A physically disabled individual engaging in sexual activity has been an
image not entertained much by mainstream society. However, if an individual
is born with or acquires a physical disability during his or her life span,
the issue of sexuality becomes one of the most important factors of
existence. How is the desire to feel sexually attractive any different
between able-bodied and disabled persons? Why should this topic be any more
important to disabled persons than able-bodied persons? The answers to these
questions are really quite simple.
Although sexual attractiveness and expression may not be a factor of greater
importance to persons with physical disabilities, when compared to
able-bodied individuals, it is an altogether different experience. Disabled
persons are not simply a different version of able-bodied persons. Far from
it, they comprise a community of individuals with a unique culture filled
with social expectations different from able-bodied individuals. These
differences are most notable in societal norms and behavioral expectations,
including specific assumptions regarding the sexuality of this group. More
clearly, these differences are not based upon differences in being human or
possessing human emotions, but lay within the realm of what is deemed
sexually desirable.
Not Necessarily Negative
Disability in general has been viewed by academicians, physicians and
society at large as inherently negative. While at times living with a
disability is difficult, socially isolating and architecturally problematic,
the disability status itself holds no value. Specifically, a physical
disability is not positive or negative, it is simply a state of being in the
world similar to gender or ethnic status. Negative circumstances arise
mostly because the physical world and social norms were created without
persons with disabilities in mind. Thus, given the fact that it is difficult
to live in the given environment and function under social standards that do
not include disabled persons, it is not surprising that disabled persons are
categorized as being bitter or mad at the world. Yes, given the fact that
the world can appear unfriendly to this community, it is no wonder negative
feelings are evoked at times. However, it is not the disability itself that
is responsible for the elicitation of these feelings of anger or
frustration; it is the surrounding social, environmental and political
world.
Negative representations of disabled persons in the media are rampant in
television, films, print material and radio. For the most part, persons with
disabilities are portrayed as individuals who subscribe to the belief of
death before disability. In addition, the sexuality of disabled persons
has been shown in one of two manners: either disabled persons are shown to
be overly capable lovers focusing all attention onto their partner, not
acknowledging their own sexual feelings or desires, or disabled persons are
shown as sad, bitter individuals, reciting the commonly known line, I'm
only half a man/woman now that I'm disabled. These images have obviously
filtered through to society and have influenced the creation of commonly
held views about the ways that disabled people feel about and express their
sexuality. While this type of illustration of sexuality and disability in
the media has changed in recent years, with some writers and directors
becoming more well-versed with disability-related issues (in addition to
more disabled actors and actresses being hired to depict disabled
characters), some negative images can still be seen on prime-time television
and in feature films.
Are You Human Enough?
The sexuality of persons with physical disabilities has been a topic
explored by both psychological and medical researchers for the past 25
years. However, it is an issue discussed infrequently in daily social
conversations, in addition to being often omitted in books and lectures
focusing upon human sexuality. Why does this occur? For the most part it is
based on the fact that historically people with disabilities have been
viewed by medical practitioners and society in general as freaks, not
fitting into the category of human beings.
Interestingly enough, a commonly question asked of people with disabilities
is, Can you have sex? The root of this question lies in this nonhuman
theory described above. Human beings are born with sexual drives and die
with these drives regardless of ethnicity, sexual orientation and disability
status. While these other minority groups may be mocked or questioned about
sexual styles or expression and specific community sexual practices, this
process goes one step further for disabled persons. That is, the original
question is actually asking, are you human enough to have sex? This is
clearly not a question of how do you do it, but rather a questioning of
capabilities physically to execute sexual behavior deemed appropriate by
able-bodied sexual norms and standards.
An alternative explanation of the can you have sex question may be that
individuals are wondering if persons with disabilities are capable of having
penile-vaginal intercourse similar to heterosexual able-bodied individuals.
Once again, the question remains, How really different and weird are
disabled people compared to the norm? Is penile-vaginal intercourse the
only form of sexual expression practiced by able-bodied individuals? Well,
of course not -- able-bodied persons engage in a wide range of sexual
behaviors. In fact, the same holds true for persons with physical
disabilities. However, questions and misinformation surface because these
topics are not discussed in detail in much of the mainstream literature
available on human sexuality. In order to explore fully sexuality and
disability-related issues, some basic facts and information must be
discussed.
