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Paralyzed by Desire: A New Type of Body

Integrity Identity Disorder

Article in Cognitive and behavioral neurology: official journal of the Society for Behavioral and Cognitive
Neurology · February 2012
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 ORIGINAL STUDY
Paralyzed by Desire: A New Type of Body Integrity
Identity Disorder
Melita J. Giummarra, PhD,* John L. Bradshaw, PhD, DSc,* Leonie M. Hilti, PhD,w
Michael E.R. Nicholls, PhD,z and Peter Brugger, PhDwy
Background: Body incongruity in body integrity identity dis-
order (BIID) manifests in the desire to have a healthy limb
amputated. We describe a variant of the disorder: the desire to
become paralyzed (paralysis-BIID).
Method: Sixteen otherwise healthy participants, recruited
through Internet-based forums, websites, or word of mouth,
completed questionnaires about details of their desire and ac-
companying symptoms.
Results: Onset of the desire for paralysis typically preceded
puberty. All participants indicated a specific level for desired
spinal cord injury. All participants simulated paralysis through
mental imagery or physical pretending, and 9 (56%) reported
erotic interest in paraplegia and/or disability. Our key new
finding was that 37.5% of paralysis-BIID participants were
women, compared with 4.4% women in a sample of 68 in-
dividuals with amputation-BIID.
Conclusions: BIID reflects a disunity between self and body,
usually with a prominent sexual component. Sex-related differ-
ences are emerging: unlike men, a higher proportion of women
desire paralysis than desire amputation, and, while men typically
seek unilateral amputation, women typically seek bilateral am-
putation. We propose that these sex-related differences in BIID
manifestation may relate to sex differences in cerebral lateraliza-
tion, or to disruption of representation and/or processing of body-
related information in right-hemisphere frontoparietal networks.
Key Words: paraplegia, body integrity identity disorder, sex
differences, laterality, paraphilia
(Cogn Behav Neurol 2012;25:34–41)
Received for publication May 5, 2011; accepted December 19, 2011.
From the *Experimental Neuropsychology Research Unit, School of Psy-
chology and Psychiatry, Monash University, Clayton, Victoria; zSchool
of Psychology, Flinders University, Bedford Park, Adelaide, South
Australia, Australia; wNeuropsychology Unit, Department of Neurol-
ogy, University Hospital, Zurich; and yZurich Center for Integrative
Human Physiology, University of Zurich, Zurich, Switzerland.
P.B. and L.M.H. were supported in part by the Swiss National Science
Foundation. M.J.G. was supported by a Monash University Post-
graduate Publication Award and Monash Bridging Fellowship.
The authors declare no conflicts of interest.
Reprints: Peter Brugger, PhD, Neuropsychology Unit, Department of
Neurology, Frauenklinikstrasse 26, 8091 Zurich, Switzerland (e-mail:
peter.brugger@usz.ch).
Copyright r 2012 by Lippincott Williams & Wilkins
34 | www.cogbehavneurol.com
B ody integrity identity disorder (BIID) is characterized
by a profound experience of incongruity between the
biological and the desired body, manifesting in the desire
to amputate an otherwise healthy limb. BIID is first and
foremost an identity disorder, akin to sex identity dis-
order, but has parallels with neurological signs of aso-
matognosia, acute hemi-concern, somatoparaphrenia,
and misoplegia, with aversion or hatred of the target
limb, altered embodiment, and/or limb disownership.1,2
There is a hyper-attention toward, and aversion to, the
target limb, and/or a feeling of limb disownership.2
The disabled body image typically begins in child-
hood or early adolescence, usually after a young person
sees or interacts with an amputee and identifies with his or
her disability. In most people, the target limb is physically
and functionally normal (but see participant 7 in Results
section, in Table 2, and in Blanke et al’s2 recent report),
and there is no psychotic disorder.3 Ultimately, in most
people with amputation-BIID, realization of the desired
amputation satisfies and extinguishes the obsession,4
although in some people the amputation-desire shifts to
other limbs.5
Sex-related differences in amputation desire are
emerging. First, men seem to be over-represented in
BIID, with women making up only 7.6% to 15% of 2 of
the largest samples studied to date.2,4 Second, the mani-
festation of amputation desire differs between men and
women: men tend to desire unilateral left-limbed ampu-
tation, and women report dissatisfaction with more than
1 body part. According to published case reports and
series, 75% to 100% of women desire bilateral or greater
amputation, compared with 8% to 29% of men.2,4 Neu-
rological models of BIID have implicated dysfunction in
body representation, self-attribution, and body ownership
in right-hemisphere networks,2 particularly the superior
parietal lobe and frontoparietal circuits.6,7
We suggest that the supernumerary amputation
desire more typical in women than men may also relate to
right-hemisphere dysfunction. Higher-order representa-
tion of the body is maintained predominantly through
right-hemisphere frontoparietal regions.8 The emerging
evidence relating to higher-order dysfunction in people
with BIID implicates brain regions such as the superior
parietal lobe, responsible for generating and/or main-
taining appraisals not only of limbs on the left side of the
body, but of the body as a whole.6
Cogn Behav Neurol  Volume 25, Number 1, March 2012
Cogn Behav Neurol  Volume 25, Number 1, March 2012
A NEW VARIANT OF BODY INCONGRUITY:
DESIRE FOR PARAPLEGIA
We present a new variant of BIID, in which people
wish for paralysis below the waist. Such people seem to be
the converse of patients with anosognosia for hemiparesis
or hemiplegia,9 who believe that they are not paralyzed
and that their paretic or paraplegic limbs function nor-
mally. People with the new variant of BIID are convinced
