Despite having been described for more 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.
Amputees; paraphilias; sexual deviations; factitious disorders; Munchausen's syndrome
Devotees, pretenders and wannabes: Two cases of Factitious Disability Disorder
Richard L. Bruno, Ph.D.
The advent of the Internet has brought to the attention of people with
disabilities individuals who had heretofore largely remained hidden:
Devotees, pretenders and wannabes (DPW's). Devotees are nondisabled
people who are sexually attracted to people with disabilities,
typically those with mobility impairments and especially amputees;
Pretenders are nondisabled people who act as if they have a disability
by using assistive devices [e.g., braces, crutches, and wheelchairs] in
private and sometimes in public, so that they 'feel' disabled or are
perceived by others as having a disability; Wannabes actually want to
become disabled, sometimes going to extraordinary lengths to have a
limb amputated. (1)
While the most common Internet bulletin boards, chat rooms and web
sites are for male devotees of female amputees, others are for male and
female, heterosexual and homosexual, plaster cast, crutch, leg, back
and neck brace and even orthodonture DPW's. (1,2) An America Online
bulletin board posting entitled "Bunion Love" requested "photos,
videos, or correspondence dealing with gals [having] deformed/crippled
feet, or toe/toes amputated . . . or who have severe bunions on their
feet. The more severe, the better."
However, the Internet is by no means providing the first information on
DPW's. Since the late 1800's the medical literature has described men
and women who are sexually attracted to amputees, those who limp, or
use crutches, braces and wheelchairs, as well as individuals who
pretend to be or who actually want to become disabled. (3-13).
DPW's interest in amputation has been the most frequently documented.
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. (3,10,11,14-17) Money (14), who has focused
on the interest in amputation, coined the terms apotemnophilia
(achieving sexual fulfillment by fantasizing about being an amputee)
and acrotomophilia (requiring amputee partners, real or in fantasy, to
achieve sexual satisfaction).
In 1983, Dixon (18) published results of the first survey of male
acrotomophiles, individuals who were customers of AMPIX, a company
providing stories about and pictures of amputees. The 195
acrotomophiles were college educated, professional, white males, 75% of
whom had been aware of their interest in amputees by age 15. Although
55% of respondents had dated amputees and 40% had had sex with an
amputee, only 5% had married an amputee. Fifty-three percent of the
respondents had pretended to be an amputee (11% having done so
publicly) and 71% had fantasized about being an amputee, indicating
that the majority of devotees were also pretenders and wannabes.
Consistent with these data is a recent study of 50 acrotomophiles by
Nattress. (3) Again, subjects were college educated, professional,
white males, 96% of whom had been aware of their interest in amputees
by their teens. In this sample, 41% had been married to or lived with
an amputee, more than 43% had pretended to be amputees and 22% desired
to become amputees.
On psychometric testing, the 50 acrotomophiles were found on average to
have high scores on self-esteem and intuitive thinking, but low scores
on social interest, emotional stability and personal relations. The low
scores were referred to by Nattress as "problematic behavior
tendencies." Such tendencies have become a concern of people with
disabilities since devotees do demonstrate problematic behaviors,
ranging from collecting names, addresses and phone numbers of disabled
persons, to obsessive and intrusive phone calls, letters and e-mail to
persons with disabilities, attending and sometimes organizing
disability-related events, lurking in public places to watch, take
covert pictures of, talk to and touch disabled persons, and even
engaging in predatory stalking. (1,3,19) For example, over 85% of
Nattress' sample agreed with the statement, "If I see a female amputee
at a shopping mall I will follow her," and over 57% agreed that, "If I
see a female amputee in a store I will try to talk to her."
In spite of more than a century of description, the origin of DPW's
attractions, desires, and behaviors has yet to be determined. The
following cases are presented in an effort to understand the psychology
of DPW's and to suggest a single psychologic model - that of Factitious
Disability Disorder - 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.
Case 1: Devotee/Pretender
Ms. D. is a 48 year old white female who presented when her husband was
evaluated for Post-Polio Sequelae (PPS). (20) (N.B.: Some demographic
information and circumstances in the cases have been changed to protect
the patients' anonymity.) She had been married for ten years to her
husband, a 55 year old polio paraplegic who walked with forearm
crutches and two knee-ankle-foot orthoses. She presented crying and
agitated after reading an article in New Mobility magazine entitled
"Devotees of Disability." (1) "I am all of this," she said tearfully,
"I can't live with this inside of me any longer."
Ms. D. described herself as a devotee and pretender. She had been
interested in men who had mobility impairments since she was a
teenager. The first evidence of her interest was in high school when
she dated a boy who had a severe limp, "He was very self-centered, not
very likable, but I dated him anyway. I wanted to hold him, to feel his
limp as we danced, to touch his hip and leg." Although they kissed, she
reports not being very sexually aroused by him and was interested, not
in having intercourse, but in being with him and potentially seeing his
affected leg.
