CODI: Cornucopia of Disability Information

Love, Sex and Disability: Maintaining Interest and Intimacy

Love, Sex and Disability: Maintaining Interest and Intimacy


Harlan Hahn, Ph.D.
Professor of Political Science
University of Southern California
Polio Survivor

Sharon Bacharach, M.S.W.
Clinical Social Worker
Daniel Freeman Memorial Hospital
Inglewood, California

__________________

A Historical Overview

Hahn: My name is Harlan Hahn. I'm a professor of political science at
the University of Southern California, which hardly qualifies me to
speak about the topic that we're going to be discussing this
afternoon. But fortunately we do have someone with us who is qualified
by her training to talk about this issue. That is Sharon Bacharach
from Daniel Freeman Hospital.  I'll try to explain a bit about my
investigations of the historical evolution of disability and
sexuality, as well as my own experiences as a person who has been
disabled since the age of six. Then Sharon will provide a professional
perspective on this subject.

I have been involved in the study of disability as a research subject
and in the disability rights movement as an activist for a number of
years. One of the things that has occurred during the last decade is a
major shift in perceptions. For a long time disability has been
understood primarily as a functional problem. The focus has been on
limitations or impairments.

In recent years, however, there has been an increasing interest in
people with disabilities as a minority group and in
anti-discrimination legislation such as Section 504 of the
Rehabilitation Act of 1973 and the Americans with Disabilities Act of
1990. Accompanying these trends, reflecting the growing focus on the
social dimension of disability, has been a mounting concern about
disability and sexuality. For many years, however, I had the feeling
that this research may not have been as helpful as it could have been,
because most writing about sexuality and disability was what I called
the "permission giving" variety. They gave you permission to do it,
but they didn't tell you with whom, how, or when. So the essential
questions, it seems to me, remain unanswered.

Disability and Gender
 
In addition, there has been increasing interest in the interaction
between disability and gender. This started a number of years ago with
a research study on women with disabilities which was appropriately
subtitled "Sexism Without the Pedestal." The study noted that women
with disabilities were doubly marginalized. They were marginalized
because of the disabilities and because of their gender.

Of course, that raised the question, What about men with disabilities?
There still is little significant research on this subject. However,
I'm increasingly convinced that if women are doubly marginalized by
disability, disabled men are at least conflicted by their two dominant
physical characteristics. They have different aspects of their
identities, one which society values, and one which society
disparages. That's bound to create internal conflict. And,
unfortunately, most men with disabilities have identified primarily
with their gender rather than seeking to develop a new concept of
masculinity that encompasses their experience as disabled persons.

I want to introduce a couple of other concepts from feminist theory
that may help us work our way through an understanding of the subject.
A major contribution is represented by the notion that the personal is
political. The perspective basically erased the traditional
distinction between public and private spheres of life; it made us
realize that even the most intimate questions in our lives are
significantly affected by broader social and political developments.
In addition, feminist research has developed the concept of sexual
objectification. Some writing has included the observation that while
women have frequently been treated as sex objects, people with
disabilities often have been treated as asexual objects. We become
mere things. We are robbed of our humanity by perceptions that we are
sexless or undesirable.

The other element of feminist thought that seems pertinent here is the
concept of the male gaze, or the tendency to view images, and
especially sexual features, from a man's point of view. There is a
disability equivalent to that, too. In Western culture, disability has
conveyed a double message for a long time. From the Roman Saturnalia
to the medieval Feast of Fools, people with visible bodily differences
or disabilities were sometimes viewed as sex symbols. But disability
was also perceived as a sign of divine punishment, particularly for
sexual transgressions.

Why Children Are Born Disabled: Early Interpretations
 
These interrelated but contradictory notions coexisted for centuries.
In Christian thought, St. Augustine used the example of disabled
newborn children as definitive proof of his notion of original sin.
Augustine sought to demonstrate the fallibility of human beings. Adam
and Eve, he said, engaged in original sin; the sin was sex.  The
continuing evidence of original sin, for Augustine, was the birth of
disabled infants. He claimed that God would never have wanted babies
to be born with a disability, so the fault must be ascribed to
humankind.