that their normally functioning limbs should be paralyzed.
This manifestation of BIID has been only briefly de-
scribed previously.10 People with paralysis-BIID desire
profound impairments to the function and sensation in
their lower limbs, but, unlike people with amputation-
BIID, do not want those limbs removed. Although am-
putation-oriented and paralysis-oriented manifestations
of BIID obviously differ in the way in which people be-
lieve that their body function and shape require adjusting,
we think that both should be conceived of as belonging to
the spectrum of body integrity identity disorders.
Defining the characteristics of the paralysis variant
of BIID is important for understanding the neuro-
psychology of corporeal awareness and the mediation
between self-identity and the body percept. We provide
case summaries of people with this disorder and describe
its key features as they are expressed to varying degrees
in the different individuals. These people desire paral-
ysis below the waist, and they mentally or physically
simulate their desire. In 9 of the cases, the desire is ac-
companied by erotic and/or sexual fantasies about the
paraplegic state.
METHODS
Participants
We studied 16 people from around the world who
had paralysis-oriented BIID. They were aged 19 to 65
years (median [M] = 38.9, SD = 12.7), and 6 (37.5%)
were women. These 16 people were part of a larger BIID
study that also included 68 participants with amputation-
BIID. The amputation-BIID group had only 3 (4.41%)
women, a proportion closer to the 15%2 and 7.6%4 of
women in previously published studies of amputation-
BIID.
Our participants with paralysis-BIID were typically
well educated (M = 15.27 y, SD = 3.52 y; range, 10-22 y)
and were employed in technical (eg, engineering, science,
information technology; n = 5), teaching (n = 2), mana-
gerial (n = 3), or industrial (n = 1) positions, or were under-
taking postgraduate study or postdoctoral employment
(n = 3). Employment data were missing for 2 participants.
Participants 2, 4, 11, and 15 (25%) disclosed having had
depression in the past, and participants 2 and 11 still had
depression. Participant 11 had comorbid depression and
“burnout.” Participant 15 had comorbid depression and
anorexia during adolescence, but these had since resolved.
The age at which the BIID desire began ranged from 4 to 16
years (M = 9 y; SD = 4 y).
r 2012 Lippincott Williams & Wilkins
Paralysis Desire in Body Integrity Identity Disorder
Materials and Procedure
To recruit participants for our larger study of both
amputation-oriented and paralysis-oriented BIID, we
used BIID Internet forums (eg, “fighting it”) and websites
(eg, http://transabled.org/, Biid.org, biid-dach.org, and
biid-info.org). Our recruitment postings at these sites
sought responses from people with amputation and/or
paraplegia desires. Even though we addressed individuals
with both desires from each source, we cannot rule out a
recruitment bias relating to BIID type. We gave the par-
ticipants a questionnaire to complete and return either
through email or in person. The exploratory questionnaire
asked for basic demographic details (age, sex, years of
education, language spoken, and occupation) and for
psychological and psychiatric diagnoses. The questionnaire
also asked open-ended questions about the particulars of
the person’s BIID desire (Table 1). The questionnaire was
made available in both German and English; participants
wrote their answers in their native language. The study was
approved by local (Victoria and Zurich) university and
hospital ethics boards, and met the ethical standards laid
down in the 1964 Declaration of Helsinki.
RESULTS
We present here the key features defining our
group of 16 individuals with paralysis-BIID, within our
84-participant study of both forms of BIID. See Table 2
for a summary of each paralysis-BIID participant’s par-
aplegia desire, fetishism, pretending, and triggers.
Significantly more women presented with paralysis-
BIID (n = 6/16 [37.5%]) than with amputation-BIID
TABLE 1. Narrative Section of Paralysis-BIID Participant
Questionnaire
1. Please describe when you first wanted to become a paraplegic:
How old were you?
Did anything trigger the desire?
How did you explain the desire to yourself?
2. Please describe your current desire to become a paraplegic:
What are the main reasons that you want to become a paraplegic?
Do you ever pretend to be a paraplegic or disabled? If yes:
How often do you pretend?
Do you use any aids such as a sling or crutches, etc.?
Do you feel sexually attracted towards other people with disabilities/
paraplegia?
Does the thought of being a paraplegic yourself arouse you sexually?
Do you desire to become disabled in any other way?
Have you told anyone about your desire for paraplegia? If yes:
Who (e.g., only other people with BIID, family/friends, medical
staff)?
What was their response and what did it mean to you?
Have you ever had treatment (e.g., medication, hypnotherapy) for
your desire for paralysis? If yes, please list the single treatment types,
the duration, and their rated success (from 0 = completely
unsuccessful to 10 = very successful)
3. Please describe how you feel your lower limbs compared to your upper
limbs. Are they different physically? — sensorily? — motorically? —
aesthetically?
Do you feel that the lower limbs are diseased or ugly?
4. Which level do you desire to have paraplegia (if known)?
Can you list symptoms, apart from paralysis, that may emerge
after injury at that level?
5. Have you had any unsuccessful attempts at obtaining paraplegia?
www.cogbehavneurol.com | 35
 TABLE 2. Description of Paraplegia Desire, Paraphilia, Pretending, and Triggers of Paraplegia Desire in Our Series of Participants with Paraplegia-oriented Body
Integrity Identity Disorder
Paraplegia Paraphilia
Age of Onset (Alloplegiphilia and First Known Realization of BIID
Participant (y) Paraplegia Desire Autoplegiphilia*) Paraplegia Pretending Tendencies
Giummarra et al