When Ms. D. went to college she would occasionally sketch men who were
naked except for leg braces and crutches. She dated a number of
non-disabled men in college and had her first sexual experience with
someone who was not disabled, which she described as "very satisfying
and orgasmic." However, she was constantly looking for disabled men.
While visiting a museum she saw a man her own age walking with long leg
braces and crutches, "I became flushed and flustered. I followed that
poor man throughout the museum." She became despondent when she could
not figure out a way to meet the man.
In graduate school she dated a teaching assistant who limped as a
result of an amputation, "He would walk around in summer with loafers
and no socks. I could not take my eyes off the cream-colored artificial
foot I could see above his shoe." She reported not being attracted to
this man but dated him anyway, saying, ""I wanted to hold him, to feel
him limp and his artificial limb. I so very much wanted to sleep with
him so I could see his artificial leg." Ms. D. suggested that they have
sex but the man said he had never had intercourse and that he would not
sleep with the patient because of he was an amputee.
Shortly thereafter, a singles magazine was mailed to her post office
box. In it was a personal ad from a man using a wheelchair. Ms. D.
answered the ad and arranged for a date. She met the man at his home
and they had dinner at a restaurant, "He was obese and I think mildly
retarded. But I was so excited to be seen in public with him." They
went back to the man's home and began kissing. "Incredibly aroused" at
first, her ardor quickly cooled. She excused herself, retired to the
bathroom and masturbated to orgasm by imagining herself having sex with
the man, "At the time I thought it was so strange. He was in the other
room, but he did not excite me. Yet the thought of being with him, and
especially seeing his wheelchair in my mind, is what brought me to
orgasm." They did not continue to have sex nor did they meet again.
After finishing her graduate degree she began working for a large
corporation. She continued to occasionally date non-disabled men and
had sex that included orgasms. However, she continued to search,
obsessively at times, for disabled men. Two or three times a year her
interest would surface for up to a week, triggered by accidentally
seeing a man with a limp, on crutches or using a wheelchair, "I would
follow the man down the street or through a store, never able to figure
out how to strike up a conversation." Occasionally, she would see a
disabled man in the company of a non-disabled woman and feel, "sad and
lonely. I would think to myself, 'I would love you more than she does.
I could take better care of you than she can'."
For several days after seeing a disabled man she would drive to
shopping centers on the way home from work and pass the handicapped
parking spaces, try to catch a glimpse of another disabled man. After
several days of unsuccessful searching she would become dejected and
despondent, angry at herself for "giving in" to her compulsion.
Pretending. Ms. D. rose to a position of responsibility in her company
and traveled for at least one week each month. On one trip she noticed
a wheelchair behind the front desk of the hotel, "It struck me that I
could get a wheelchair while I was in a city where no one knew me and
roll around as if I were disabled. Flushed with excitement, my heart
pounding in my ears, I went to a surgical supply store and rented a
wheelchair."
She drove to a mall, parked and pulled the wheelchair out from behind
the front seat, "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."
As she pushed herself through the mall, she realized that what she
wanted was to encounter a disabled person, preferably a man. Not
finding a disabled person, she returned to the car and reversed the
same laborious process, dragging herself and then the wheelchair into
the car, hoping that she would be watched. She returned to the hotel
and researched the locations of other malls. Every night after her
business meetings she drove to a mall "and became the disabled person I
wanted to be. I was obsessed with being out in my wheelchair, to find
someone who had a disability 'just like me'."
After several days she parked next to a handicapped parking spot where
a man was getting out of his car, "He had a brace on one leg and a
severe limp. I loved his watching me drag myself into the wheelchair,
lifting my limp legs with both hands onto the foot rests. I felt an
overwhelming arousal. I was flushed, my whole body was burning. I
wanted to be with this disabled man...not sexually, although I would
have. I just wanted to be with him, be seen with him, to be disabled
with him." She did not pursue a conversation with the man and they
parted.
Ms. D. flew home, stimulated by her "adventure." For her next trip she
decided to bring a rented wheelchair to the hotel and "arrive as a
disabled person." She found a surgical supply store in advance of her
trip, booked a wheelchair accessible room at the hotel and picked up
the rented wheelchair on the way from the airport, "I was again flushed
and aroused. I loved the hotel staff looking at me wheeling through the
lobby. The man behind the desk and the bellmen were so kind and
thoughtful to me."
While at the hotel she went to the indoor pool, "I loved people looking
at my paralyzed legs, wondering why I couldn't move them." She again
traveled to local malls in search of "other disabled people." She would
return to her room after these adventures and masturbate to orgasm
while sitting in the wheelchair, "The fantasies that aroused me were
not even sexual. I would imagine my legs being paralyzed or a man's
paralyzed legs, or picture my being in a wheelchair, his walking on
crutches, or his braces, and have an orgasm." She admitted that she
could not remember having a masturbatory fantasy that did not involve
disability since she had been a teenager.
