Desperate for a Disability?: A Probing Look at Body Integrity Identity Disorder

Hello, readers,

The signs of an ever-approaching Halloween are everywhere. Stores are packed with all sorts of candy, kids and adults alike are picking out costumes, and our televisions are airing classics on various levels of scary, from It’s the Great Pumpkin, Charlie Brown to the absolutely spine-chilling The Exorcist or Rosemary’s Baby. I never watched those last two–didn’t have to. The previews were more than enough, thanks very much.

I’ve never enjoyed being scared. But I do love to be intrigued, and sometimes, a dash of fright comes with that. For example, as an armchair psychologist, I sometimes like to delve into what we call “abnormal psychology.” This involves mental illness and rare disorders, among other phenomena. Just yesterday, I caught an hour-long documentary dedicated to four rare psychological/psychiatric disorders, entitled Broken Minds. The featured disorders included a condition in which vision is psychologically affected (Alice in Wonderland Syndrome, where the person feels objects around him or her are perpetually distorted), Cotard Syndrome (a condition in which the person believes he or she is fading from existence or even dead), and a condition in which people literally lose years of their lives from amnesia, without ever experiencing amnesia-inducing trauma.

All these conditions are both intriguing and scary, in a “What would I do if this were me’ sort of way. But the one that intrigued me most is called Body Integrity Identity Disorder (BIID). I had never heard of it to that point. Basically, it is a condition in which a person believes that one of his or her four main limbs does not belong to them. According to biid.org, it is almost as if the limb is “alien.” Therefore, the person doesn’t want it. He or she believes that in order to feel “whole” or “right,” the offending limb must be removed. Broken Minds provides the profile of a physician, Robert D., who believed this about his left leg. Since the age of seven, he had believed he was meant to be a left-leg amputee. After a long comprehensive psychological evaluation, plus years of thought and meditation, Robert concluded he must have his leg amputated to feel whole. Unfortunately, as with most, if not all, cases of BIID, Robert’s limb was healthy. No doctor in the U.S. would, or even legally could, perform an amputation without a valid medical reason. Robert had to travel to the Third World to have the leg removed.

When I looked up BIID on biid.org, I also found that even though most people with this condition desire to be amputees, the disorder can “extend to a desire to be blind, deaf, or [have] any other disability.” Some people will purposely injure themselves so they medically need an amputation. I don’t know what one does if his or her BIID results in a desire to be blind or deaf, or have another disability. But the whole phenomenon of this disorder made me think of a host of new things. The first thought that occurred to me was: Wow. In a society that shuns and marginalizes people with disabilities as “abnormal” or “broken,” there are people who actually want disabilities! Furthermore, they’ll go to great, self-injuring lengths to obtain them.

After the “wow” factor wore off–after all, these people seemed to think in a radically different way than most of us–I had to deal with other thoughts. Thoughts such as, Well, if I personally believe disability is natural, and want other people to see it as such, should I applaud those with BIID? Should I encourage the mental health community to leave these people alone, because they see disability as not only normal, but desirable? This turned into, No, wait a minute. This is different. The people with BIID don’t have disabilities in a “natural” way–they weren’t born with them, nor did they acquire them in ways that might “naturally” lead to disability, such as losing a limb, an appendage, or a sense in combat. These people hurt themselves, on purpose, to get what they want, and isn’t that selfish?

Then I thought of how my stance on the BIID issue could affect my stance on other issues. For example, as a Christian, I love homosexuals and feel compassion for them, as well as anyone else who has conflict with sexual or gender identity. But my faith will not allow me to condone LGBT sexual behavior. So, I wondered, would it make me a hypocrite to “condone” BIID, just because I am a woman with a disability? And, if disability is a civil rights issue, which I also believe, what’s so different about wanting a disability from say, wanting a different skin color? Wanting to convert to a new faith? Even wanting a new gender identity–because there are those who do trample on rights of the LGBT community–the rights to live in dignity, without fear of being abused, and the right to live in society without having the LGBT label define them as people.

As you can tell, this BIID question had my brain in a knot. On the one hand, I so wanted to condone the actions of the people who have it, because as I said, they view disability as desirable, not just normal. But on the other, we don’t always get what we want, and sometimes, having what we want can be harmful for us. There’s the rub, as Hamlet would say (another Halloween nod, since the Danish prince’s troubles began with seeing his father’s ghost).