#1 B11 Paraplegia under T8 None At age 15, started using a As a child, saw a young man in a
Man wheelchair. Later he bought an wheelchair and wondered if his
Age 40 orthosis and a Milwaukee brace. own life would be better if he
When alone, he uses a were paralyzed. This triggered
wheelchair. Outside, he uses a his desire for paralysis.
Milwaukee back brace. When he sees others in wheelchairs,
whether in real life or in pictures,

36 | www.cogbehavneurol.com
he mentally puts himself in their
situation.
#2 B12 Paraplegia under T10. Alloplegiphilia and autoplegiphilia: Fantasizes a lot about paralysis, Remembers from early childhood
Man Would accept a lesser level of devotee of amputee and but does not pretend often seeing amputees and people in
Age 52 paralysis as long as the legs are paraplegic women. Also aroused because he does not find it wheelchairs or with leg braces.
disabled enough to require a by the thought of becoming a gratifying. He pretends only Felt that having a numb,
wheelchair and in-dwelling paraplegic. (through mental imagery) that he immobile lower body would be
urinary catheters. cannot move his legs voluntarily. cool, sexy, and normal. At age
When a leg “falls asleep” from 16, wanted to change places with
sitting on it, he pretends that it is a paraplegic student in leg
from paralysis. braces. Early fantasies targeted
use of leg braces and crutches.
Wheelchair desire evolved later.
#3 B15 Paraplegia under T8 Alloplegiphilia only: masturbates Has occasionally pretended in a When he was 5, his father
Man to images of girls or women in rented or shopping mall wheel- contracted polio that caused a
Age 65 wheelchairs. chair. “It feels so right and comfor- leg disability. At age 15, he saw a
table, and handing it back is hard.” war film and injured soldiers.
#4 B5 Paraplegia under T12 Alloplegiphilia and autoplegiphilia: Pretended to be “crippled” as a No known trigger for the first
Woman since age 9, has fantasized about child. Now pretends by episode. As a child, had intimate
Age 37 amputation, paraplegia, and transferring from bed to chair as exposure to wheelchair-bound
quadriplegia, with fixation on a paraplegic would, or adjusting children and paralyzed relatives.
paraplegia and wheelchair use. her legs using her hands as if Was jealous that these children
paralyzed. received attention and had their
Cogn Behav Neurol

