MALE, FEMALE OR DISABLED: BARRIERS TO EXPRESSION OF SEXUALITY (PART 1) Sunil Deepak, 2002

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SUMMARY

This research is rooted in social model of disability and emancipatory research paradigm, and it explores barriers to the expression of sexuality in a small group of disabled persons in Italy. It has been carried out exclusively through Emails, Newsgroups and Internet, and it also explores the role of internet-based information technologies in participatory and emancipatory research.

For this research “sexuality” is considered in its broadest sense, covering the full range of affective and family relationships and not just limited to sexual fantasies and experiences. Twenty one (21) volunteers were identified for this research through Italian disability-related Newsgroups and Internet. The research was conducted through emails. The participants were involved in all phases of the research.

The participants first helped in defining the areas for and there was an initial phase of individual discussions on the broad areas related to sexuality. From all the individual communications the author prepared extensive thematic reports in Italian, which were discussed with the participants through collective emails. On the basis of collective discussions, a final report was prepared, first shared with participants and then sent to another fifty six (56) persons including disabled persons, parents and professionals, for their comments.

The research highlighted the following findings:

  • Professionals, families and mass-media continue to ignore the obstacles to sexual needs of disabled persons, which tend to be seen in terms of medical model of disability. They also participate in creating disabling barriers around persons with impairments, which have a negative impact on all aspects of their lives. The same negative attitudes and experiences are internalised by disabled persons.
  • As far as expression of sexuality is considered, the participants felt that the “barriers of the heart”, attitudinal and social barriers, are more difficult to overcome. Personal beliefs regarding the significance of being a man or a woman, coupled with images of their own bodies, have particularly significant impact on expectations regarding fulfilment of the sexuality.
  • Mass-media plays a especially important role in influencing the attitudes of families and societies towards disabled persons, often reinforcing stereotypes and negative barriers. It also has a critical influence on shaping attitudes, expectations and ideals regarding attractiveness, desirability, love, family life and sex, of the whole society.
  • Communication through Emails and related instruments gives an opportunity to disabled persons to break the walls of their isolation and redefine their own identities through online text-based exchange of ideas. Yet, their impact on realisation of sexuality remains limited as the transformation of online contact into “real” contact needs to negotiate the same barriers surrounding disabled persons.
  • Finally, Emails, Newsgroups and Internet can be useful tools for participatory and emancipatory disability research, allowing active participation of disabled persons in different research activities, guiding and controlling these. Yet these may still exclude disabled persons like those who have difficulties with text-based communications. Their role in promoting an empowerment process also remains an issue, difficult to assess properly through this short-term research process.

Chapter 1: Introduction

Female, male or disabled? That is a peculiar question, isn’t it? It seems almost to be a confusion of paradigms, doesn’t it? Disability is not a gender. It is a question of person’s abilities, nothing else. Of course people with disabilities are men and women like everybody else. But maybe the question was not about people’s gender or abilities, but categories of public restrooms? (Fritzon, 2001, p. 20)

Sexuality is an essential component of human identity. A vast number of disabled people never experience sex in their lifetime. This obviously produces mental anguish having the same desires and needs as everyone else. (Owens, 1997) If the human desire to be loved for what you are and not for what you should or could be, is universal, there is no doubt that such a desire assumes even bigger significance for a disabled person, in the sense that your own companion needs to accept you with your physical and psychological limits. (Portelli, 1993, p. 187)

Getting laid confirms your masculinity or femininity, but for disabled people it may also confirm your adulthood, especially when you need to have everything done for you, need to wear a bib at meal times, and help with toileting. (Owens, 1997)

Sexuality is a taboo subject, to be hidden behind closed doors and not to be discussed in public. Disability is also a taboo subject, often seen as some thing to be ashamed of and to be hidden behind closed doors. The two taboos come together to negate the sexuality of disabled persons. The two realities, that of sexual-affective sphere and that of disability have been only recently liberated from the weight of numerous taboos. You can now speak about sexuality and you can also speak about disability but if you try to bring together the two subjects as a common reality, suddenly you find the same old taboos rising up. The two terms are seen in antithesis to each to each other, negating each other. (Malaguti, 1993, p. 1)

Sex! The word connotes pleasant thoughts such as love making, fun and warmth. Disability! The word conveys the concepts of loneliness, ugliness, incapacity and pain. Sex and disability! The emotional reaction to these two terms together might include such ideas as impossible, frustrated, withdrawn, vulnerable. (Cole & Cole, 1991, p. 79)

The coming together of disabled persons and their collective fight for equality and human rights over the last few decades have led to international recognition about these rights. States should promote the full participation of persons with disabilities in family life. They should promote their right to personal integrity and ensure that laws do not discriminate against persons with disabilities with respect to sexual relationships, marriage and parenthood. Persons with disabilities must not be denied the opportunity to experience their sexuality, have sexual relationships and experience parenthood. (UN, 1994, Rule 9, p. 28) However, in spite of this formal recognition of sexuality as a part of human rights, there is an enormous gap between what is advocated by international declarations and the reality faced by disabled persons in their daily life.