Subsequently, interpretations of the birth of disabled children
underwent numerous modifications. For example, the theologian Gregory
of Tours had a couple in his parish who gave birth to a disabled
child. Gregory discovered that the parents had had intercourse on a
day on which it was forbidden. So, of course, this phenomenon
reflected God's punishment for their sin. But Gregory finished the
story by saying everything worked out happily after all, because the
child found a job with a traveling freak show and was taken care of
for the rest of her life. That gives you an idea of how people viewed
disability at that time.

Another development was the concept of the changeling. In the case of
two parents, both of whom had led seemingly pious, irreproachable
lives, the belief emerged that they had given birth to a healthy
child; but, in a fraction of a second, when their backs were turned,
the Devil came, stole the healthy child, and left the disabled child
in its wake. In the Renaissance, the birth of a disabled child was
treated as a portent of the future. Later, other notions were used to
explain the birth of disabled children, such as intercourse during
menstruation. In the 18th century, one of the prevailing theories
about this event was the improper use of the imagination during
conception. All of these explanations reflect the extent to which the
symbolic representation of disability in Western culture becomes
intertwined with the interpretation of sexuality and punishment.
Simultaneously, prevalent cultural understandings of disability
communicated another message, which we have lost sight of today: the
legacy of disabled people as sex symbols.  We were the world's first
entertainers. In ancient Rome, there were records indicating that, for
example, disabled slaves fetched a higher price because they were used
as entertainers, particularly at events such as the Saturnalia. Part
of the appeal may have been curiosity; but these patterns also seemed
to reflect a disruption of social hierarchies signified by physical
appearance. The Saturnalia was a strange observance involving revelry
and debauchery in which roles were reversed, so that masters became
slaves and slaves became masters for a brief time. This tradition
continued through the Middle Ages in the Feast of Fools, which was a
similar observance, including a comparable role reversal with the same
kind of leadership by physically different or disabled people.

Thus, disability became associated in the popular mind with punishment
for sexual transgressions, and this was the dominant tradition. But
there was also an underlying subversive tradition associated with
disability as a symbol of the relaxation of ordinary moral restraints
on human behavior during events such as the Saturnalia and the Feast
of Fools.

Disability and the Dating Game Today
 
Well, that's our historical legacy. It shapes, in many ways, the
perception of women and men with disabilities today. The principal
difference is that, in the modern era, the idealized image of physical
appearance and attractiveness, which is widely disseminated in the
mass media, has overshadowed and outweighed these earlier traditions.
Those of us who project a visibly different appearance to the rest of
the world are shouldered with particular burdens and responsibilities
in the modern era.

To be completely candid, my research and my own experience tell me
that many adults with disabilities who seek an appropriate mate are
not operating on a level playing field.  Like most activities in
modern society, the search for conjugal partners is a competitive
process in which men and women who approximate cultural ideals of
physical attractiveness enjoy a decided advantage. Ever since the
concept of romantic love replaced arranged marriage as the basis of
family formation during the Enlightenment, physical attraction has
been considered an indispensable foundation for intimate
relationships.

Even persons who have difficulty in forming such relationships are
usually advised to concentrate their attention on someone whom they
find attractive. And yet, the perceptible signs of physical
differences or disabilities are commonly regarded as unattractive. In
fact, as the concept of asexual objectification indicates, conspicuous
disabilities may be viewed as synonymous with unattractiveness.
Obviously, this context poses mammoth obstacles for women and men with
disabilities.

Perhaps part of the solution might be found by engaging in a
continuous struggle to promote a counter-cultural understanding of
physical appearance and attractiveness.  Constant strivings to imitate
cultural standards of physical beauty impose an oppressive burden on
everybody, especially on women. We could seek to revive the earlier
association between sensuality and physical differences or
disabilities. For myself, I would prefer to live in a society that has
learned to appreciate the value of differences and to avoid the
conformity of similar appearances. But I realize that this objective
may not satisfy the pressing concerns of many adults with
disabilities.

