Sexuality and Disability

Paper instructions:
You will apply course content in three different creative, analytical papers.    You will use course concepts that we have explored to give meaning to or interpret the content of books, films, articles, news, media images, or any other collection or presentation of knowledge or ideas (i.e. diagnostic criteria; laws, rules, and mandates).  Each paper should be at least 3-4 pages (double spaced, 1 inch margins, 12 pt font, etc.), and must include reference to at least one related scholarly journal article (not assigned) as well as assigned reading.
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0146-1044/00/1200-0283$18.00/0 2000 Human Sciences Press, Inc.
Sexuality and Disability, Vol. 18, No. 4, 2000
Sexuality and Disability: The Missing
Discourse of Pleasure
Mitchell S. Tepper, Ph.D., M.P.H.
1,2
In the realm of sexuality and disability there is public discourse on deviance
and inappropriate behavior, abuse and victimization, asexuality, gender and
orientation with regard to women, and reproductive issues in women and men.
However, there seems to be a missing discourse of pleasure. The purpose of this
talk is to shed some cultural and historical insight into why this may be so, to
argue why sexual pleasure is important to quality of life, to point out a few of
the consequences of not including a discourse of pleasure, to share some of my
research on sexual pleasure in people with spinal cord injury (SCI), and to
make a plea for inclusion of sexual pleasure in the disability studies agenda.
KEY WORDS: sexuality; disability; pleasure; disability studies.
I truly stand on the shoulders of giants. Before I get started I would like to
acknowledge a few people. First, Michelle Fine has influenced my thinking
with regard to the missing discourse of pleasure. Once upon a time, many years
ago, I read an article she wrote called “Sexuality, Schooling, and Adolescent
Females: The Missing Discourse of Desire” (1). In it she argued that the anti-sex rhetoric surrounding sex education and school-based health clinics does
little to enhance the development of sexual responsibility and subjectivity in
adolescents and in fact serves to increase experiences of victimization, teen
pregnancy, and school dropout. She also argued that inclusion of desire in the
sexual discourse serves to empower young females to be sexual agents, entitled
to pleasure and therefore responsible for their own sexuality. Fine details a
discourse of desire as follows:
1
President, The Sexual Health Network.
2
Address correspondence to Mitchell S. Tepper, Ph.D., M.P.H., 3 Mayflower Lane, Shelton, CT
06484; e-mail: mitch sexualhealth.com.
284 Tepper
A genuine discourse of desire would invite adolescents to explore what feels good and
bad, desirable and undesirable, grounded in experiences, needs, and limits. Such a dis-course would release females from a position of receptivity, enable an analysis of the
dialectics of victimization and pleasure, and would pose female adolescents as subjects
of sexuality, initiators as well as negotiators (p. 33)
I have simply extended her thinking to the context of sexuality and disability in
the words to follow.
Next, not second, there is Barbara Faye Waxman. Nearly 10 years ago, in
the pages of the disability rag, she led the battle cry with an article entitled,
“It ’s Time to Publicize Our Sexual Oppression” (2). She asked,  “Why hasn’t
our movement politicized our sexual oppression as we do transportation and
attendant services? ” And was so bold to state her belief that it is  “because we
are afraid that we are ultimately to blame for not getting laid; that it is some-how a personal inferiority. And in the majority culture this secret is a source of
personal embarrassment rather than a source of communal rage against the sex-ual culture itself ” (p. 85). Then there is the voice of Ann Finger who once noted
sexuality as a source of our deepest oppression and our deepest pain. And
lastly, and I know I leave out many like Susan Knight (3), who were also
pioneers in the field of sexuality and disability from our own disability perspec-tive, I ’d like to take take my hat off to Tom Shakespeare, Kath Gillespie-Sells
and Dominic Davies for their groundbreaking book, The Sexual Politics of Dis-ability: Untold Desires (4).
So what I’m here to say is not entirely new or original. Yet I hope my
perspective can add additional insights and serve to keep the momentum going.
My foundation is not in disability studies per se but in business, in public
health, and in human sexuality. I have been a member of the disability commu-nity for almost 18 years and have been formally doing research on sexuality
and disability for the past 10 years. I have developed a curriculum to teach
health professionals how to provide comprehensive sexual health in rehabilita-tion programs (5) and taught that program to hundreds of medical students and
experienced rehab professionals. I also conduct sexuality education workshops
for young people with disabilities ages 14 – 21 and for adults with disabilities.