So, what conclusions did I come to? What conclusions can the community of people with disabilities come to? What can we learn from this? I’m going to share with you, but as one of my favorite Bible teachers, Beth Moore, says, please write my opinions down in pencil, not permanent ink. Meaning, these are opinions, not truths set in stone. Here we go:

  1. BIID is a psychological/psychiatric disorder. Therefore, in its own way, BIID is its own kind of disability. Remember, the person with BIID does not come by disability by “natural” means. The fact that they would choose to put their bodies and health at risk qualifies BIID as a psychological disability, like OCD or bipolar disorder, that can benefit from treatment so the person can cope with the desire to have a disability.
  2. The person with BIID, just like anybody else with a disability of any kind, deserves to be treated with respect. They should be defined as a person, not as a label. They should receive treatment in a “natural” form–that is, they shouldn’t be forced to keep their disorder secret because others would shame them. They shouldn’t be consigned to mental facilities unless they are a violent danger to themselves or others (i.e., trying to run themselves over with vehicles, trying to gouge eyes out, whatever). Even then, I don’t believe these people should be institutionalized permanently, shut away from society. Why? Because we usually don’t do that to people with other disorders and disabilities! The fact that the person with BIID will hurt him or herself to obtain a disability is not strictly natural. The fact that this person has a disability, or even desires one, can be called natural.
  3. The idea that someone would want a disability is not “insane.” At least, it shouldn’t be. The mainstream culture would look at someone with BIID and say, “That’s insane,” because they see how amputees and people with other disabilities often live. Their lives are monitored, they are shut out from activities they want to do, they are seen as “other,” or pitiable–who wants that? Nobody–but that says less about the person with BIID than it does about disability and how we view it. If we could view disability as natural, maybe we would stop viewing the desire for one as slightly, or even wholly, insane. See the rest of the blog for details. (Note: sometimes the desire for a disability can come from other psychological issues, such as a belief that having a disability would result in love and care from family or other loved ones. In that case, the person with BIID needs even more compassion and understanding, and perhaps a different “angle” of treatment).
  4. People with BIID can teach us about disability in a new way. As I said, someone who desires a disability thinks much differently than the mainstream culture does, and that can be a good thing. I believe people with this condition can teach us a lot–the things detailed in #3, for instance. But they can also teach us that behind every disability is a person, reaching out for not only our help, but also our friendship, acceptance, or respect.

People with BIID, other disorders, and other disabilities are all around us, saying, “Please see behind this mask. Don’t be scared of me.” This Halloween, instead of running scared, let’s invite people with all kinds of disabilities to the party.

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5 thoughts on “Desperate for a Disability?: A Probing Look at Body Integrity Identity Disorder

  1. Hi there! I have two things to say. First, I think your writing is very interesting, and I’m glad to see a voice trying to bring some visibility to a segment of the population that is often overlooked or disregarded. I’m impressed!

    I have a question. You mention that your faith “does not allow you to condone LGBT sexual behavior.” I’m not interested in arguing whether or not homosexuality or transgenderism is or is not morally right. What confuses me is the word “condone” which generally means “to permit; to disregard; to turn a blind eye to; to allow to happen.” This word is very familiar to me as homosexual woman and it is frankly quite troubling at times. “I do not condone this” implies a need for prevention. I think many people who use the word do not necessarily intend to indicate direct intervention against gays and lesbians or transgender people to prevent their behavior, but the rhetoric certainly bolsters those that do and has often been used by them. I am simply making a case here for using some different language to avoid giving a message that you do not intend (I am assuming based on the rest of your paragraph that you did not intend this).

    With that aside, you draw an interesting parallel between BIID and transgenderism and homosexuality. I have heard others bring this disorder up to indicate that we should continue to classify homosexuality and transgenderism as mental disorders. If we consider it a disorder to wish to amputate a limb out of the conviction that it isn’t your limb, shouldn’t we consider it a disorder to wish to change your sex out of the conviction that it isn’t your gender? Shouldn’t we consider it a disorder to wish to have sex with individuals that are the same sex as you out of the conviction that you are attracted to them?

    I see two distinct differences here. First, as I understand it, therapy for BIID has proven to be fairly effective in allowing the person to live a fulfilling life without having to lose portions of their body. The same cannot be said of therapy to “fix” transgender or homosexual people. Indeed, attempts to change sexuality and gender generally result in harmful side effects, while openness to sexuality and gender expression generally leads to good outcomes for homosexual and transgender individuals (this is in general, of course. No two individuals are the same). This has been rigorously tested by our often-abusive mental health history in the US and other countries.

