (who I knew only online) and I actually ran into each other by chance last time I was at TAM. As I wandered around all of the outlandish Vegas hotels, I found myself passing a person on wheels. I can’t help but look at the way people push – just like I am sure a physical therapist who specializes in gait watches the way people walk – so my eyes immediately caught the pattern her hands made as she propelled – hand leaving the handrim at the end of the push phase and going in a small loop before dropping below the handrim, a perfect double-loop-over pattern. She noticed my eyes watching. Then she realized she knew me, turned around and shouted for me. We got to spend some time together, a welcome surprise.
Freed of the crushing battle between their ears, the people I know personally and the people I’ve read about report that they lead happier, more fulfilled lives after they adjusted their bodies to fit their perception. Not all of them lead more fulfilled lives, but most do, and they all have a rough road to travel on. But so do people who are gay or transgendered. So do atheists.
Who am I to judge their lives and tell them what they should do with their own bodies? They certainly don’t harm anybody else. Yet, my friends live in secret (I can’t even tell you their real names) because the way their brains work falls far outside the norm.
There exists a paucity of research literature on the subject of BIID. Only one psychologist/researcher, Dr. Michael First, makes the study of BIID a priority. He’s written a few papers, such as First MB, et al (2011). In that paper, he discussed the lack of evidence for therapy or medication in treating BIID. People with BIID rarely seek medical attention, thoughinternet communitieson the subject thrive. He also brings up parallels between BIID and Gender Identity Disorder.
Among disorders in the current DSM, BIID phenomenoligically appears most closely related to gender identity disorder (GID). There are a number of striking parallels between the two conditions. In both, the individual is extremely uncomfortable with aspects of his or her anatomy (genitalia and secondary sexual characteristics in GID and having four functioning limbs and a functioning body in BIID) that he or she experiences as being in conflict with his or her desired identidy (to be the opposite sex, to be disabled). In both GID and this condition, onset is in childhood or adolescence. Spending time physically pretending to have acquired the desired identity is an important feature of both (e.g., cross-dressing, pretending to be disabled). Surgical modification to bring the person’s body in line with his or her desired identity (e.g., hormone treatment and sex reassignment surgery, elective amputation ) effectively eliminates the desire and appears to ‘cure’ the disorder in at least some individuals. Finally, despite the fact that individuals with both GID and BIID seek surgical interventions to achieve the desired anatomical and functional configuration, the surgical alteration per se is not the focus of the desire but is instead a means to an end, i.e., to be able to live one’s life as either a member of the opposite sex or as an amputee or paraplegic.
Some early, preliminary research suggests BIID has root causes in parietal lobe dysfunction (Sedda, 2011) however; they used a tiny sample size (four). Despite occasional sensationalist media attention, BIID is darn rare, so finding subjects is a challenge. First MB (2004) conducted the largest study to date, completing telephone interviews of 52 subjects. You can actually read thefull study here.
**Edit: Reader Seano pointed out that Johnson AJ, et al (2011) conducted a larger internet study, though it only studied amputee wannabees. Find it hereand referenced at the bottom.**
First MB evaluated subject and found they, “appeared to have rates for both current and past psychopathology between rates generally seen in the community and rates seen in clinical samples.” So apart from their desire to alter their bodies, they are typical in terms of psychopathology.
Feeling incomplete in your own skin is by definition an emotion – an irrational abstraction. Yet, can we rationalize removing a healthy limb, or to impair oneself physically, to get relief from those irrational thoughts?
If, with certainty, I could remove thebattle in my own headby removing a limb, I would. I say that even with the fullknowledgemy profession brings to the reality of amputation.I would have no trouble making thatdecision.