For the past four years I have been addressing the questions of hundreds of
people with disability or illness via my website sexualhealth.com, with the help
of some volunteers in this room, namely Drs. Russell Shuttleworth and Linda
Mona.
SEXUAL PLEASURE IN A CULTURAL PERSPECTIVE
The pleasurable aspect of sex in our culture has been largely ignored,
vilified, or exploited. Our families, public schools, religious institutions, and
medical establishment have adopted the “don’t ask, don’t tell ” policy of sexual
education. In fact, the United States government has funded, to the tune of $500
The Missing Discourse of Pleasure 285
million, an abstinence-only-until-marriage act that does not allow for classroom
discussion of sex as a vehicle for expression outside of heterosexual marriage.
The dominant cultural institutions have effectively silenced public discourse of
sex as a source of pleasure in our lives.
One institution that has not ignored sexual pleasure is the media. However,
the media has exploited sexual pleasure for gain. Sex is portrayed as a privilege
of the white, heterosexual, young, single and non-disabled. Sexual pleasure is
held out as a reward for buying the right product and targeted to markets with
the most disposable income. Sexuality as a source of pleasure and as an expres-sion of love is not readily recognized for populations that have been tradi-tionally marginalized in society. Sexual portrayals of people who are older, who
are larger, who are darker, who are gayer, who are mentally or physically dis-abled, or who just do not fit the targeted market profile have been conspicu-ously absent in mainstream media.
The discussion of pleasure in populations such as women, older Ameri-cans, large sized people, gay, lesbian, bisexual, and transgendered individuals,
and children is also underrepresented in the medical or scientific research litera-ture. This is equally true for people with disabilities. A biologically determinate
viewpoint of sex as solely the province of reproduction, and reproduction solely
the province of the fittest, usually those with access to the full enjoyment of
citizenship, has largely served to exclude people with disabilities. In addition, a
social cultural viewpoint of sex as a source of danger leads to the presumed
need to protect us. Disabled populations are not viewed as acceptable candi-dates for reproduction or even capable of sex for pleasure. We are viewed as
child-like and in need of protection.
Alex Comfort in Sexual Consequences of Disability (6) summed up the
situation as follows:
Besides the pressures of folklore, individuals whose mobility is limited or whose defor-mity is evident are exposed to other forms of attack upon their sense of worth and
desirability. Cultural constructs, such as a wholly unrealistic emphasis on physical
beauty or strength as an index of being desirable, and the practical barriers of finding a
partner, all combine to make the aim of sexual self-validation seem better given up; the
relief of hospital staff and relatives with this renunciation becomes evident and may
contribute to it, even though they do nothing to remedy the frustration and loss of self-value which may accompany it. (p. 3)
Societal attitudes toward people with disabilities have largely served to quiet
both personal and political discourse on sexual pleasure and disabilities until
most recently.
SEXUAL PLEASURE: A HISTORICAL PERSPECTIVE
We have a tendency to explain American avoidance of frank discussions of
sexuality on our American Puritan Ethic. While it is true we can trace much of
286 Tepper
our sexual phobias to the Puritans, the root of the problem goes back over 2000
years. A review of the history of pleasure in western philosophy, religion, and
science lends insight to the development of modern day sexual mores held by
cultural institutions including family, school, religion, medicine, and law. Sex-ual pleasure has been conceptualized as a lesser good, a sin, a sickness, and a
perversion.
Western thinking and attitudes about sexual pleasure can be traced back to
Greek dualistic thought juxtaposing soul and body. Pleasures of the flesh were
ranked as the lowest of goods based on the superiority of the soul and reason.
Plato relegated sexual desire to the lowest element of the psyche because “cop-ulation lowered a man to the frenzied passions characteristic of beasts” (7, p.
14). The Catholic Church adopted many of the Greek ’s philosophical tenants
about bodily pleasures and, over time, strengthened the negative attitudes and
beliefs about sexual pleasure, promoting sexual pleasure to the status of sin (7).
It is not until the period of the Renaissance and reformation (circa 1500 CE)
when Puritans reared their heads. The Puritans and later the Victorians in the
late 1700s to mid 1800s endowed us with the first system of laws against
“obscene” or objectionable words including any direct reference to sexual mat-ters.
In the late 18th century and early 19th century with the increased popu-larity and reliance on doctors and the medical profession, sexual pleasure was
thought of or viewed as disease or sickness instead of sin, making it now a
medical problem. According to Bullough and Bullough (7), the adoption of the
medical model of sexuality substituted the view that all nonprocreative sexual
activity was a sign of sickness for the earlier conception of sexuality as sin.