    Secondly, homosexual behavior or transgender identities are not physically harmful to the individual and does not generally impede them from living healthy, normal lives. The same cannot be said of amputation. Some would argue that sex change is indeed harmful to the individual because it causes infertility and, for some (not all), involves surgery. However, infertility is not considered disabling to an individual if that individual is not interested in having biological children. Homosexual behavior is not harmful to the individual at all (so long as safe-sex practices are followed, as with any form of sex) and we must also remember that “homosexual” refers to relationship preferences, not just sex. Homosexual relationships are certainly not harmful to the individual, and are often fulfilling and wonderful (I am lucky enough to be getting married to by wonderful partner next Spring!!) As such, the comparison between BIID and transgenderism/homosexuality is interesting, but ultimately I think they are not the same. I’d love to hear your thoughts!

    Yeah… long comment is long. Sorry about that!

    1. My…that is plenty to think about! I may not agree with homosexuality/LGBT marriage, what have you. But I would never say to a person of LGBT persuasion, “You should be forced to get psychological help and your condition should be prevented and/or abused out of you.” Forcing someone to get help when they don’t want it would be like me trying to force someone to convert to Christianity. I may believe wholeheartedly in it. I may think you need it (or Him, since the central part of Christianity is Jesus, rather). We may even talk about your need or lack of need. But at the end of the day, you (and I’m using “you” in general here) have to decide, and if you decide you don’t want what I offer, whether that’s Christianity, a certain job, a certain political view, even a chocolate bar–then that’s your business. It’s not up to me to force it down your throat.

      Yes, I do understand that BIID and LGBT are not the same in many ways. Please bear with me. I’m a very intellectual woman who is also quite new to the BIID phenomenon. I also have some conservative Christian readers/followers who, if they saw me applaud BIID, would then ask if I agreed with some of the stances of the LGBT community. (I guess I should have used “agreed with” rather than “condone” or “approve.”) I’ve found that when one comes across something new, upon which one feels compelled to make a stand, it can be hard to make that fit with the other issues on which that person has already made a decision. Whether an LGBT lifestyle is harmful, I don’t personally know. I’ve never lived one, and unfortunately, the few I know who do (with whom I have very close ties) have been hostile and condescending to both me and my family, to the point of refusing to associate with us even though we’ve asked to be able to “agree to disagree.” What I can agree with you on is that having a lifestyle like this is probably far less likely to harm you than purposely amputating a limb. I’m tempted to classify BIID, not only as a disability, but also as a form of self-injury, like cutting. The only reason I wouldn’t is because some people with the disorder do not amputate, and again, the fact that they have the disorder in the first place is a lot more natural than crazy. (Just as I would never say a person who’s LGBT is crazy; you have your reasons for coming to the gender identity conclusion that you have. Whether I agree with the outcome or find said outcome “natural” is up for debate, but I do think it’s natural to question, yes, I’m a male or female. However, does that mean I should act a certain way?) For example, I have never gotten over this gem of a double standard: if a girl likes sports and roughhousing, she’s a tomboy, and that’s acceptable. But if a boy is sensitive, artistic, or not “classically male,” he’s somehow destined to be gay? I think not.

      Anyway, do come back again and keep talking. Also, sincere congratulations to you and your partner–I’m sure you will be happy.

      1. I couldn’t agree more with that funny double-standard on men and women. Men’s appropriate gender roles are much more strictly defined in most American culture than women’s (although I was raised in a hyper-conservative church that generally expected women to be demure, quiet, not have a career, and always defer to men, so the double-standard is not universal). Thank goodness my parents were a good bit more progress-minded and felt I should be able to go to college and have a career! Besides, it is frustrating to me that in this day and age, people still confuse sexuality with gender expression. That is, if a boy is acting “stereotypically feminine” then he must be gay and if he is acting “stereotypically masculine” he must be straight. They may be stereotypes for a reason, but they are far from universal. Similarly, I in many ways fit the stereotype of a butch lesbian, but my partner is extremely “feminine” in her appearance, interests, and mannerisms. In the end, people are just people and sometimes we fall in love with men or women.

        I just also want to add that I appreciate your openmindedness when it comes to judging whether or not LGBT lifestyles are harmful. So many people are quick to tell me what is good for my life without even knowing anything except the gender of my partner. I am firmly of the belief that, unless you’ve lived someone’s life, you shouldn’t assume you have all the answers for them or that you know what is best for them. We all have our beliefs and those are good. They shape the way we see the world and understand it. But a major part of respect is agreeing together that I should not assume that what is good for me is good for you, and vice versa. I appreciate that respect from you and I hope I have offered it equally back. Thanks for your response!

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