Her ultimate fantasy was to meet a disabled man while she was
pretending to be disabled and have sex, "I wanted to be accepted by a
disabled person as being disabled myself." However, she denied strongly
that she herself wanted to have a disability, "I wanted to be accepted
as a disabled person, not become one. I remember sitting at a stop
light and seeing a beautiful woman about my age in the car next to mine
with a wheelchair behind the front seat. Without thinking I said to
myself, 'Poor thing. I bet she never gets dates. I wouldn't really want
to be disabled for anything'." Ms. D. admitted thinking at the time
that this statement was bizarre given her desire to be seen as disabled
in public and accepted by people with disabilities as "one of them."
Ms. D. did not rent a wheelchair on future trips, saying, "Pretending
was exciting and even sexually arousing but frustrating, exhausting and
not fulfilling."
Marriage. When she was 38, Ms. D. met a new co-worker, "I was waiting
to begin a meeting and in came a handsome man walking on forearm
crutches and wearing two long leg braces. I couldn't talk, my whole
body flushed and I almost passed out." She was introduced to this man
and found him to be "pleasant and gentle, if quiet and shy." After
taking several days "to recover my senses," she invited him to lunch
and they dated frequently thereafter, "I was overwhelmed. All I could
think about was being with him, being seen in public with him. I loved
to have him next to me walking on his crutches. I loved to hear the
metal 'clink' of his crutches and braces."
Over the next several months she went to great lengths to help him when
he had significant difficulty dealing with company politics, "It was
actually sexually arousing to me to be able to help him." Although they
kissed and fondled each other on dates, they did not have intercourse
for the first two months, "I enjoyed kissing. I would grab the top of
his braces and pull him to me. Feeling the metal against my legs and
was very arousing, but I was not eager for intercourse. I would go home
and immediately masturbate, having orgasms remembering him on top of me
and us walking together in public."
After two months they would take off their clothes while kissing but
she arranged for him to keep his braces on. They finally had
intercourse without his wearing braces and she was orgasmic, "The first
time I was aroused by how thin his legs were, how they couldn't move.
The second time I missed the feel of his braces. I had to look at the
braces and crutches standing against the wall in order to have an
orgasm. By the third time, I stopped having orgasms but would go into
the bathroom afterward to masturbate, again imaging his braces or him
walking with his crutches."
After six months he professed his love and asked her to marry him. By
this time she was totally disinterested in sex but had come to care for
him and enjoy his company, "I thought, 'You've found what you always
wanted. Why shouldn't you marry him?'" They married three months later
and moved into his accessible apartment.
Over the next years they lived companionably and she provided him with
sex weekly although she stated, "I know it is ludicrous but I have to
fantasize during intercourse that I am with some other disabled man
just like him, with braces and crutches." Their frequency of
intercourse decreased to about once a month as her company
responsibilities grew and she began traveling about 15 days a month.
She still masturbated several times per month, fantasizing about being
with other disabled men, men with disabilities identical to her
husband, "I know this is ridiculous. I have married my fantasy man. Why
doesn't he arouse me?"
Over the last 5 years Ms. D.'s husband developed PPS, with bilateral
shoulder pain from crutch walking, new arm muscle weakness and pain,
back pain and increasing fatigue. He began to use a wheelchair for
distance one year ago which disappointed Ms. D., "I had still been
aroused by his walking on crutches. This is selfish and horrible, but I
know you'll tell him to use the wheelchair all the time and I won't
even have the pleasure of watching him walk anymore."
Insight: Childhood Dream of Disability. Ms. D. came to the fourth
therapy session reporting that she had had a dream in which she was a
young girl walking into her elementary school wearing long leg braces
and using crutches, "I walked into the school and felt in the dream,
'Yes! This is the real me. This is who I want to be: a disabled child.'"
When asked about the relationship of her dream to her attraction to
disabled men and her pretending to be disabled, she cried and began
talking about her parents, saying, "I was an accident born 15 years
after my brother. He left home when I was 2 and I was raised as an only
child." She described her father as "unsatisfied and a demanding
tyrant." Her father would nightly scold her mother for the mother's
flaws, "My mother would just sit there silently, looking wounded." Ms.
D. described herself as "a terribly lonely child," with neither parent
displaying emotion or affection, "They basically ignored me. My father
worked and my mother kept scrubbing the kitchen floor. They never
hugged each other or me or uttered one kind word."
We discussed why the patient wanted to be a disabled child and she
recounted an incident when a local child, who had had polio and walked
with crutches and leg braces, walked past their home on the way to
school, "My father saw the girl as he retrieved the morning paper and
said to my mother, 'I saw poor Sally walking to school.' 'Yes,' said my
mother, 'Poor Sally' and her eyes filled with tears. I had never seen
either one of them show any tender emotion before!"