The Physical Disability Factor
Concerning sexuality, persons with different types of sexuality may
experience difficulties with sexual activity more so than others. Two
issues surface under this realm of discussion: nature and physical
abilities. The nature of the disability refers to the type of disability
a person has which includes mobility impairments, visual impairments and
hearing impairments. To complicate matters further, individuals with
these given conditions vary within their own category, in terms of
personal identity and physical functioning. The second part of the
disability factor is that of one's physical abilities to engage in
certain sexual behaviors. Depending upon the nature of one's disability,
there is a wide range of personal ability actually, physically, to move
around. For example, it is often assumed that all persons who use
wheelchairs are paralyzed. While this may be true for some of the
community, there are also a large proportion of wheelchair users who are
not paralyzed. Discussion of factors that affect specific disabilities
is warranted in order to understand fully the breadth of issues that may
appear concerning sexuality.
Persons with visual and hearing impairments may experience problems with
communication with others, a factor that influences the initial meeting
of two persons, in addition to the relay of information about sexual
wants and desires. It is often taken for granted that eye contact is
usually the first step in establishing contact with a potential dating
or sexual partner. Blind and some visually impaired individuals do not
have this option available. How, then, does a first encounter play out
for these people? Other means of communication are employed such as
verbal gesturing, speech and touching of the hands and arms of the other
person. Subsequent initiation of sexual activity may be difficult unless
a comfort level of verbal communication has already been established.
Similarly, persons who are deaf or hearing impaired may have difficulties
with initial communication. A large majority of these individuals use sign
language as the primary or sole means of communication. Some persons with
hearing impairments are quite proficient in reading lips. However, this
means that the person with whom they are speaking must be facing them the
entire duration of the conversation. How do these ways of communication
influence the sexual lives of these individuals? First of all, sign language
is not a language known by much of the hearing world. Usually if a hearing
person has a friend, relative or lover with a hearing impairment than he or
she may know sign language. So what are the chances of meeting one of these
people in a social situation? Of course there is no steadfast answer, but we
must assume that most people do not know sign language.
Due to this communication barrier, initial meetings with hearing persons can
be difficult or may in fact be impossible. Dating or participating in sexual
activity with others who may have hearing impairments or deafness may at
times seem more inviting, based upon the ability to have a private
conversation. However, if a deaf person chooses to date a hearing person who
does not use sign language, then a sign language interpreter would most
likely be present. Imagine trying to have a steamy sexual conversation
through a third party! Thus, privacy is sacrificed in this process and, as a
result, sexual communication may be hampered. None of this, of course, is to
say that potential sexual and dating partners cannot learn how to utilize
sign language, which does occur often.
Persons with mobility impairments also comprise a varied group of
individuals. Some persons use crutches or walkers to ambulate due to
muscular, bone or joint conditions, while others use prosthetics due to
amputations of limbs or being born without an arm or leg. Persons who use
wheelchairs do so due to paralysis caused by stoke or spinal cord injury,
muscular or bone conditions, or limb amputations.
In general, wheelchair users experience a wide variety of physical agility.
Those persons who do not deal with a loss in physical sensation mostly deal
with finding comfortable body positions in which to engage in sexual
activity. Depending upon the disability status of a disabled person's
partner, physical limitations may or may not be that serious of a problem.
That is, when an able-bodied person is involved in sexual activity with a
mobility-impaired person, he or she may be able to move around, or move
their partner's body around, so that a mutually comfortable position can be
obtained for various activities. Whether it is kissing, touching, oral sex,
penile-vaginal intercourse or anal intercourse, individuals can negotiate
the most comfortable positions available.
For individuals with complete or total paralysis, a slightly different
process may occur during sexual activity. This condition usually arises
after a stroke or spinal cord injury. Therefore, a large adjustment is made
in terms of the ways that these individuals express themselves sexually.
Oftentimes, people must relearn how to be sexual by becoming reacquainted
with their bodies, which is best accomplished through self-touch and
discovering what feels good. With some individuals with spinal cord
injuries, depending on the level of injury, the ability to experience a
physiological orgasm is no longer possible. This presents a wide array of
issues because society has historically promoted sex in general as genital
and orgasm focused.
Persons with spinal cord injuries often speak about how difficult it is to
lose the ability to have the sexual release associated with having a
physiological orgasm, saying that as they become more familiar with their
bodies, they began to notice their increased level of arousal when different
areas of their body are stimulated. Whether it is the neck, ears, arms,
nipples or any area responsive to tactile stimulation, persons with various
forms of paralysis report feeling sexually aroused even if a physiological
orgasm does not occur. Some persons with paralysis even say that sexual
feelings have been moved into their heads, and that they obtain mental
orgasms in the place of physiological orgasms.