Mentally pretends to be seated in a physical and emotional needs



wheelchair instead of a regular met.

r
chair. Is waiting for her
wheelchair to be delivered and
intends to use it regularly.
#5 Early Paraplegia under L2-L3. “There’s Alloplegiphilia and autoplegiphilia: Owns 3 wheelchairs and spinal/ Before school age, was always
Man childhood an itch/spot or a mole and it feels first realized paraplegia neck braces to use at home. Uses interested in bandages and
Age 31 (before that there is something a little devoteeism in grade 6 (Bage 12) wheelchairs in public only when injuries such as broken arms.
school age) different at that point.” Wants to with a new, very attractive out of state, for fear of being seen Desire for paralysis is most likely
be wheelchair-bound and to paralyzed teacher. Not a and “found out.” Practices linked with having had a
experience paralysis. “strong” devotee, but does find transferring around home, but paralyzed teacher at age 12.
paralysis attractive. Does not not bladder and bowel routines.
obsess or fantasize about his
partner being disabled, but does
mental “role play” of paralysis in
himself or his partner.

(Continued)

2012 Lippincott Williams & Wilkins

Volume 25, Number 1, March 2012
 r
TABLE 2. (continued)
Paraplegia Paraphilia
Age of Onset (Alloplegiphilia and First Known Realization of BIID
Participant (y) Paraplegia Desire Autoplegiphilia*) Paraplegia Pretending Tendencies
Cogn Behav Neurol


#6 B4-5 Paraplegia under L2-L5. She None Pretends every 2 mo at home, No triggers. It was a kind of
Woman knows this from “perception,” sitting in a wheelchair, but only “bodily feeling” for as long as
Age 35 not “academically.” when alone. she can remember. When she saw
a picture of a girl sitting in a
wheelchair, she identified with
the paraplegic state.
#7 4 Paraplegia under T10. Also desires None As a young child, made orthopedic Starting at age 4, had constant

2012 Lippincott Williams & Wilkins

Man very high bilateral amputation
Age 56 corresponding to the level of the
tops of the steel-leather orthoses
that he wears on his atrophied
legs.
Initially, there was an erotic
component, but he is no longer
aroused by trying on orthoses or
seeing other disabled people.
Wears 2 ortheses, crutches,
shoes from small buckets. At age
12, built orthoses from 2 music
stands. Secretly used the
orthopedic shoes of a child at
school.
orthopedic shoes, and wheelchair
daily at home or when > 100 km
from home, and weekly in public.
encounters with 2 relatives and a
neighbor who had had polio. At
ages 7-9, had a teacher with a
shortened leg and fitted shoes for
a clubfoot (maybe from polio).
A school friend’s father also had
polio and wore 2 orthoses.
Volume 25, Number 1, March 2012

#8 14 Paraplegia under T5. Alloplegiphilia: sexually attracted Pretends once a month using a No triggers. Would just love not to
Man Would also like to have both legs to disabled people and to being a wheelchair and a urinal condom. be able to move and feel his legs.
Age 19 amputated 15 cm below the paraplegic.
knees, as his legs feel too big. Autoplegiphilia: thinking about
having amputated legs causes a
“horny” feeling.
#9 Probably Paraplegia under T12 or lower Alloplegiphilia and autoplegiphilia: Has wheelchairs, crutches, and leg Feels that the “addiction” is innate
Man before 12-13 sexually attracted to disabled splints. Pretends for at least 1 h and not influenced by external
Age 55 people and to being a paraplegic. each day at the office, and several stimuli or experiences. People
times a year in public using a with any type of mobility
handicapped-accessible hotel disabilities have always been
room. Pretending is frustrating intriguing. During his childhood,
because returning to “normal” is 2 girls in the neighborhood used
difficult. leg splints for polio.
#10 5 The level varies. Alloplegiphilia and autoplegiphilia: Pretending is connected to sexual Images of being paralyzed were
Woman Desire has dissipated with time and until puberty, was aroused by the desires and masturbation. She nurtured by the way films and
Age 46 is now more a mere fantasy than thought of being a paraplegic or used to pretend with slings, other media portrayed “cripples”
a true desire. having a paralyzed partner. crutches, and wheelchair, but as outsiders. This corresponded
During puberty, these fantasies rarely does so anymore. She now to her feeling lonely within her
also included becoming an finds that her imagination “gives family, not taken care of, etc.
amputee, and she was aroused by the most perfect feeling of
amputees. Even as a toddler, she reality” in pretending paraplegia.
would hang onto the edge of the
kitchen table, wiggling her legs in
the air, giving herself some sort
of very early sexual excitement.

