“Why Would Anyone Want to Be [More] Disabled?” Abivalent, Yet Able to Identify: My Own Conflicted Relationship With My “Able-Bodied” Side and the Strange Case of Dr. Chloe Jennings-White’s Distorted Body Image
By Ken K. Gourdin
Today’s Salt Lake Tribune presents the fascinating case of Dr. Chloe Jennings-White, who suffers from the proposed1 Body Integrity Identity Disorder, in which sufferers allegedly feel that a limb (for example) is not meant to be a part of their bodies, and that they’d prefer to be a paraplegic or an amputee.2
Dr. White reportedly has found a physician who is willing to perform a procedure which would paralyze her (at least, it would paralyze her left leg, which is the locus of her psychiatric condition, by severing her femoral and sciatic nerves. Apparently, other medical doctors are unwilling to touch Dr. White’s case with a ten-foot pole, and it’s not hard to understand why: perhaps the first rule of ethics in medicine is the Hippocratic Oath’s edict, “First, do no harm.” The theory under which any doctor might even consider doing what White wants done is that the psychogenic harm she suffers from her mental condition outweighs any physical harm she would suffer if she were to have the physical procedure done. (Color me doubtful.) She uses a wheelchair and leg braces on the advice of Columbia University psychiatrist Dr. Michael First, who diagnosed her with the condition after a three-hour telephone interview in 2008.3
I. My Conflicted Relationship With My “Able-Bodied” Side – It’s difficult for anyone to need help, and it’s even more difficult for anyone who needs it to ask for it. I apologize in advance that this may sound like just so much whining: I know that a lot of disabled people would kill (or at least, they would if it weren’t illegal and immoral! Heh!) to be in my shoes, including my older brother, who’s paralyzed from the chest down. But it’s comparatively easy for people to look those who are more severely disabled than I am and quickly to determine what kind of help might be needed.
Not so in my case. Yes, my case of Cerebral Palsy is on the “mild” end of the spectrum. Yes, there are a lot of things I can do for myself. Yes, I am fiercely independent—and I would like to be even more so, if-and-when my resources allow. Yes, I have a “can-do” spirit, or at least a “why-not-try-it?” spirit. Yes, I sometimes become annoyed (at least inwardly) when I think someone is being overly and needlessly solicitous of my welfare. Yes, I’ve got it—and I’ve had it—good. No, I shouldn’t be allowed to “con” or to “guilt” people into doing things for me that I can do for myself. No, I shouldn’t be allowed to feel sorry for myself or to persuade others to feel sorry for me. (And the overwhelming majority of the time, I would never dream of trying to do these things!)
But dang, being “almost” disabled, or being disabled to a relatively small degree, or having people size you up and conclude that you don’t need any help—that you never need any help because of all of the caveats contained in the foregoing paragraph—is lonely sometimes. It’s frustrating. And what do you do with the loneliness and frustration if, whenever you try to give a voice to it, people (implicitly or explicitly, and wittingly or not) conclude that you’re malingering, you’re making excuses, you just don’t know (or won’t admit) how fortunate—how blessed, although I hesitate to use that term because of the danger of implying that someone in a worse situation somehow is “cursed,” which is not the case—you really are?
Sometimes, it seems as though everywhere I turn (or might turn) for help, the resources and services offered by a particular organization—whether it be United Cerebral Palsy, or the National Institute on Neurological Disorders and Stroke, or the National Ability Center, or [Insert-Organization’s-Name-Here]—aren’t meant for someone in “my situation,” whatever the hell that’s supposed to mean! (Pardon my French! Heh!) It seems as though there are groups out there for people in every situation—for example, transvestite, homosexual, formerly-drug-addicted, amputee, red-headed war veterans: make the organization’s name a portmanteau and call it THOFODAARWAVES—but mine. I desperately need an advocate and/or a mentor, but given the fact that I’ve been looking for one of those since my undergraduate days eighteen years ago and that people often make the assumptions of which I’ve written above, I’m not holding my breath! I see the ads for Visiting Angels, a business which provides assistance to the elderly to enable them to live independently in their homes and think, “Well, I’m not old enough and/or couldn’t afford it—maybe in 20 years!”
II. How and Why I Might Be Able to Identify (At Least to a Small Degree) With White – As someone with both a psychiatric diagnosis (and a long-and-complicated psychiatric history) and a physical disability my reaction to cases such as Dr. White’s is . . . complicated, to say the least! I have a certain amount of sympathy for her because—while I would never compare our respective maladies—I have received a psychiatric diagnosis myself; yet, on the other hand, as a person who also has a physical disability, I also sympathize with her detractors who feel that her “desire” to be disabled (if that’s the right word for it) cheapens their struggles. As a layperson, I would never pretend to be able to understand the psychological underpinnings of Body Dysmorphic Disorder, or of the proposed Body Integration Identity Disorder.
Conversely, as a person with a physical disability, I understand the bewilderment of those who are disabled through no fault of their own when confronted with this woman’s story. Indeed, certain things she says sound awfully perverse, even to my “not-so-disabled ear,” for instance: “I guess I’m kind of conservative in the sense of not wanting to make myself any more disabled than is absolutely necessary for my sense of wellbeing.” While, as I will discuss below, a certain strain of thought views disabilities as simply another physical characteristic, this is the first time I can recall ever having seen them equated with wellbeing. On the other hand, as a person with a psychiatric diagnosis, I also understand, at least to a small degree, why someone might want to externalize the often-enormous psychological pain inherent to such a diagnosis by manifesting such pain physically, even if doing so means injuring or disfiguring oneself.