Ms. D. also remembered a class trip a few years later when she saw
another girl who walked with crutches and leg braces, "I just stared at
her from a distance, seeing how her classmates carried things for her,
how the teacher walked with her behind the rest of the class." After
that experience Ms. D. would play in the family garage using croquet
mallets as crutches and tying sticks to her legs for braces. She also
remembered finding her old baby carriage and pretending it was her
wheelchair. The patient concluded, "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."
After the dream and the discussion of her childhood, Ms. D.'s interest
in pretending she was disabled and even looking for disabled men
decreased markedly, "I will get somewhat excited if I see disabled men,
but I am no longer compelled follow or go looking for them. Sometimes I
have the urge to rent a wheelchair when I'm on a trip, but there's no
point to it any longer?"
Ms. D. is no longer aroused by fantasies of disabled men and has
stopped masturbating using such fantasies. She has for the first time
begun fantasizing about and even achieves orgasm thinking about having
sex or intercourse with non-disabled men. Ms. D. also has begun to
enjoy sex with her husband, "My husband is a good man and I do love
him. I am ashamed that I used him, that I married him under false
pretenses. But I want our relationship to work."
Ms. D. discontinued psychotherapy just before her husband was about to
begin treatment with the Post-Polio Service so that, "he will not
discover my secret."
Psychology of DPW's
A variety of explanations have been offered for DPW's attractions,
desires and behaviors. A preference for a disabled or disfigured, and
therefore less threatening, more attainable or more easily dominated,
'love object' is a commonly-heard explanation for attraction to
disabled persons (3,7) However, this explanation for preferring a
disabled partner explains neither DPW's obsessive and compulsive
attraction to disabled persons nor the powerful desire to appear or to
become disabled. Ms. D. had had a number of relationships with
non-disabled men and did not marry her husband out of a fear of
abandonment, i.e., that a disabled husband would 'not be able to run
away from her.'
Another explanation for devotees' attraction is the association in
childhood of a disability-related stimulus, e.g., an amputee's stump or
leg braces, with a powerful emotional state. Money suggested that one
apotemnophile's childhood fear of amputation may have been replaced by
the erotitization of the stump, transforming a terror into a joy. (21)
A more intuitively appealing mechanism would be the pairing in
childhood of a disability-related stimulus with sexual arousal. For
example, one plaster cast devotee had his first sexual experience with
a girl who was wearing a leg cast. (1). However, only 19% of
respondents to the AMPIX survey related their interest in amputees to
any kind of direct contact with a disabled person, and the overwhelming
majority of devotees have reported their interest in disabled persons
began long before puberty. (3,18) Ms. D.'s interest also predated
puberty and she had had no childhood fear of amputation or disability.
Attraction to disabled persons has also been related to homosexuality,
sadism and bondage. (10) An amputee's stump has been suggested to
resemble a penis, therefore providing a less threatening sexual
stimulus for male "latent homosexuals" and a counterphobic protection
against the fear of castration. (10) A stump's similarity to a penis
has also raised the possibility that a desire for amputation is a
"counterphobic" antidote for male acrotomophiles' fear of castration,
although such fears have not been documented. (7,10,16) However, recent
surveys find no increased prevalence of homosexuality, sadism or
interest in bondage among acrotomophiles. (3,18) Any similarity between
a stump and one's own penis would have little personal meaning for Ms.
D., not only because she is a woman but also because she was primarily
attracted to men with braces and crutches and was herself interested in
pretending to be a wheelchair user. Further, Ms. D. was exclusively
heterosexual and had no interest in sadism or bondage.
Several case studies indicate that there may be a higher incidence of
transvestites and transsexuals among DPW's. (3,10,13,14,22,23) 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-occurring genders. Ms. D. was neither a transvestite
nor uncomfortable with her gender.
Riddle (24) 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:
A comment of sympathetic concern by the mother regarding an amputee may
be the triggering event. The child rationalizes that he would be
lovable if only he were an amputee like the person his mother spoke so
sympathetically about. In his neurotic state he becomes [a] wannabe.
The injured child conceptualizes that the removal of a limb represents
partial destruction of the body [which] would satisfy his own need for
self-destruction.
When puberty strikes, [this childhood] emotional turmoil is
regurgitated [and] the same solution is applied to the new problem. But
this time the solution is applied to the person to whom the adolescent
feels he is expected to be sexually attracted. From out of his
subconscious the thought evolves that to be lovable the person must be
an amputee.
Ms. D.'s case supports several elements of Riddle's model. Ms. D. did
feel a deprivation of love and emotional rejection from both parents.