While communication may have been seen as more important to those with
hearing and visual impairments, persons with mobility impairments deal with
a fair share of these concerns as well. The ability to negotiate sexual
desires and comfortable positions can be quite difficult. Although it may be
better to discuss disability and sexually related matters prior to engaging
in activity, life circumstances do not always occur in this fashion.
Therefore, disabled persons will often practice what they will say in a
given situation before it actually happens. This provides the person with
less anxiety when the actual time to engage in sexual activity is present.
Partners of persons with disabilities sometimes feel as if asking questions
about potential sexual activity is offensive. However, if a given level of
trust and communication has already been established, questions of this
nature are usually welcomed by disabled individuals because it creates an
open forum in which to discuss these topics.
The Architectural Factor
Disabled people confront architectural obstacles that prevent access to
social situations on a daily basis. In order for individuals with
disabilities to leave the house and enter the real world, a great deal of
planning and scheduling usually takes place. Barriers exist due to
transportation, communication and monetary reasons. Because of these
factors, persons with disabilities may have limited experience in the
dating and sexual domains of life, which further heightens anxiety in
these particular situations.
As an example, let's consider the potential difficulties confronted by Bob,
a blind person, going on a dinner date to a restaurant. First, he would have
to arrange for transportation, especially if the dating partner were also
blind or visually impaired and could not drive. This would include finding
how much it would cost for a taxicab or a bus. The bus route would have to
be navigated and an estimated amount of time known. Furthermore, the route
to gain entrance into the restaurant must be known, so that he would know
how to map out his plan to get into the restaurant after arriving to the
given location. Before he arrives to any given restaurant, he would need to
know if the menu was available in Braille. If it were not available in this
fashion, he would have to depend upon another to read the entire menu, which
is not a desirable option. Obviously, this would not be a completely
spontaneous evening. However, this does not mean that this would not turn
out to be a spectacular romantic and sexually provocative date; it is simply
different from the norm.
Communication difficulties also arise with persons with hearing impairments.
Consider Cindy, who is deaf and uses sign language to communicate and would
like to go out to lunch and the movies with a fairly new hearing partner,
who knows only a little sign language. Cindy realizes that by going to a
restaurant, she will have to either point to the desired item on the menu or
have her partner order for her, which limits her independence. After
difficulties with communicating with her partner throughout lunch, she knows
she will not be able to walk into just any movie theater and receive close
captioning of the script, an issue she has already discussed with her
partner. What does she do? One of two options is available: If both like
foreign films, then a subtitled film would work out nicely, or they could
possibly go to her home and watch a movie rental that she knows is close
captioned, possibly not as exciting as option one, but workable.
Now let's imagine that Gloria, a person using a manual wheelchair, wishes to
take her partner to the symphony and to dinner afterward. First, they must
make sure wheelchair seating is available at their desired theater. They
must then ask questions about wheelchair-accessible rest rooms, so that
Gloria would know whether or not she would be able to access this part of
the building. Then, transportation must be made; since she does not have the
money to purchase a modified wheelchair lift van, she must rely upon others
to get around. Unfortunately, her partner owns a small sports car, and it is
difficult, but not impossible, to get Gloria and her chair into the vehicle.
Once she is lifted into the vehicle, a potentially uncomfortable transfer,
her partner disassembles her chair, placing it in the back seat of the car.
Luckily, Gloria does not use an electric wheelchair, which would not be able
to be taken apart and placed into a regular-sized car. Once they arrive to
the theater, an appropriate handicapped parking place must be located, since
alternative parking would involve the need to access stairs. Before choosing
a restaurant, similar issues would need to be considered including parking,
building access and rest room accommodations.
It can be exhausting for able-bodied persons to consider the amount of
planning involved in the lives of persons with disabilities. In view of the
above discussion, it may seem that spontaneity is completely lacking in the
romantic lives of disabled people. However, this is not true. What is true
is that spontaneity is different; that is, many disabled people plan their
spontaneity. For example, Bob could have arranged to have a friend dress as
a chauffeur and drive him and his partner in to a given restaurant; Cindy
could have already chosen a sexy foreign film and know the theater location
prior to her date; and Gloria could have planned to wear no underwear under
her dress so that when her partner picked her up, not only would a surprise
be apparent, but a break in the monotonous routine would have occurred. The
above are just a few ideas about the ways in which this community lives
their romantic lives and use non-normative means of spicing things up.