www.cogbehavneurol.com |
(Continued)

37
Paralysis Desire in Body Integrity Identity Disorder
 TABLE 2. (continued)
Paraplegia Paraphilia
Age of Onset (Alloplegiphilia and First Known Realization of BIID
Participant (y) Paraplegia Desire Autoplegiphilia*) Paraplegia Pretending Tendencies
Giummarra et al

#11 6 T12. She knows this from a feeling None Lies on the couch, relaxing her legs No known trigger. Feels that the
Woman of pressure at that location. She Has previously mused about having without moving them. She desire was always there.
Age 26 feels that only when she becomes a relationship with a practices this 1-2 times a week.
paralyzed will she be the way she handicapped man in a
should be. wheelchair; however, is now
happily married to an able-
bodied man.

38 | www.cogbehavneurol.com
#12 6-7 T12. Wants to lose motor function
Woman and sensation from about 2
Age 39 fingers below the navel.
#13 8-10 T8-T10. Wants to have a complete
Man loss of control over the lower
Age 34 half of his body, including
incontinence and spasticity.
#14 12-13 L2-L3. Wants complete paralysis
Man of legs and feet, without affecting
Age 34 sexual or bladder function.
However, he finds it exciting to
think about himself in a
wheelchair with a catheter and
urine bag.
None
Because disabled people appear
more physically “normal” to her,
she feels more attractive sitting in
a wheelchair, but is not sexually
aroused.
None
Alloplegiphilia: sexually attracted
to paraplegic girls and to both
paraplegic and able-bodied boys.
Autoplegiphilia: sexually attracted
to the idea of becoming
paralyzed.
Other fetishes include young male
feet, sneakers and tennis shoes,
manual wheelchairs, catheters,
and diapers. The main desire is
for wheelchairs.
Uses urinary catheters. She
previously used a wheelchair very
often when shopping and
at home. Now she limits
wheelchair use to holidays and
occasional use at home.
Owns a wheelchair and uses it as
often as he can when in other
cities. Would use it for 24 h a day
if he could.
Often uses mental imagery to
pretend to be paralyzed. Thinks
about transferring from bed to
wheelchair, adapting his home
for paralysis, and performing
ordinary activities as a paraplegic
in a wheelchair.
Does not recall a specific trigger,
but noticed early that she was
fascinated by contact with, and
pictures of, paralyzed people; she
knew that this was the way she
wanted to live.
No definite trigger. Had early
exposure to a hemiplegic aunt.
His desire for paraplegia has
grown since age 10, when he also
began to dream of being
paraplegic.
At age 11-12, hated to play football
or run with his school friends
because he felt that he was in the
wrong body. The specific desire
for paralysis began at age 12
when he had his first sexual
fantasies.
Cogn Behav Neurol

#15 7 T12. Her legs feel heavy and numb None At home each day, uses a Seeing paraplegic people may have


Woman compared with the rest of her She is curious about what sex wheelchair and does not use her triggered the desire, but it is

r
Age 27 body. They are sensitive and she would be like as a paraplegic, but legs for 6-10 h at a time, for mostly just a general feeling that
does not like to feel them; for it is not an important issue. example, when transferring from “this is the way it should be.”
example, she dislikes the wheelchair to bed or couch. She
sensation of a blanket touching pretends less in public.
her legs, or being touched at the
“line” on her back where the
feeling should stop.
#16 16 Area of the navel, around T11 Autoplegiphilia: sexually attracted Has pretended around 8 times for No trigger. Feels that he would
Man to the idea of becoming 8 h each, sitting in a wheelchair become complete as a paraplegic.
Age 27 paralyzed. Not particularly with leg brace, orthopedic shoes, He would feel more attractive
attracted to disabled people. and swaddling clothes. and self-confident.
*Alloplegiphilia is paraphilia for others who are paralyzed or disabled. Autoplegiphilia is paraphilia involving becoming paralyzed oneself.
BIID indicates Body Integrity Identity Disorder.