Physicians  “conceived their purpose to be a moral one ” (p. 220), emphasizing
the dangers of premarital, extramarital, or unusual sexual activities, not the
pleasures of sex, and thus impaired the understanding of the physiological and
psychological importance of sex in human beings (7). From this point on, the
medical profession including psychiatry has played a central role in defining
what is normal sexual behavior and what is deviant.
With the turn of the century came Freud and the advent of psychoanalytic
theory when deviations from the heterosexual procreative model of sex were
softened to the status of immaturity. Oral sex, anal sex, clitoral orgasms, inver-sion (what we know as homosexuality), lingering at foreplay were all perver-sions (8). Feelings of loathing, shame, fear and pain, as well as moral and
aesthetic demands, were supposed to keep us on the path toward the definite
and  “excepted normal limits” or sexual aim of heterosexual intercourse.
It was not until the mid 20th-century with the groundbreaking research of
Alfred Kinsey (9,10) and Masters and Johnson (11) that sex and sexual pleasure
began to be demystified and normalized as a natural part of life in the United
States and worthy of scientific attention. With the increased attention on sexual
The Missing Discourse of Pleasure 287
pleasure came a heavy focus on sexual performance and orgasm as the goal of
healthy sexual expression. Deviations from  “normal ” sexual response culminat-ing in orgasm as described by Masters and Johnson (11) were viewed as human
sexual inadequacies (12) and began to attract much interest. Human sexual
inadequacies in nondisabled populations became the focus of sex therapy.
While serving to liberate us from restrictive notions of sexuality, the new sex
research with the help of distortions from the media that exploit people ’s sexual
insecurities, has created an orgasm imperative in our culture (13). If someone
who is not disabled does not desire sex, they have hypoactive or inhibited
sexual desire disorder. If a nondisabled person does not have an orgasm, they
have orgasmic disorder and qualify for treatment.
However, if a person with a disability has low sexual desire or does not
experience orgasm, this is not seen as problematic. Neglect of the pleasurable
aspect in the discourse of sexuality and disability is perpetuated by the assump-tion that people with disabilities are child-like and asexual (14), a focus on
procreative sex to the detriment of pleasure (15), and the assumption that peo-ple with disabilities are not physiologically capable of pleasure or orgasm. To
this day, in DSM IV (16), both female and male orgasmic disorder must be
distinguished from a  “Sexual Dysfunction Due to a General Medical Condition ”
(p. 515) when the dysfunction is judged to be due exclusively to the physiologi-cal effects of a specified general medical condition. “Spinal cord lesion ” (p.
506) is used as the example of such a condition in women. This is evidence that
normal science (17) still operates under a paradigm that views orgasmic disor-der in people with at least some disabilities as a given.
Fortunately, social political movements by other sexually disenfranchised
groups are gaining power and have brought into public discourse the discussion
of sexuality and pleasure among their constituencies, opening doors to research
and writing that address sexual pleasure. Women have found a voice for them-selves through the feminist literature and women like Drs. Beverly Whipple and
Gina Ogden educating other women (18) and telling their stories (19). Gay,
lesbian, bisexual, and transgendered activists continue to make strides in chal-lenging the straight community and have won representation and inclusion in
popular movies and prime-time sitcoms through pressure on Hollywood. Older
Americans have found their sexual voice spurred on by Bob Dole and Pfizer’s
promotion of Viagra, along with recent research on sex and maturity sponsored
by AARP (20).  “Fat” people are speaking out as evidenced in a new book by
Hanne Blank called Big Big Love (21). However, with the exception of works
of a few brave heroines in the disability movement, some noted earlier, and
until the publication of  Sexual Politics of Disability: Untold Desires (4), sexual
pleasure in people with disabilities has remained remarkably silent in the dis-ability advocacy and the disabilities studies agenda. People with disabilities are
just joining the fray.
288 Tepper
WHY DO I THINK SEXUAL PLEASURE IS SO IMPORTANT?
