Devotees, Pretenders and Wannabes: Two Cases of Factitious Disability Disorder
 Original article
Sexuality and Disability. Volume 15, Number 4 / December, 1997. pp 243-260. Available on SpringerLink
Despite having been described for more than a century, there is no understanding of the origin of the attractions, desires and behaviors of devotees, pretenders and wannabes (DPW's). Devotees are non-disabled people who are sexually attracted to people with disabilities, pretenders are non-disabled people who act as if they have a disability by using assistive devices and wannabes actually want to become disabled, sometimes going to extraordinary lengths to have a limb amputated. Two cases are presented in an effort to understand the psychology of DPW's and to suggest one psychologic concept—that of Factitious Disability Disorders—that may explain not only the obsession to be with disabled persons, but also the desire to pretend to be disabled and even the compulsion to become disabled. Also presented is a combined cognitive-behavioral approach to modify DPW's obsessions and compulsive, intrusive, illegal and sometimes self-injurious behaviors.
One of the major issues with this article is that it paints BIID sufferers in a particularly negative way. A second issue with the article is that it bundles wannabes, pretenders, and devotees together: while there certainly are similarities and relationships between each "phenomenon", we aren't ready to accept that for the purpose of defining behaviours and motivations, the three can be bundled up in such a manner. Finally, the author selected subjects for his study that are not representative of the majority of individuals with Body Integrity Identity Disorder as shown by other more extensive studies such as Dr. First's.
"Despite having been described for more than a century, there is no understanding of the origin of the attractions, desires and behaviors of devotees, pretenders and wannabes (DPW's)."
There are indeed mentions in writing about these conditions dating back quite far, more than a hundred years, but it is only recently that actual studies have been undertaken.
"to suggest one psychologic concept—that of Factitious Disability Disorders"
The concept that people who have BIID suffer from a factitious disability is erroneous. To suggest such is akin to stating that the condition is closely related to Munchausen Syndrome, something the author does later in the article. But as stated elsewhere on the site and in other studies, there is usualy no evidence of Munchausen in individuals who have BIID.
"DPW's interest in amputation has been the most frequently documented."
Most frequently documented, yes, but not, by any stretch of the imagination, the only interest.
"Cases of men and women who are attracted to amputees, who themselves want to have amputations and who have successfully become amputees have been described since 1882."
For the purpose of the discussion, we will treat the author's references of DPW as BIID sufferer.
"problematic behaviors, ranging from [...] obsessive and intrusive phone calls, letters and e-mail to persons with disabilities, [...] lurking in public places to watch, take covert pictures of, talk to and touch disabled persons, and even engaging in predatory stalking."
While there is no doubt that some individuals exhibit such behaviours (and as a result give a really bad name to everyone else), it is not, by far, the majority, and it is also not behaviour found in BIID sufferers, but more in devotees.
"I slowly and laboriously pulled myself into the wheelchair, letting my legs drag. I was eager for people to watch me, to see that my legs couldn't move. I pushed myself into the mall, again looking to see if people were watching me. I was full of emotion. I felt whole for the first time in my life."
Bruno relates what one of his patients stated, and while we can relate to this statement of I felt whole for the first time in my life, Bruno's emphasis on the attention received is deceptive. BIID is not about attention, at least not primarily.
"I was again flushed and aroused. I loved the hotel staff looking at me wheeling through the lobby."
Again, Bruno selects quotes from the patient pointing to pretending activities being merely about sexual arousal and about attention.
"I wanted to be a disabled child so I would be loved. Pretending to be disabled now that I am an adult—even if I actually became disabled—cannot make up for the love and attention my parents did not give me."
While this could be part of the reason why BIID establishes itself, it is not the sole reason. A need for attention and love from parents (or others) is not the root of the condition. If it were, talk therapies and Cognitive Behavioural Therapy would actually work to keep BIID at bay.
"However, the notion that an apotemnophile is a "disabled person trapped in a nondisabled body" is difficult to justify, there being no 'naturally-occurring' state of disability that would correspond to the the two naturally-ocurring genders."
This is an argument often made, which is hard to refute at first glance. Of course, there are numerous impairements that are congenital, and as such are 'naturally-occuring'. But the difference, in our opinion, is one of body image. Neurologists such as Ramachandran and psychologists/philosophers such as de Vignemont have written about the relationship and importance of the internal body schema to BIID.
"Riddle suggested that DPW's desires develop from a combination of a strict anti-sexual attitude in the child's household, deprivation of maternal love and parental rejection in early childhood that creates a fear for survival and a self-generated fantasy for security"
Riddle is on the wrong path here. At least as far as BIID is concerned. Our own experience and anecdotal evidence gathered in conversations with dozens of other transabled individuals shows that these elements were not present in most individuals' childhood.
"Ms. D.'s self-report suggests that deprivation of parental love, coupled with seeing her parents' positive emotional response to a disabled child, set the stage for her attraction to disabled men and her pretending to be disabled. Fortunately, Ms. D. was able to acknowledge the lack of parental love and link it to her desire to 'be disabled' and therefore lovable, an insight that markedly diminished both her attraction to disabled men and her own desire to pretend to be disabled."
It is interesting that Ms. D was able to reduce and change her attitudes just based on such realisations and basic talk therapy, considering that the every other evidence points to talk therapy being completely inneficient in treating BIID.
"Ms. W. was admitted to an inpatient psychiatric unit after having a psychotic episode. She was reported to have run down the stairs of her house and down the front walk to greet two of her friends, talking about how she and her doctor were "God.""
Talking about another patient here, Bruno describes reactions and actions of someone who started being treated for apparent Post-Polyo Syndrome. It is obvious that Ms. W. was dealing with many more issues than mere BIID, if she even had BIID to start with and not some other condition. Again, the bulk of the literature indicates that people who have BIID are not delusional, nor psychotic. Inclusion of this particular patient as a case study appears to be in poor form if the author wished to represent the reality of BIID.
"She was diagnosed as having a manic episode and was discharged on lithium, tegretol and respiridone."
More evidence that the patient was dealing with much more than BIID, and as such was not a particularly good subject for a representative study of BIID.
"If the common psychologic foundation of these conditions is that disability will satisfy unmet needs for love and attention, then there are only two factors that differentiate between devotees, pretenders, wannabes and those with a factitious physical disability: the awareness of a desire to appear or actually become disabled and physically appearing to be disabled"
That's a mighty big if. We don't buy it.
"The two factors of FDD's suggests possible treatment strategies. As Case 1 indicates, patients must first develop awareness, acknowledging the pain of not receiving the parental love and attention they desired. They must then discover that disability became a means to an end, the end being making themselves worthy of love and attention. Psychotherapeutically, pre-planned thought stopping, substitution of appropriate behaviors and introspection may help to stop disability-related obsessions and compulsions that distract from acknowledging the painful absence of parental love and may assist in identifying and meeting the individual's own needs for love and attention."
We wish it were that simple. If such approach were really effective, then there wouldn't be so much suffering from BIID. Evidence does show that therapy and/or medication do not touch BIID. Perhaps behaviours are able to be contained, or modified, but symptoms can only be suppressed, not erradicated.