The lack of overt affection between her parents, in addition to the
notion that her birth was an accident her parents regretted, do suggest
an anti-sexual attitude. Most importantly, Ms. D. remembered a specific
triggering event: seeing her unemotional parents express caring and
strong positive emotion - the only such expression in her memory - in
response to a disabled child. One can imagine the patient concluding in
that moment that having a disability was a requirement for being loved.
Other descriptions of DPW's note the association of having a disability
with parental love and attention (7,13,14) as do DPW's themselves:
ATTENTION. One simple word. Why do I want attention? Is there a way for
me to get that desired attention other than using my wheelchair, or
becoming paraplegic? As a child, I felt that my parents weren't giving
me the kind of attention I wanted. There were a lot of people with
disabilities [where we lived]. I guess that the attention my parents
were giving the disabled people was more desirable in my child's eyes
than the way I felt I was treated. I thought that if I were disabled I
would finally get the craved attention from my parents. All the rest,
all the desires I have now, the want for braces, the desire to use the
[wheel]chair, the urge to become disabled, all that stems from then.
(25)
In contrast to Riddle's model, there is no evidence that Ms. D. had a
need for self-destruction that was fulfilled by having a disability. It
is also unlikely that Ms. D. dated disabled males because she felt that
only someone who had a disability could be "lovable." Her behavior
suggests not love for her disabled boyfriends but a compulsive desire
to be with them. She dated several men with whom she was not in love -
men whom she did not even particularly like - so that she could be with
them in public. Ms. D.'s interest seems to have been not sexual
gratification but receiving by association the love she believed would
be lavished on her disabled boyfriends. This conclusion is supported by
self-reports of DPW's who compulsively follow disabled people, not
necessarily to have a sexual encounter, but to watch, be with or talk
to them:
I have a great deal of admiration for those with...disabilities, and I
often find myself desperately wishing I could somehow get to know that
special person. [W]hen I encounter a disabled person [I] find myself
wanting to somehow let them know that I am on their side. (Italics
mine.) (25)
[W]henever I see a one-legged girl, I follow her through a street and
get feelings of exhilaration, although there is no erection or
ejaculation. (13)
I will admit I like to look at a woman in a wheelchair FAR more than a
man [in a wheelchair] but it is in no way sexual for me, I'm 100%
straight. I want to BE that girl. (26)
Besides receiving love by association, DPW's hunger for and fascination
with the details of daily living with a disability may be a vicarious
way to experience having a disability. (2,3,25) In addition, devotees
may attempt to fulfill their own unmet needs for love and attention by
projecting them onto persons with disabilities. Devotees are renowned
for being excessively solicitous of and helpful toward disabled people.
(2,3) One amputee remarked that all the devotees she has met are, "so
nice, so attentive and understanding [and] helpful;" of one devotee she
said, "The more he does for me the better it is for him." (2) Note Ms.
D.'s sexual arousal while helping her husband at work and her sadness
and loneliness when seeing a non-disabled woman with a disabled man, a
circumstance in which she is neither being cared for as, nor caring
for, a disabled person.
Devotees' intense interest in attending to the needs of disabled
persons is reminiscent of patients who become disabled by chronic back
pain. Both devotees and chronic pain patients are said to have an
"extremely high overachievement tendency." (3,16,18,21,27)
Overachieving chronic pain patients provide for the needs of others "in
a slave-like manner" until a minor injury provides a "rational and
socially acceptable" reason for ceasing overachieving and care taking,
becoming dependent on others and thereby having their own needs for
love and attention met. (28-30)
There is evidence of devotees' desire to stop overachieving and be taken care of:
We, males also, have some feminine need; for a change [we should not]
have to play the macho game all the time. (31)
This quote from a devotee/wannabe is of special interest given
Nattress' finding of a "less macho" persona in devotees and that the
overwhelming majority of DPW's are male.
That a similar mechanism is operating in pretenders and wannabes is
suggested by the finding that the majority of acrotomophiles are also
pretenders (61%) and wannabes (51%), whose childhood experiences may
have rendered them unable to meet their own needs and caused them to
conclude that disability is the only socially acceptable reason - even
the only possible reason - for one to be worthy of love and attention
(3,18):
My first really clear memory of wanting to be in a wheelchair was when
I was about twelve. I was watching TV with my family, and saw this
girl, about my age, on some telethon or fund raiser. She was in a
pretty little pink checkered dress, pigtails, just the most adorable
thing, and she was in this child-sized wheelchair, her legs in
little-girl style white leggings and braces. I don't know why, but I
remembered how much I wanted to BE that girl. The attention she was
getting, being on TV, being the object [of] the worlds best wishes and
prayers. (26)
Note Ms. D.'s desire to be watched pushing her wheelchair and lifting
her "paralyzed legs," as well as her arousal when the hotel staff was
"so kind and thoughtful" when she arrived using a wheelchair.