2012 Lippincott Williams & Wilkins

Volume 25, Number 1, March 2012
Cogn Behav Neurol  Volume 25, Number 1, March 2012
(n = 3/68 [4.41%]); w2(1) = 14.82, P < 0.01, Fisher exact
Test. The total (N = 84) sample showed no significant
sex-related difference in the side of desired amputation
(left, right, bilateral) or paralysis (bilateral); however,
women were significantly more likely than men to desire
paralysis or amputation of 2 or more limbs. Specifically,
of our 48/84 participants who sought paralysis and/or am-
putation of 1 limb, only 2 (4.17%) were women, while of the
36/84 participants who desired paralysis and/or amputation
of 2 or more limbs, 7 (19.44%) were women; w2(1) = 5.02,
P < 0.05, Fisher’s Exact Test. The limbs desired for am-
putation were always both legs, plus 1 or both arms.
All 16 individuals with paralysis-BIID identified a
specific level at which they desired spinal cord injury.
Participants 7 and 8 had developed a concurrent desire
for bilateral leg amputation, and participant 7 specifically
wanted his amputations at the upper level of the orthoses
that he wore on his atrophied legs. Onset of the desire for
paraplegia typically predated puberty. Nine members of
the group reported experiencing sexual arousal through
thoughts of becoming paralyzed themselves (n = 8;
autoplegiphilia: paraphilia involving becoming paralyzed),
of others with paralysis or disability (n = 8; alloplegi-
philia: paraphilia for others who are paralyzed), and/or of
objects associated with paralysis or disability (eg, orthoses
or wheelchairs). To varying degrees, all participants
simulated paralysis through mental imagery and/or
physical pretending. We now describe a typical case of
paralysis-BIID in more detail.
Detailed Case Description
Participant 4, a 37-year-old woman, presented with
a complex desire for paralysis, together with paralysis
paraphilia, being sexually attracted to others with paral-
ysis. She pretended manifestation of her BIID, identifying
her ideal self as a “well-adjusted” paraplegic in a wheel-
chair. She desired paraplegia under level T12.
Her desire for paralysis had begun at age 5, when
she began pretending to be a crippled mother during play.
Her desire was reinforced by childhood exposure to dis-
abled relatives. At age 7 to 8, she played with 2 wheel-
chair-bound cousins who had cerebral palsy; she was
jealous that their physical and emotional needs were met,
while her own were not, as her parents were often away
at work. When she was 8 years old, a favorite cousin
became paralyzed after a hunting accident. She later saw
him at a family gathering and, despite her saying, “Look
at the poor cripple,” out of jealousy, he was kind to her
and, she said, “treated me like I was special.” When she
was 13 years old, this cousin lived with her family for a
short time. This was when her paraphilia began to man-
ifest. Her first masturbation and orgasm centered on
fantasizing about her paralyzed cousin’s wheelchair and
atrophied legs. Her husband is able bodied; however, she
fantasizes about having a paraplegic lover. She has mas-
turbated to pictures of disabled women in addition to
images of disabled men, and she reports that images de-
picting people with more severe disability are more
arousing.
r 2012 Lippincott Williams & Wilkins
Paralysis Desire in Body Integrity Identity Disorder
She has simulated paraplegia in various ways. When
sitting, she constantly pretends that she is in a wheelchair
instead of a regular chair. She transfers from her bed to a
chair in the manner of a paraplegic, or manually adjusts
her legs as if they were paretic. When she was delivering
her first child, she was given epidural anesthesia that
paralyzed her below the waist and “felt wonderful.”
DISCUSSION
All of the participants in our paralysis-BIID group
said that their body incongruity evolved from an interest
in disability and paralysis in early childhood, and most
first recognized their desire for paralysis at or immediately
before puberty. All participants indicated a specific level
at which they desired, at the least, partial section of the
spinal cord (eg, note that participant 14 wished to retain
normal bladder and sexual function). They chose levels
based either on their knowledge of the level of injury re-
quired to bring about the desired disability, or on their
personal perception. For example, 1 participant wanted
her paraplegia below a “spot” on her spine that felt “dif-
ferent” to her; another wanted hers at a place where she
had a feeling of pressure. All participants wanted to be
wheelchair-bound but otherwise functional and self-suffi-
cient with use of their upper limbs, and many acknowledged
the medical problems associated with paralysis.
Nine of the participants reported that they were
sexually aroused by the idea of being paralyzed and/or by
people with paraplegia. The degree of paraphilia varied
greatly, from acknowledging that paralysis is attractive but
not essential in a partner, through to obsessive fantasizing
about one’s partner being disabled, and/or preferring dis-
ability-oriented pornographic material. Although 1 person
said that pretending was not satisfying, all indicated that, at
the very least, they had used mental imagery to pretend to
be paralyzed. Many supplemented their mental imagery
with physical pretending using a wheelchair or spinal brace,
