This information is published here in good faith following its distribution on an internet newsgroup. If copyright is being infringed, please inform me via the e-mail address on the index page and it will be removed immediately.

 This article has a lot in common with the "common threads" on the index page. Do let me know what you feel about it.
 

Journal of Sexuality and Disability, 1997; 15: 243-260.

Devotees, pretenders and wannabes: Two cases of Factitious Disability Disorder.

Richard L. Bruno, Ph.D.
Director
The Post-Polio Institute
Englewood Hospital and Medical Center
Englewood, New Jersey  07631
(201) 894-3724
PPSENG@AOL.COM


ABSTRACT


        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 [Figure

1].



Figure 1 About Here



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.




Return to Index Page
21.4.98