Pleasure is an affirmation of life. Pleasure is often defined as an addition
to life or a form of luxury rather than a centrally motivating and defining fea-ture of social action (22). Virginia Johnson (23), speaking to the significance of
sexual pleasure, refers to pleasure as  “the authentic, abiding satisfaction that
makes us feel like complete human beings” (p. 28). Pleasure adds meaning to
our lives. Sexual pleasure is particularly powerful in making one feel alive. It is
an anecdote to pain, both physical and emotional. In fact, the analgesic effect of
sexual pleasure has actually been measured in laboratory studies (15,24). Sex-ual pleasure can enhance an intimate relationship. It can add a sense of connect-nedness to the world or to each other. It can heal a sense of emotional isolation
so many of us feel even though we are socially integrated. It can help build our
immunity against media messages that can make us feel as if we don ’t deserve
pleasure.
CONSEQUENCES OF IGNORING PLEASURE
When we do not include a discourse of pleasure we perpetuate our asexual
and victimization status. We do nothing to alleviate what I see as endemic low
sexual self-esteem among the many people with disabilities and illness who
participate in my research or who come to me for help. Negative sexual mes-sages about people with disabilities fuel negative attitudes and misguided be-liefs about sexual potential and take their toll on sexual self-esteem. Low sexual
self-esteem combined with the likes of physical limitations, diminished sensa-tion, lack of escalating arousal, difficulty with ejaculation, or difficulty with
orgasm may make sex and sexual relationships seem pointless, may reaffirm
unexpressed beliefs of asexuality, and may lead to the conclusion  “why bother. ”
In my dissertation research I explored knowledge, attitudes, beliefs, and
cognitive processes that impede or facilitate sexual pleasure in people with
SCT. After injury things were “not the same.” There were concerns about being
sexual in the  “normal ” way. Feelings of  “not the same” were rooted in who,
what, where, and how participants learned about sexuality in the larger sexual
culture. These changes experienced in comparison to memories of what was
normal for them before injury resulted in intrusive and uncontrollable thoughts
during sexual activity. The absence of quality sexuality education combined
with learning about sex primarily from having genital intercourse, led to sexu-ality embodied in the genitals and cognitively focused on perfect performance
with the goal of orgasm. This genitally focused and performance oriented con-ception of sexuality presented developmental challenges to optimizing sexual
potential after injury for all participants. Learning about sex from having sex
The Missing Discourse of Pleasure 289
and from media that exploits the pleasurable aspects of sex and not learning
about other aspects of sex from family, schools, clergy, or doctors resulted in
consequences like low sexual self-esteem and lost hope that surfaced when
genital sensations and function were  “not the same” or impaired along with
other bodily functions subsequent to SCI. Participants who relearned how to
experience pleasure and even orgasm after SCI believed early on that there was
more possible and that their sexuality was their responsibility. They learned
more about their spinal cord injured bodies, introduced fantasy; embraced the
disability and rejected sexist and ablest ideals, and were fortunate enough to
experience sex with a significant sexual partner. The deliberate inclusion of
pleasure in this research brought to light the most compelling issues around
sexuality and disability for the participants.
THE REAL ACCESSIBILITY ISSUE
In the words of Benjamin Seaman, a visitor to sexualhealth.com, access to
pleasure is  “the real accessibility issue. ” What are we doing it all for? Full
inclusion means access to pleasure. It means a reasonable chance for relation-ships. The blame cannot all be placed on society. We as a group must push
forward this agenda, educate ourselves, and share what we know to be real
truths about sexuality with the non-disabled community that is equally crippled
by distortions of sexuality in the media. We must be advocates for the inclusion
of sexual pleasure in disability studies, politics, and public discourse.
ACKNOWLEDGMENTS
This study was funded by the National Institutes of Health Predoctoral
Fellowship Award for Students with Disabilities.
This paper is based on my doctoral dissertation research conducted at the
University of Pennsylvania Graduate School of Education Program in Human
Sexuality Education, Philadelphia, PA.
REFERENCES
1.  Fine M: Sexuality, schooling, and adolescent females: the missing discourse of desire. Harvard
Educational Review 58(1): 29– 53, 1988.
2. Waxman BF: It ’s Time to Politicize Our Sexual Repression, The Ragged Edge: The Disability
Experience from the Pages of the first Fifteen Years of The Disability Rag. Edited by Shaw B.
Louisville, The Advocado Press, 1991, pp. 82 – 87.
3. Bullard DG, Knight SE: Sexuality and Physical Disability: Personal Perspectives. St. Louis,
C. V. Mosby Company, 1981, pp. 318.
290 Tepper
4. Shakespeare T, Gillespie-Sells K, Davies D: The Sexual Politics of Disability: Untold Desires.
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