And having experienced a fair amount of both psychological and physical pain, I can tell you that physical challenges (as grave as they might be) are far less intractable than psychological ones: give me a good, old-fashioned physical challenge any day! Tell me I have a serious condition which is only correctable through performing a complex operation, which will entail a long and difficult recovery regimen. Hell, tell me you have to completely whack off a limb—and I’ll handle that better than I have handled (and maybe even better than I am handling) some of my more-intractable, difficult-to-treat and difficult-to-cope-with mental and emotional challenges.
Having discussed how alone I sometimes feel, I can say is that the desire to evoke sympathy (although such a desire may only play a small role in psychiatric disorders which result in physical consequences) is an extremely powerful motivator; and that physical pain, with an external cause—whether it be one’s own or someone else’s—oftentimes is much, much easier to deal with than internally-caused psychological pain. I suspect that these two things play no small part in disorders like Munschausen’s Syndrome (in which people do physical injury to themselves, at least in part in an effort to garner sympathy), Munschausen’s By Proxy (in which the injury is done to someone else), and in such psychological symptoms as “cutting” in which people do injury to themselves—wittingly or not, I think, to draw attention to psychological pain which others (including those closest to them) might be overlooking.
Complicating matters is the fact that while many people with disabilities they did not choose resent Dr. White for her apparent desire (whatever its source) to choose to be one of them, conversely, there is a certain strain of thought among at least a segment of the disabled that there is nothing “wrong” with them—that too many regard disabilities as something to be prevented or avoided if at all possible, when, in fact, all they really are is another physical characteristic, like having red hair or being left-handed. While this strain of thought perhaps is more prevalent among the deaf and the blind than those with “physical” disabilities perhaps it’s not unheard of even among the last-named group. Would I “give up” my disability if I had the chance? I’m not sure. While I’m ambivalent about the notion that my disability, itself, might be a part of my identity (especially since it’s a tenet of my religious faith that it will eventually be overcome see Alma 11:42-44 in The Book of Mormon, available here [last accessed today]), I cannot deny the effects (some, perhaps, negative, but many positive) it has had on my personality:
One of the major themes of the play Flowers for Algernon, in which a man of low intelligence undergoes an operation which turns him into a genius only for the effect to be reversed by the end of the play, is that “all that glitters isn’t gold”: while having low intelligence might not be desirable in (perhaps) many ways, having one’s fortunes in that regard suddenly reversed carries with it its own potential pitfalls. As grateful as I will be to one day have my disability-related physical burdens lifted, I’m not naïve enough to think that a sudden reversal of fortune wouldn’t carry with it its own set of peculiar challenges. And there’s no denying that my disability has been my tutor, and has taught me things that perhaps I could have learned in no other way. As I have written elsewhere:
I used to waste my time trying to convince people to accept me in spite of my handicap. Now I want people to accept me handicap and all because without it I wouldn’t be the person I am today. Being confined at home for months at a time [following surgery] gave me two choices: one, allow the fact that I couldn’t participate in physical activities to drive me crazy, or two, [ ] shift my focus from my physical development to my mental, emotional, and spiritual development. Because I chose the latter, I am a more articulate, empathetic human being. My handicap has taught me a great deal that I wouldn’t have learned otherwise, such as empathy for the struggles of others and perseverance in the face of obstacles.4
Bottom line? More often than not, perhaps the intent (at least in part) of people who harm themselves (or of people who would be harmed, such as Dr. White) is to externalize and “physicalize” internal (often severe) emotional pain. While the coping mechanism is maladaptive, that doesn’t mean the pain—or the relief once the pain is physically manifested and thereby, perhaps, psychologically “released,” at least to a certain degree—is any less real. Indeed, while I lack a reference, relief is the often-reported post-behavior emotion of those who engage in “cutting.”
1 I say “proposed” because this disorder is not yet in the Diagnostic and Statistical Manual of Mental Disorders, the manual which contains the crieteria for diagnosing recognized mental disorders.
2 Matt Piper and Kristin Moulton (July 20, 2013), “Therapeutic or barbaric? Utah woman wants doctors to paralyze her,” The Salt Lake Tribune, accessed on line at http://www.sltrib.com/sltrib/news/56614675-78/says-jennings-biid-paralyzed.html.csp?page=1 on July 20, 2013.
3 While it’s not unheard of for professionals to provide therapeutic intervention over the phone (at least, to already-diagnosed patients) I find the notion of diagnosing someone over the phone (no matter how long the interview) to be suspect, particularly when it comes to the diagnosis of such a complicated (proposed) disorder as this. A history and physical examination often is an important diagnostic component even for psychiatric diagnoses, because such diagnoses can have physical components—and even physical causes.
4 Ken K. Gourdin (2003), My Story: Lots of Good, Some Bad, and a Little Ugly in the First 32 Years (Collierville, Tenn: Instantpublisher.com) 166.