Another recommendation revolves about the familiar caveat regarding
the need for additional research. In a paper prepared for this
conference, for example, I noticed that approximately 60% of the polio
and stroke samples, as compared with more than 70% of the nondisabled
sample, were either married or cohabiting. These statistics prompted
several questions. How did these disabled persons manage to form such
relationships? Were their spouses disabled or nondisabled?  Were these
relationships satisfactory? What is the correlation between marital
status and age of onset or the severity or visibility of a disability?
We can learn much from each other, but we need increased research
support to compile and distribute this information.

I can also offer some thoughts derived from my own experience.  One
suggestion concerns what I call the dysfunctionality of denial. I
found, for example, that when I was wrestling with the issue of my
acceptability to the opposite sex, therapists and others gave me one
of two messages. One message was, "There is nothing wrong. Disabled
people can find suitable partners as easily as nondisabled persons. I
don't see why you're troubled by this."  The other was, "There's
nothing that can be done. That's just the way things are. You can't
possibly change them." Neither message was true, and neither was
particularly comforting.  What no one gave me was a way to work within
the gray area between these extremes. There was no value in denying
that my disability reduced my chances of finding a mate, or that the
situation was hopeless.  One lesson I learned was what I call "the
inappropriateness of equity theory." In the psychological literature,
equity theory refers to the notion that you ordinarily find people who
are most compatible with you among those at equivalent levels of
social status who share your interests and concerns. In my own
experience, I've found that is not necessarily true.  Disability is,
let's face it, a liability. But we do not have to "settle" for someone
who is undesirable. I have found the most satisfactory, easiest kinds
of interactions with people who share stigmatized liabilities rather
than with members of the dominant majority. Members of other
minorities are frequently people with whom I can get along readily
because we have had a similar set of experiences at the hands of the
dominant culture.

Coping with Rejection
 
Another major issue concerns the problem of rejection. In 1981, I
wrote an article for a journal called "Sexuality and Disability." In
the course of summarizing the existing social research on sexuality
and disability, I inserted some parenthetical comments about my own
experience. Included was my assessment that, out of every 20 women I
met who might be eligible or available under other circumstances, at
least 19 of them would want to have no further interaction with me
because of my disability. That's an estimate that I acquired on the
basis of my visceral feelings as a result of living with a disability
for many years.

Then I calculated the probabilities and concluded that the prospects
of finding a partner eventually are rather remote.  I really expected
sex educators and other professionals to say, "No, that's not true at
all." I was crestfallen when no one said a word. I don't know if that
means they were conceding the point, or that they discounted my
estimates. But it does suggest the need for self-help groups or other
means of helping disabled women and men cope with the impact of
constant rejection.

One development that has been of immense significance to me is the
movement to redefine the identity of people with disabilities. We are
now beginning to discover a cultural history containing positive
elements that we can contribute to the rest of society. I emphasize
this movement not only as a political vehicle but also as a means of
projecting a new interpersonal image. I believe that disability
affects everyone in different ways; but I also maintain that once you
acquire a disability, you never see the world the same way as before.
I think that this difference, the ability to have experiences not
shared by most members of society, is an amazing source of creativity
which, if we can tap into it, will allow us to offer insights that are
virtually unavailable to others. In my own case, I'm convinced that
everything I have done creatively in my academic research stems
directly or indirectly from my disability experience. I may see
problems in a different light than my non-disabled colleagues, and
perhaps occasionally I've been able to gain some helpful ideas from
this experience. In addition, such creativity often leads to
empowerment.

This is the kind of redefinition of identity that some people with
disability need to acquire, because, after all, coping with a
disability is not an easy experience. Disability communicates
different, mixed, and even eclectic messages, but this experience can
yield positive contributions as well as negative social reactions.

__________________

How Disability Affects Intimacy

Bacharach: As Harlan has told you, my presentation will be from a
different perspective. I'm going to talk more about how disability
affects your intimate relationships. Most of my professional
experience has been with people who have had strokes in their family,
and my presentation will reflect that; but in dealing with sexual
issues, there are similarities that pertain to all disabilities. Some
of these common threads are loss of functioning, adjustment to life
and physical changes, the family's or significant other's adjustment,
and the effect of disability on the relationship.  Whether the
disability is recent or dates back 30 years, certain adjustments are
inevitable. Everyday activities such as walking, cooking, and
fulfilling personal needs are affected. Some people need an assistive
device, a wheelchair, a cane, a walker. Some feel that they have aged
ten years overnight with their disability.