Attempts to raise this issue or to promote any debate about it may meet sudden resistance. The tendency is to emphasize repressing interventions, aimed at limiting the sexual impulses rather than interventions which educate disabled persons, and help them in acquiring living skills and in expression of their sexuality. (Veglia & Zoccorato, 1999, p. 21) Families may negate the idea of sexuality of their disabled children or even condemn any attempt to discuss the issue.

If parents of boys may tolerate the genital dimension of their sexuality (masturbation, going to the prostitutes, etc.), the parents of the girls never accept this. For both groups of parents, it may be even more difficult to accept the affective dimension of sexuality as this brings up the issue of a third person, an outsider, who is becoming significant in their child’s life. (Landi, 1996, p. 14)

Most of the research carried out about this subject looks at it through the medical model paradigm, so that denied or suppressed sexuality is seen as an inevitable part of impairment, something pathological to be treated, cured and controlled.

In our experience, most of requests for consultation related to sexuality related problems of disabled persons are, in reality motivated by a necessity of suppressing or controlling dysfunctional behaviour rather than by any desire to open any new sexual or affective prospects for them. (Veglia & Zoccorato, 1999, p. 21)

Aims & objectives of the Research

This research is rooted in social model of disability and in emancipatory research paradigm. It explores the impact of society in negating the sexuality in a small group of disabled persons in Italy and has two main aims – understanding the barriers to sexuality of disabled persons and the role of internet related technology in participatory & emancipatory disability research. Regarding the first aim, the barriers to sexuality, the research looks at the following broad areas.

  • In what ways, societies create barriers around persons with impairments, disabling them and more specifically, disabling the expression of their sexuality?
  • In what ways, the barriers created by societies are internalised by disabled persons, reinforcing those barriers?
  • In which ways, these barriers affect the sexual desires, fantasies and experiences of disabled persons?
  • How can the barriers be overcome and does development of internet related technology help in breaking of these barriers.

For this research “sexuality” is considered in its broadest sense, covering the full range of affective and family relationships and not just limited to sexual desires and experiences. Often sexuality is identified with “genitality”, thus diminishing its complete significance. Part of the merit for enlarging the concept of sexuality beyond simple genitality must go to Sigmund Freud. (Mannucci, 1996, p. 25).

In fact, we can’t limit ourselves by defining sex as a coital activity followed by orgasm, because then we risk excluding a large number of persons from this discourse and excluding ourselves from a broad and gratifying vision of sexual pleasure.… Through sexuality we can know ourselves and others in such a rich and profound way, which may not be expressed sufficiently through language and logic. (Veglia & Zoccorato, 1999, pp. 24-25)

The issues for the research: The Italian National Institute of Statistics (ISTAT) provides the following information about persons with impairments in Italy:

In 1994, it was found that in Italy there were 2 million and 677 thousand persons with impairments which means about 5% of the 6 years or older population… There are 2 million and 363 thousand families having at least one person with impairment (about 20% of all families). Among these about 2 million are families where the person with impairment is an elderly person. .… It is more common to find that persons with impairments live either alone or as a child-less couple or they may live as an “additional member”, which means that they don’t constitute their own nuclear family group of a couple or with parents, but live with family of someone else. 23.4% of persons with impairments live alone compared to 7.1% of persons without impairments… comparing at different age groups, we find that a lesser proportion of persons with impairments live as a couple or have children. (ISTAT, 2002)

Why there are less “persons with impairments living as a couple or have children”? Most of the “scientific research” based on medical model or personal tragedy model, looks at the issue by focusing on the difficulties created by impairments, which render affective and intimate relationships impossible, if not outright undesirable. Statistics alone are not sufficient to explain the real dimension of the problems. For example the data regarding persons “living as a couple” excludes persons having less than 21 years, while there is a large number of adolescents and young adults with impairments, whose awakening sexuality is frustrated by the barriers and negation surrounding them.

This research deliberately ignores discussions about impairments and focuses only on the disabling barriers with a general direction for enquiry rooted in social model of disability in context of human rights.

The research was conducted entirely through emails without any other direct contact between the participants and the author. Initially all discussions were individual followed by collective communications to the whole group to share the initial findings and to discuss their significance. The second aim of the research, exploring the potential of Internet related technologies in participatory & emancipatory disability research, was not discussed with the participating persons initially but was raised by the author in the final phase of the collective dialogue.

Selection of research subject: The suggestion for focusing the research on sexuality came from a friend who had lost an arm in an accident in Africa ten years ago and commented on the negative impact of this on her identity as a woman and on her non-existent sexual life. At the same time, the author has been involved in studying the process of empowerment among rural poor and marginalized population groups in developing countries and wanted to explore the potential of using information technology instruments in such processes. This research brought together these two ideas.