Finally, the use of projection by devotees is supported by the finding
that only 13% of acrotomophiles have had a long-term relationship with
an amputee. (3,18) This statistic is reflected in Riddle's (32)
statement, "No amputee is the right amputee," a reference to
acrotomophiles obsessive but typically unsuccessful search for the
'amputee of his dreams.' (1) Acrotomophiles describe having had many
encounters with amputees - some sexual, some casual - not infrequently
preferring "the amputee in his head to a real woman." (1,2,18) An
actual relationship would cause the disabled individual to become a
'real person,' making projection of the DPW's own needs difficult or
even impossible, and eliminating this indirect means for experiencing
love and attention. Such a failure of projection is supported by Ms.
D.'s almost immediate loss of arousal during sexual encounters with
disabled men, but her ability to sustain arousal and even the ability
to achieve orgasm using fantasies and imagery that included the same
disabled men.
DPW's and Factitious Disability. 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.
However, the realization of the absence of parental love, even in
adulthood, can be so painful as to be intolerable. In the most extreme
case, such emotional pain could make impossible the recognition of the
absence of parental love and even prevent the conscious awareness of an
interest in disability. This circumstance would set the stage not for
creation of a DPW, but for the more familiar Factitious Disorder
[DSM-IV 300.19] presenting as a physical disability as is seen in the
following case.
Case 2: Wannabe Unaware
Ms. W., a 45 year old white female, presented for evaluation by the
Post-Polio Service complaining of arm and leg weakness, moderate to
severe daily fatigue, disturbed sleep, decreased balance and falling.
She had an equivocal history of childhood polio, her mother saying that
she had been lethargic for three to four weeks when she was about a
year old. Ms. W. stated that she had to wear "special shoes" until she
was seven, that she fell frequently during childhood and that she
continued to fall into adulthood. At age 21, Ms. W. had hip surgery "to
stop my falling" but could not describe what procedure had been
performed. At ages 32 and 37 she underwent surgeries to repair right,
and then left, rotator cuffs. At age 38 she underwent surgery for right
lateral epicondylitis after which she had minimal improvement of
symptoms.
Ms. W. underwent a nephrectomy at age 32 necessitated by an
arterio-venous malformation. She became depressed following the surgery
and attempted suicide with prescription medication at age 35 "because
of the surgery, an abusive boss and lack of family support." Notably,
the suicide attempt followed a neurological evaluation for her muscle
weakness, during which the neurologist said her leg weakness might have
been "emotional." Her evaluation for leg weakness at age 35 was at
variance with her initial report of leg weakness onset at age 39. When
asked about the discrepancy in the dates and the reason for her suicide
attempt she responded loudly, "If you say my problems are all in my
mind I'll go home and kill myself." Ms. W. had been out of work and on
disability since age 41 because of "muscle weakness and tiredness." She
reported a second suicide attempt at age 43 because of "quality of life
issues."
At age 41 she was given a solid knee cage brace for anterior knee pain.
The next year a plastic ankle foot orthosis was attached to treat
"instability." Because of discomfort, she rarely wore this orthosis.
Ms. W. reported that her muscle weakness has become most severe over
the past 18 months. She began using axillary crutches 6 weeks before,
and purchased Lofstrand crutches 2 weeks before her PPS evaluation on
May 3. She started wearing the orthosis a few days before the
evaluation.
Evaluation and Therapy. Ms. W. presented with a slow and labored gait
using the crutches, putting little weight on and dragging her right
leg. Her manual muscle test [MMT] grades on the right were 2/5 in the
hip, 3/5 in the quadriceps and 2/5 in the hamstrings; MMT on the left
was 4/5 in the hip and 4/5 in the quadriceps and hamstrings.
She presented for her first physical therapy session on June 10. She
arrived in a wheelchair that she obtained the day after her PPS
evaluation 5 weeks earlier. All muscles in her upper extremities tested
5/5. MMT on the right was trace in the hip, 0/5 in the quadriceps,
trace in the hamstrings and 0/5 for foot dorsiflexion; MMT on the left
was 2/5 in the hip, 3/5 in the quadriceps and 2/5 in the hamstrings.
On June 10, Ms. W. related a dream in psychotherapy in which she was
able to ice skate, but said, "I know the truth about my life. I know
what my legs can't do." On June 12 she called, extremely agitated and
crying, after a conversation with the Post-Polio Service physiatrist
whom she said, "Asked me if I would ever walk on my own again, as if I
should know!" On June 24 she related being "forced" by her mother to
have her tonsils removed and stated that she needed to be "validated"
by her mother.
On July 1, 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." It was
discovered in the hospital that the patient had been taking a
prescribed narcotic that she had not mentioned to the PPS treatment
team. It was also discovered that her two rotator cuff surgeries had
been deemed unnecessary by her orthopedic surgeon but performed because
of Ms. W.'s constant complaints of pain.