or by transferring from bed to chair as if paralyzed. Most
were reluctant to pretend in public, unless they were far from
home, for fear of being seen by family, friends, or colleagues.
In participant 6, routine electrodiagnostic exami-
nation revealed normal motor-evoked potentials in both
arms (motoneuron pool [C8/Th1]) and legs (L4/L5), and
unremarkable sensory-evoked potentials (bilateral tibialis
stimulation). Disturbance of cortico-peripheral con-
ductance is, therefore, unlikely to be the trigger for at
least this person’s desire for paraplegia.
Here we describe the largest sample yet reported of
individuals with paralysis-BIID. Although our 84-person
study of paralysis-BIID and amputation-BIID was not
epidemiological, it did show a higher proportion of
women among participants with paralysis-BIID than
among participants with amputation-BIID. These sex-
related differences match those of previous studies.2,4 The
sex-related difference in the manifestation of amputation-
BIID, in which more women than men desire bilateral or
greater amputation, may extend to the ratio of men to
women in the manifestation of paralysis-BIID.
www.cogbehavneurol.com | 39
Giummarra et al
Possible Explanations of Sex-related Differences
in Body Incongruity
There are several possible reasons why women with
BIID are more likely to desire bilateral amputation, or
paraplegia, than men with BIID. First, women are typi-
cally more likely than men to volunteer to participate in
research; perhaps the increased incidence of women pre-
senting with paralysis-BIID simply reflects this sex dif-
ference. This explanation is unlikely, however, as our
larger study, like most BIID research, still recruited sig-
nificantly more men, most desiring unilateral amputation.
Second, perhaps men are more physically active than
women and feel that they require at least 1 functioning leg
so they can continue to walk. Or perhaps women crave
dependence, to draw attention or sympathy to them-
selves.4,5,11 Most of our study participants, however, were
adamant that they were not seeking dependence, but
rather wished to restore their identity to what they had
always felt it should be. Furthermore, people with BIID
are typically not seeking attention and are financially se-
cure, making this disorder a separate clinical entity from
Munchhausen syndrome.12 Further still, these sex-related
differences in BIID parallel sex differences in suicide
methods, in which women prefer poisoning and men
prefer shooting.13 One can acquire paraplegia with much
less violence than is required for amputation. Again, this
explanation is unlikely, considering that women desiring
amputation typically want 2 or more limbs removed.2
Extending the Neuropsychological Model of
BIID
A final explanation implicates brain differences in
representation and processing of body information, body
satisfaction, and sex-related brain laterality. Currently,
neurological models of BIID implicate dysfunction in
right-hemisphere brain regions (eg, superior parietal
lobe)6,7 and networks (eg, frontoparietal)2 that result in a
failure to represent or process body information ad-
equately.6 Blanke et al2 argue for the predominant role of
the right hemisphere in bringing about body dissat-
isfaction, as the majority of people with BIID express a
desire for left-sided amputation. However, Brang et al7
reported the same deficits in processing of body in-
formation in a person who desired bilateral amputation
as in a person who desired unilateral amputation, both
cases implicating dysfunction in the right superior parietal
lobe. These right-hemisphere regions and networks have,
separately, been implicated in disorders of self and iden-
tity6 and in body dissatisfaction in healthy women.14 The
key role of the right hemisphere in global body satisfaction
and identity may also be responsible for the profound
experience of body dissatisfaction in BIID, manifesting in
the desire for bilateral amputation and/or paralysis.
A second neurobiological explanation of the greater
propensity for women to desire bilateral amputation or
paraplegia implicates sex-related brain laterality differences.
That is, women are less lateralized than men. A meta-
analysis of research on corpus callosum morphology re-
vealed that the corpus callosum is larger in women than
40 | www.cogbehavneurol.com
Cogn Behav Neurol  Volume 25, Number 1, March 2012
men.15 Enhanced connectivity between the cerebral hemi-
spheres may account for increased bilateral processing of
visuospatial skills16–18 and, more controversially, linguistic
performance.19,20 In relation to movement, Gorbet et al21
found simultaneous ipsilateral and contralateral activation
during visually guided movements in women, but primarily
contralateral activation in men. Apart from a dysfunctional
right superior parietal lobe,6,7 body incongruity may reflect
dysfunction in lower level somatosensory areas that mainly
represent contralateral limbs. The more pronounced bi-
laterality in women may explain their apparently greater
desire for bilateral amputation or paraplegia.
Limitations and Further Research
Until BIID is accepted as a genuine medical con-
dition with appropriate diagnostic criteria, it will be hard
to conduct a true epidemiological study of its incidence
and characterization (but see First and Fisher22). To date,