With a stroke, there may be speech or thinking difficulties so that
communication with family members and friends becomes difficult. It is
extremely frustrating to be unable to express needs and feelings.
Family members and significant others want to communicate with this
person as before, but they can't. The increase in dependency resulting
from the disability can lead to role changes between husband and wife,
parent and child.  For example, a person, often the husband, used to
handle finances, drive, take care of everybody else; now somebody else
has to take on this role.

Loss of employment or occupation, along with other changes, can result
in lowered self-esteem. The person may no longer strive for
independence but instead may take up the role of an invalid. Some
people feel isolated, lonely, unattractive, and worthless. Many become
depressed. The significant other or family member, in turn, becomes
anxious. How do you deal with this person, how do you help him? It is
important to remember that some period of depression is normal in
these circumstances. It helps a person begin to deal with his losses
and his role functions and begin to accept the changes. If the
depression becomes severe, counseling may be necessary.

Any disability has a strong effect on a relationship. It can bring out
a couple's devotion to one another so that they build on their
existing strong relationship; or it can pull a couple apart,
intensifying existing conflicts. A disability is an added stress to
any relationship. How you've handled stress in the past will affect
how you'll handle this particular stress.  It is important not to
blame anybody; it's no one's fault.

Good Communication Is Essential

Communication is extremely important in dealing with any kind of
change. Whether or not you have a significant other, it's important to
share information to help people understand what you're going through.
For family, friends, and significant others, it's important to ask
questions, because this can result in increased comfort, closeness,
trust, emotional safety, and can result in truly, deeply knowing one
another.

Expression of intimacy takes many forms in addition to sexual
intercourse. Talking, looking into each other's eyes, holding hands,
huggingÄall are ways of being intimate. Much depends on one's
patterns of communication and intimacy throughout life.  A patient of
mine who had a stroke at age 43 wanted to wait to have intercourse
with his wife until his leg and his arm got better. They refused to
talk about it; it was a silent understanding between them. I
encouraged them to talk to each other about their fears, to help each
other cope and adjust to their present situation. Their lack of
communication was a real hindrance to their intimacy, and other
stresses developed.

Many disabilities result in mechanical difficulties, from decreased
mobility, loss of sensation, perceptual changes, emotional
complications, and effects of pre-existing sexual problems. There can
be some sexual functioning problems such as with erections and
ejaculations, especially after a stroke. This is because of the
possible effect on the autonomic nervous system, which affects such
responses as bowel, bladder, and sexual functions. With polio, it's my
understanding this might not be the case. If a person has these
difficulties, it can result in a decrease in frequency of intercourse,
duration of foreplay, caressing and touching, and a decrease in total
sexual experience. Some medications can also have an effect on sexual
functioning. If decreased sensation occurs, it may be helpful to
caress areas that are intact, and to use imagery while caressing areas
that are not intact.

The degree of physical disability can affect the amount of sexual
difficulty. Conditions that may already be affecting your sexual life
include diabetes, coronary artery disease, hypertension, chronic pain,
and fatigue. It is also hard to feel intimate when you don't feel
well. It is important to check with your doctor to find out what is
medically safe, to relieve your fears that sexual activity could cause
further damage. Usually there is no risk in having sexual intercourse
after a stroke or with polio, but do check with your doctor for
hypertension or heart problems that may affect it.

Achieving Intimacy After Stroke

Communication problems following a stroke present a particular threat
to sexual intimacy. Some disabilities, especially strokes, involve
what is called a visual field cut. In this situation you may neglect
one side of your partner's body, and it's important to communicate
with each other to help facilitate a more satisfying sexual
experience. There may be a change in your sexual behavior. You may
need to change your usual positioning. It is sometimes helpful for the
disabled person to be on his or her back, or for both people to be on
their sides. With a stroke, it might be important to be on the
affected side, so the unaffected side is free to caress one's partner.