The patient's psychosis cleared and she was discharged on July 2. She
said, "My doctor friend tells me I walked at home and in the hospital."
Ms. W. did not believe that she had been able to walk and stated, "The
doctor just doesn't believe in PPS." She also said, "I don't have to be
in the rat race anymore because of my PPS." She admitted to feeling
lonely, saying, "I wish I were a child."
On July 15, Ms. W. returned to physical therapy and stood unsteadily
without her brace in the parallel bars. She appeared to be tightly
holding her right knee slightly flexed and foot plantar flexed. This
positioning of the leg made clearing her foot difficult and required
the use of her hip flexors to advance her leg, which she was able to do
in a jerky fashion in spite of the hip flexors being measured as trace.
On July 30, Ms. W.'s husband reported that she had again been admitted
to an inpatient psychiatric unit, presenting with agitation, loose
associations and "her head full of thoughts." She was diagnosed as
having a manic episode and was discharged on lithium, tegretol and
respiridone. The patient's husband stated that Ms. W. was again able to
walk at home and in the hospital when she was psychotic, although she
still did not believe it.
Her husband also said that he had been thinking about why his wife was
unable to walk when she was not psychotic:
I just remembered something my wife said when we first met. She said
that she had always wanted to have a 'little disability' that would not
limit her, like wearing braces on both legs, but only up to her calves.
She thought that her mother and people in general would have treated
her more kindly if she had been a disabled child.
Ms. W. did not return for treatment with the PPS Service but called in
five months later, saying that she had just received SSDI and that she
wanted a prescription for a power wheelchair so that she could visit
Disney World. She was asked to collect her medical and psychiatric
records and an appointment would be made. She did not call again.
Factitious Disability Disorders
Clinical Implications. Ms. W.'s childhood desire to have a 'little
disability' she thought would have allowed her to be "treated more
kindly," and her subsequent development of a Factitious Disorder,
suggest that those with factitious physical disabilities can be
combined with devotees, pretenders and wannabes to create a diagnostic
grouping that could be called Factitious Disability Disorders (FDD).
FDD's would be conditions in which disability - real or pretended, ones
own or that of another - provides an opportunity to be loved and
attended to where no such opportunity has otherwise existed. Money (16)
states that apotemnophilia may "share something in common [with]
Munchausen's syndrome." Yet, he distinguishes between the Munchausen's
patient, who "is obsessed with self-inducing symptoms repetitively for
the sake of being a patient," and the apotemnophile who is supposedly
satisfied with 'just one' amputation. However, the operative phrase for
both conditions is "for the sake of being a patient," i.e., to receive
the care and attention that would otherwise not be obtainable.
Apotemnophiles need only one (albeit extreme) medical intervention that
leaves them with an indelible and obvious stigma of disability that
they believe will permanently satisfy their need for love and
attention. (14)
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.
Awareness of the desire to be disabled is present in the wannabe and
pretender, can be absent in the devotee and is definitely absent in the
patient with a factitious disability. The appearance of disability is
absent in the devotee, the non-disabled wannabe and the pretender
between binges of appearing to be disabled, but present in the wannabe
who successfully becomes disabled, a person with a factitious
disability and in the pretender while using assistive devices.
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.
Interpersonal Implications. For over a century, the principle focus of
the literature on DPW's has been sexual. Although this focus has caused
the apparent psychologic similarities among DPW's and those with
factitious disability to be overlooked, the issue of relationships
between devotees and disabled persons is of great importance. Nattress
(3) stated that attraction to disabled persons is only in "relatively
few [acrotomophilies] a dysfunctional condition that should be treated"
and that "the interest in female amputees should be considered a
quality that is useful in drawing men and women together." Riddle (24)
stated that disabled women "should take advantage of what is being
offered to them." While it is both odious and unsupportable to imply
that people with disabilities will be desirable only to those with a
paraphilic attraction, there is evidence that devotee's unique
attraction is not particularly useful in bringing - and more
importantly keeping - couples together. Despite their obsessive
interest, only a small minority (21%) of acrotomophilies have had
long-term relationships with amputees (3,18) A majority of devotees
attending a yearly 'dating weekend' with amputees are reported to be
already married to someone who is not disabled, "more interested in sex
and [the] stump than a relationship," or exclusively involved with 'the
amputee in their heads.' (2) Any relationship based on or even
initiated as a result of projected desires for love and attention -
what Stoller (33) described as "an attempt to cure the effects of
[childhood] traumas, frustrations, conflicts, and other painful
conditions" - does not bode well for reciprocity or longevity.
An additional concern is that devotees, who very infrequently admit
their attraction to disability, are known to volunteer or work where
contact with disabled persons is assured, e.g., as prosthetists,
orthotists and possibly as personal care assistants. (3,19,34) The
potential for harm to disabled persons inherent in such situations is
obvious.