The Social Identity Factor
Considering the fact that social standards prescribe notions about sexiness,
it is no surprise that people with disabilities are often confused about
where, or if, they fit into the category of sexual desirability. Individuals
are bombarded with messages from the media, discussing and defining our
ideals of masculinity and femininity. Rarely, if at all, do these images
include persons with disabilities. Thus, disabled persons may have
difficulties constructing not only their gender identity but their sexual
sense of self.
As an example, female wheelchair users may feel as if they are not sexy
because they do not swing their hips as they walk. Because they use a
wheelchair for bipedal ambulation, they cannot subscribe to this standard.
Similarly, some clothing is more disability friendly than others. That is,
for individuals who have limited mobility, loosely fitting clothing is more
easily put on than tight jeans and high-heeled shoes. Thus, persons with
disabilities construct a sense of their own sexual self by discovering parts
of themselves that they and their partners define as feminine or
masculine -- and sexy.
An additional factor that affects how disability status relates to
disability identity is that of the age of onset of the condition. Persons
who grow up with a disability from an early age may experience very
different feelings and beliefs about their disability than those acquiring a
disability later in life. Specifically, disabled persons who have had an
early age of onset of their condition may have grown up feeling asexual, due
to the absence of encouragement in flirtation as children, in addition to
general sexual acknowledgment by others. At early ages, able-bodied children
are groomed by parents and other adults as little adults. For example,
their childhood kissing and hugging behaviors among peers are reinforced and
labeled as flirtation. Adults tend to reinforce this childlike flirtatious
behavior less with disabled children, mostly because people feel to the need
to protect these children from negative responses and mockery from their
peers.
Children with disabilities may have care providers, interpreters or canes
that may factor into limited peer activities due to health-related
circumstances or social isolation. In addition, while depending upon care
providers is a way of life for many people with disabilities, problems
surface due to the lack of privacy available. Since children with
disabilities receive different social reinforcement regarding their
sexuality, when they reach adulthood, a clear sense of their sexuality is
nonexistent. Therefore, as adults with disabilities head towards sexual
relationships, a great deal of confusion may surface. These sources of
distress are oftentimes helped by sharing feelings, thoughts and life
stories with other persons with disabilities. Not only is a sense of I'm
not alone derived from this process, but the exchange of sexual
relationship triumphs and disasters are exchanged between individuals.
Acquiring a disability later in life usually begins a life-long process of
adjustment to a new way of life. Able-bodied persons who have become
disabled have lived a life knowing themselves sexually in a particular
fashion, and within a short period of time must change their sexual
identity. An individual in this situation is often struggling with whether
he or she will fit into new bodies and how sexual expression will be
different. Thus, persons acquiring a disability later in life are dealing
not only with physical adjustments to a new body, but also with a
redefinition of their sexual sense of self. It may be that a person who has
acquired a disability as an adult may fight to maintain his or her
able-bodied sexual sense of self, despite societal beliefs dictating
otherwise. This works for some persons, but other individuals feel a sense
of struggle in trying to combine the old and new way of being. There is no
defined length of time in which a specific transition occurs, and many
express that their struggle with identity-related concerns are an ongoing
life process.
Summary
Persons with varying types of disabilities maintain sexual identities and
express their sexuality often in a manner different from that of able-bodied
individuals. Historically, disabled people have been viewed by academicians
and society in general as asexual due to noticeable physical differences and
potential differences in function. These beliefs have been nourished by
societal definitions of sexual desirability and attractiveness that do not
include persons with disabilities.
Depending upon the nature of a physical disability, sexual functioning is
affected to varying degrees. Disabled persons usually explore their sexual
abilities and desires through trial and error, learning with themselves or a
partner. Since societal support has not been available, it appears as if the
disabled community has been challenged with generating sexual self-esteem
and developing a sexuality identity through experience and support from
others in the community. Overall, it is hoped that through increased
awareness regarding disability status in general, persons with disabilities
will find a more open societal perspective regarding sexuality in the
future.
Dr. Linda R. Mona is a nationally recognized expert,
and well-known advocate, for disability rights. She has authored numerous
presentations and papers on the topic of sexuality and disability, in
particular, and often runs workshops on this very important topic.
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