Sexual activity is greatly affected by feelings of dependency.  It is
very hard to think of your partner romantically when you're being
cared for, or he or she is caring for you. The extent of paralysis can
affect your mobility and this may make sexual activity very difficult.
This can affect your self-image, and it's difficult to share yourself
with someone when you are not comfortable with yourself. Following a
disability, some people fear they won't be able to perform according
to their partner's expectations. This can result in "spectatoring,"
which is the removal of yourself from an active sexual role; you
become preoccupied and attempt to observe and evaluate yourself and
your partner's performance. The result is a loss of intimacy and
involvement.

Aging itself can cause change in sexual functioning. For the male,
there may be a lengthened refractory period, the amount of time
between ejaculations; also a decrease of volume of ejaculation. It may
become more difficult to have an erection, and more stimulation may be
needed. For women, an increased vaginal dryness is common. Despite
such changes, many people have fulfilling sexual lives into their 80s
and 90s.

Again, I want to emphasize that good communication is absolutely
essential! It is important to express your fears and thoughts to each
other. Counseling might help. Let's say the husband, who is disabled,
doubts that his wife could possibly find him sexually attractive; the
wife just might be concerned about safety. These concerns can come out
when counseling is facilitated. It's also important to look into how
the disabled person can learn to do some things for himself or herself
more safely. If this is impossible, it may be necessary to hire an
outside caregiver so that the partners can concentrate more on their
relationship.

If there are verbal communication problems, try to increase nonverbal
communication. Caresses and loving touches can be understood by all.
It might be important to speak to your doctor about how sexual
activity affects your physical health and about the side effects of
medication. Many people have difficulty talking to their doctors,
especially about sexual issues. Being human, some doctors will also
have difficulty talking about this issue. But if you have specific
questions, be persistent.

__________________

Discussion

To protect the privacy of participants, comments and questions from
the audience are condensed and paraphrased here.

A woman voiced her concerns about rejection.

Hahn: I'll talk about this issue because that's the story of my life
too. I don't have any easy answers. I know it was complicated in my
case because I had polio at an early age.  During most of my
adolescence, I was totally preoccupied with my school work, seemingly.
That's the image I wanted to project because it was just so scary;
particularly as I was not one of these perfect creatures you see in
the movies and on television. One of the things that helped me was the
realization that I was being tested in learning how to cope with
social rejection.  A comment on being uncomfortable in social
situations.

Hahn: You're not going to meet anyone by staying home.  Sometimes you
have to put yourself out there, make the extra effort, which is
particularly difficult if you have a disability. One approach is to
try finding alternatives both within our group and in other groups.
One person with whom I have worked closely in the disability rights
movement has taken the position that we should just deal with each
other; we'll date other disabled people exclusively. I went through
that process; and, for a long time, I would only go out with disabled
women. That worked for a while and then, later, it didn't work so
well, so I shifted again. I guess it's a constant process of
experimentation. There are no easy or quick solutions.

A woman commented that after her stroke, her boyfriend left her.

A man discussed responding to singles ads. In doing so, he disclosed
that he had had a stroke.

A man said he had no job because of his disability and thus no money
to go anywhere.

A woman commented that you're likely to meet a dating partner when you
least expect it; that it doesn't work to always carry a sign that
says, "I'm single and available."

Hahn: I can tell you one thing from my experience. For many years, I
was always delighted when somebody fixed me up with a blind date
because I figured the person would have been told in advance that I
used crutches or a wheelchair and would then be able to make a
decision as to whether or not she wanted to see me. In ordinary
contexts, I was never sure how the other person was going to respond.
That certainly increased my sense of confidence. I felt more at ease
and more relaxed.

A woman said her husband's disability was never a factor in their
relationship when they dated. In her mind, he wasn't handicapped. When
he went into high school, he made a decision to find out "who he was,"
and learned that, among other things, "he was also handicapped." She
wonders if "having that self-image makes the difference in how you
come across."

Hahn: It also depends on how disability is understood culturally. From
my own perspective, I found it necessary to redefine my sense of my
identity around my disability at a certain point in my life because it
shaped the way that other people perceived me. When I attempted to
block it out of my identity, or pretended that other people blocked it
out, we seemed to be operating somewhat artificially. I also thought
there were important political reasons for incorporating disability as
part of my identity. But I understand it as a positive component and
not a negative aspect of my identity.