Riddle's conclusion - that "part of the answer is that [DPW's] need to
learn how to love themselves" - contains both the essence of the
problem and its potential solution. (24)
ACKNOWLEDGEMENTS
The author gratefully acknowledges the use of information from
evaluations performed by Dr. Jerald. Zimmerman and Michelle Beltram,
P.T., the extensive editing by and conceptual discussions with Drs.
Nancy Frick and Jesse Kaysen and the efforts and expertise of Mary Ann
Solimine, R.N., M.L.S., with out whom this work would not have been
possible.
REFERENCES
1. Storrs B: Devotees of disability. New Mobility 6:50-53, 1997.
2. Storrs B: Amputees, Inc.: Amputees pitching products and themselves
to devotees of disability. New Mobility 7: 26-31, 1997
3. Nattress LE: Amelotasis: A descriptive study (2nd Ed). Unpublished doctoral dissertation, 1996.
4. von Krafft-Ebing E: Psychopathia Sexualis. Brooklyn: Physicians And Surgeons Books, 1932.
5. Dickes R: Fetishistic behavior. J Am Psychoanal Assoc 11: 303-330, 1963.
6. Davison C: Intrapsychic factors in the choice of a sexual object. Psychoanal Q 12: 217-222, 1943.
7. Fleischl MF: A man's fantasy of a crippled girl. Am J Psychother 14: 471-748,1960.
8. Stekel W: Sexual aberrations (Vol 2). New York, Horace Liveright, 1930.
9. Money J: Paraphilia in females: Fixation on amputation and lameness.
J Psych Human Sexuality 3: 165-172, 1990.
10. Wakefield PL, Frank A, Meyers RW: The hobbyist: A euphemism for
self-mutilation and fetishism. Bull Menninger Clinic 41:539-552, 1977.
11. Everaerd W: A case of apotemnophilia: A handicap as sexual preference. Am J Psychother 37: 285-293, 1983.
12. Hirschfeld M: Sexual Anomalies. New York, Emerson Books, 1956.
13. London LS: Dynamic Psychiatry: Transvestism-Desire for crippled
women (Vol 2). New York, Corinthian Publications, 1952.
14. Money J, Jobaris R, Furth G: Apotemnophilia: Two cases of
self-demand amputation as a paraphilia. J Sex Res 13: 115-125, 1977.
15. Money J, Simcoe KW: Acrotomophilia, sex and disability: New
concepts and case report. Sexuality and Disability 7: 43-50, 1986
16. Money J: The Adam Principle. Buffalo, Prometheus Books, 1993.
17. Ollason JG: An interview with Mayda. OverGround 5: 12-20, 1996.
18. Dixon D: An erotic attraction to amputees. Sexuality and Disability 6: 3-19, 1983.
19. Ollason JG: Why devotees sometimes behave badly. Available:
http://www.ardgrain.demon.co.uk/overground/features/theory/whyde.html,
1997, July 7.
20. Frick NM, Bruno RL: Post-Polio Sequelae: Physiological and
psychological overview. Rehabil Lit 47: 106-111, 1986.
21. Taylor B: Amputee fetishism: an exclusive journal interview with
Dr. John Money of Johns Hopkins. Maryland State Med J March: 35-38,
1976.
22. Woody RH: Integrated aversion therapy and psychotherapy. J Sex Res 9:313-324, 1973.
23. Ollason JG: Denise Anne: An interview with the ultimate wannabe. OverGround 6:20-35, 1993.
24. Riddle GC: The origins of devotees' attraction. Invited
presentation to the Fascination Conference, Chicago, 1988.
25. Steen N: Wannabe's page. Available: http://www.geocities.com/HotSprings/8017/, 1997, July 7.
26. Anderson C: A little about me. Available: http://members.tripod.com/~paracathy/MYSELF.TXT, 1997, July 7.
27. Bruno RL: Predicting hyperactive behavior as a cause of
non-compliance with rehabilitation: The Reinforcement Motivation
Survey. J Rehabil 61: 50-57, 1995.
28. Blumer D, Heilbronn M: The pain-prone disorder: A clinical and
psychological profile. Psychosomatics 22: 395-402, 1981.
29. Blumer D, Heilbronn M: Chronic pain as a variant of depressive disease. J Nerv Ment Dis 170: 381-406, 1982.
30. Gentry WD, Shows WD, Thomas M: Chronic low back pain: A
psychological profile. Psychosomatics 15: 174-177, 1974.
31. "Paul:" A letter from Paul. OverGround 6:42-51, 1996.
32. Riddle GC: Amputees and devotees: Made for each other? New York: Irvington Publishers, 1988.
33. Stoller RJ: Observing the erotic imagination. New Haven: Yale University Press, 1985.
34. "Fritz:" A prosthetist's perspective. OverGround 3: 7-15, 1993.