Sex and Disabilities: History and Practices
Sexuality & Disability - History & Practiceby Dr. Linda R. Mona
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.
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.