A man said that his partner, who had polio at age 12, does not respond
sexually. In response to questions, he said that the problem has
become much worse lately; that she finds intercourse to be painful.

Bacharach: There may be other medical factors besides polio involved
in why she doesn't respond sexually. It's important to discuss this
openly with her, and to let her know how you feel about it. Has she
communicated her feelings to you? Does anybody have a response to help
this gentleman?

A woman said her partner is a morning man, and she's a night person.

Bacharach: So you don't want to have sex at the same time?  The
previous speaker: I think men should be ready any time.

Bacharach: Maybe you can compromise? Perhaps that has something to do
with your situation [to the man whose wife does not respond sexually].
Do any of you feel that you don't want to have sex when you are
uncomfortable, or in pain? That is a common problem with a lot of
people. So it's not necessarily she is rejecting you, it's that she's
in pain. She might feel that you don't understand that is why she
doesn't want to have sexual relations. In that kind of situation
counseling might help because it's really important to communicate.

A woman: She might see a gynecologist to find out what possible
physical problems there could be, such as hormonal problems.

A woman referred to research by Masters and Johnson.

Hahn: They had promised to make a major research thrust into the area
of disability. But most of the early research was unrelated to
disability per se. Masters and Johnson or Helen Kaplan's book, The New
Sex Therapy, will give you basic information. Techniques like sensate
focus are readily transferable.

A reference was made to vibrators, pornography.  Bacharach: Whatever
people feel comfortable with, they can use.

Hahn: As I reviewed my own life history, I discovered that I was
brought up in an extremely moralistic part of the country; also my
parents were very puritanical. When you combine that kind of
socialization with disabilityÄno wonder I wanted to be a monk. Part
of the process of recapturing our sexuality may involve working
through the moralistic indoctrination many of us have received that
gets in our way later in life.

A man: I've never been in a support group but it seems to me that
might be an environment where people already accept disability; it
might be a place to meet people who are already acceptable, including
caretakers, who already are comfortable with disabled people.

Hahn: For a number of years, there was a dating service specifically
for people with disabilities. Sometimes life gets difficult in the
outside world. Most people with disabilities interpret other people's
nonverbal behaviors. Sometimes we read them incorrectly, but often we
are right; and, frequently, they are not as warm and friendly as we
would like them to be. In the face of those kinds of responses, we
sometimes need to turn to our own community for resources. Do you get
a sense that an inordinate amount of rejection is a common problem
among people with disabilities?

A woman: It is not . . right out . .

Hahn: It's never very honest, is that what you are saying?  That was
exactly my experience for years. Most of my personal relationships
ended before they beganÄwithout much honesty. I would usually hear,
"Oh, you're a wonderful person." Don't you hate that one? And then the
next line would be something like, "Oh, it's not because of your
disability." I sensed that wasn't true. I understood that women wanted
to protect my feelings, but I could not escape the impact of the
impression that I was lied to.  So it has sometimes been difficult to
take people at face value.

A man: Take it one more degreeÄyou go through a stroke and then a
divorce . . and your friends start choosing sides and all of a sudden
your whole social being, everything changes 100%. People who were your
friends for 13, 14, 15 years all of a sudden don't know your name.
It's a hard pill to swallow. I go on my way. People don't have time
for me. Bye. I'm a better person for it too.

A divorcee who had several relationships after her marriage ended said
she no longer had the energy to actively seek a sexual partner.

Bacharach: So other things have become a priority rather than having a
relationship? Like your health and other things?

Divorcee: Yes. I've reached a point where I knew no one was going to
come to take me; so I go out every day, somewhere; and then I go home
and I'm alone, but that's all right because I'm too tired to do
anything else. When I got divorced, I lost my friends, but I got some
new friends. I found another group of women that I can enjoy. And this
will open doors to other groups. Because I am a people person; if I
stay by myself, I'll go crazy. So sex hasn't become the big issue
because I've learned to take care of that situation myself. I think
that single people need to adjust to what is going on in their lives
and face up to it.

__________________

How Disability Affects Intimacy

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