all research on BIID has relied on individuals with BIID
responding to researchers’ recruitment efforts, typically
through Internet-based support networks—a process that
likely results in a response bias. Some of these re-
spondents seem to be pushing an agenda: validation and
medicalization of the condition.
The key finding of this study is the emerging rec-
ognition that sex-related differences in manifestation of
desire for amputation extend to the desire for paralysis.
Even though women are more likely than men to belong
to Internet support networks and to volunteer for re-
search, these facts do not in and of themselves invalidate
our finding, considering that most of the participants in
our larger study were men.
Still, some recruitment bias may be responsible for
the sex-related difference that we found. For instance,
websites representing the interests of persons who desire a
paralysis may simply be more female-friendly than sites
serving persons who desire amputations. Although such a
bias would not explain why, even among persons with
amputation-BIID, the proportion of women who desire
bilateral operations is higher, other recruitment biases
cannot be entirely excluded. Ultimately, to confirm the
model that we have presented, we need neuropsycho-
logical and neuroimaging data implicating possible lat-
erality and sex-related differences in paralysis-BIID.
Because few previous studies have characterized the
manifestation of paralysis-BIID, our study was of ne-
cessity exploratory. We based our questionnaire on what
we knew from studies focusing on amputation-BIID, and
we asked our participants with paralysis-BIID to describe
the manifestation of their variant. For several reasons, we
could not obtain further information from our study
participants. Most people with BIID are reluctant to di-
vulge identifying information, for fear that family and
friends will ostracize them or treat them as though they
are mentally unsound. Indeed, many of our participants
chose to hide their identity by using pseudonyms and/or
temporary email addresses. Thus, we could not follow up
with all participants, a limitation that is a weak point of
our study.
r 2012 Lippincott Williams & Wilkins
Cogn Behav Neurol  Volume 25, Number 1, March 2012
Furthermore, because our participants came from all
over the world through the Internet, we could not interview
each participant to ascertain, for example, whether he or
she met additional Diagnostic and Statistical Manual of
Mental Disorders criteria or even genuinely had BIID.
However, as we recruited exclusively from forums and sites
dedicated to BIID, we assume that our volunteers truly
were people with BIID drawn from the online community,
and/or people who had come across the study while seeking
information about their condition.
There is, as yet, no standard scale to investigate
BIID. Now that several exploratory studies characterizing
the manifestation of BIID have been published,2,4 it is
time for a BIID inventory to be developed.23 This scale
should serve several purposes:
 Investigate how identity is disrupted in BIID and how
this disruption manifests in the desire to be paralyzed
or undergo amputation
 Tease apart functional and visual components, for
example, in the case of paralysis-BIID, the need to use
a wheelchair, or the desire to be seen to need to use a
wheelchair
 Document the awareness of, or, indeed, the desire for,
the complications that can arise from amputation or
paralysis, for example, in the case of paralysis,
incontinence, sexual dysfunction, pressure sores, mus-
cular atrophy, spasticity, and phantom pain
 Investigate systematically which aspects of amputation
or paralysis attract erotic interest, either in becoming an
amputee/paraplegic or in other people with amputation
or paralysis, for example, the identity component, being
a “resilient hero,” becoming more dependent, losing
sensation, losing motor function, or requiring aids such
as urinary catheters, wheelchairs, braces, and home
modifications
Further research should include other validated
scales and/or interviews to measure the incidence of co-
morbid psychological and psychiatric disorders, such as
depression, anxiety, somatization disorders, and body
image disorders like anorexia nervosa.
CONCLUSIONS
Our study provides unique insight into possible
mechanisms underlying the desire for paraplegia, fitting
within existing neurological models of body incongruity.2
Further research must now investigate the impact of sex
(genetic, morphological, or preferred orientation) on the
development of body incongruity, and the separate con-
tributions of identity and sexuality to its manifestation. A
purely neurological account would likely be inadequate,24
but the relative contributions of psychosocial and neu-
rological abnormalities wait to be determined.
ACKNOWLEDGMENTS
The authors thank the BIID web forums and online
support groups for allowing us to correspond with their
members; Dr Neil Levy, University of Melbourne, for early
guidance in study design and recruitment; and Dr Konrad
r 2012 Lippincott Williams & Wilkins
Paralysis Desire in Body Integrity Identity Disorder
Weber, University Hospital Zurich, for assessing the motor-
evoked and sensory-evoked potentials in participant 6.
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