Chapter 2: Literature Review

Sexuality is a complex issues touching on almost every aspect of life. This literature review briefly touches some of these issues to illustrate this complexity.

Sexuality, Human Identity and Models of Disability

The notions of sexuality touch the deepest parts of our being and are fundamental to the definition of human identities. Our sexuality is very personal and intimate. As biological beings, everything that is connected with the way we multiply, touches to ourselves and our way of understanding ourselves. (Fritzon, 2001, p. 20). The social identity, the way others perceive our identity, also influences sexuality, and this is particularly important for disabled persons collectively.

The importance of identity is that reality is constructed around our understanding or belief of the nature of the other person or a group of people… Only the characteristics that fit with the identity type are identified and the type is maintained. As such identity types are relatively stable and assume the status of social reality. (Taylor, 1999, p. 377)

For the medical model of disability, the impairments are the basic cause of all the problems and the persons with impairments need to be “rehabilitated” to lessen the impact of their limitations and help them to live “normally”. Professionals tend to define independence in terms of self-care activities. So, independence is measured against skills in relation to performance of these activities. Disabled people however, define independence as an ability to be in control of and make decisions about one’s life. (Reindal, 1999, p. 353)

Physicians are trained to understand pathology and physiology, but not necessarily contemporary sexual attitudes and behaviours. Moreover, the sexual information they do possess may be result of personal preferences and feelings as much as scientific knowledge. (Cole & Cole, 1991, p. 79)

Often even sociological research tends to concentrate on impact of the impairments on sexuality, based on basic medical or psycho-analytical paradigms.

It is evident that scientific literature is looking at this subject mainly through a medical-psycho-analytical viewpoint. Little space is given to a psycho-social approach. (Malaguti, 1993, p. 64)

The social model of disability has challenged the basic assumptions underlying the personal tragedy view of disability. The social model of disability is a result of disabled persons coming together and sharing their experiences, coming to an understanding about the oppressing mechanisms of majority non-disabled society.

The solidarity broke the isolation in which disabled persons and their families had been imprisoned, creating the opportunities for deeper interpersonal relationships, like friendship and love between disabled persons. It was all putting in to discussion the old prejudices: the “shame” of disabled child, her impossibility of feeling any sentiment for any one outside the family. The desire of “being together”, which animated the new associations, was the first real rebellion to the existing system. We were reclaiming our right to be a person. (Portelli, 1993, p. 46)

Starting from late eighties, mostly disabled, researchers begun to draw on disabled people's experiences to illustrate the complexity of the process of disablement with reference to environmental and social forces. (Barnes, 2001) In the context of social oppression of disabled persons, it is suggested that disability research should be used for political action against the ‘disablist society’ (Bury, 1996)

Religion, Social & Family Attitudes

Majority of population in Italy is catholic. The traditional view in Catholic church views heterosexual family as the basic fundament of society and post-marital sex as means for reproduction. Masturbation and homosexual relationships are both seen as un-natural and immoral.

“A gonorrhoea is hundred times better than the vileness of masturbation, better to share the shame in two persons of different sex than to have the same shame growing and accepted in your own body.” (Wanroij, 1990, cited in Mannucci, 1996, p. 23)

The Bible touches upon different themes linked with sexuality, among which is homosexuality, which has always been condemned by catholic church as a sin “against nature”. (Mannucci, 1996, p. 23) Celibacy and chastity as self-denial and control of senses in the path to reach the God, are themes shared by many other religions as well. For disabled persons especially for disabled women, celibacy may be proposed as a virtue to be cultivated.

…it was easier to close an eye about the “physiological needs” of men. Thus the appeals for chastity and virginity for men were pure rhetoric, it was certainly not so for girls and women. (Wanroij, 1990, cited in Mannucci, 1996, p. 24)

Naudé John (2001, pp. 25-26) discusses the different myths related to sexuality of disabled persons – all disabled people are asexual, i.e., incapable of having sexual relationships; disabled people are obsessed with sex and have uncontrollable urges; disabled people are childlike and need to be protected from being hurt or let down; there must be something wrong with a non-disabled person who has a relationship with a disabled person; for the disabled person, it is better to a relationship with a non-disabled person than with another disabled person; etc. Different societies share many of these myths and as can be easily understood, these have a strong negative impact on sexuality of disabled persons living in these societies.

Common myths of people with disability portray us as inferior to non-disabled people, sexual, childlike, weak, passive, not good partners or parents, in need of sterilisation. (Kern, 2001, p. 28)

Family represents the first and the most important contact with the outside world for a child. Thus it is easy to understand the importance of the family attitudes in determining the development of persons and of their sexual identities. Parents and family are the channels through which religious ideas, social ideas and messages from the outside world will pass to the children, be filtered or commented upon.

As disabled children grow up they become aware of their sexuality in the same way non-disabled children do, i.e., through television, cinema, gossip, magazines, etc. But their social activity is more closely supervised than that of non-disabled children and sexual expression of behaviour is often discouraged. (Naudé, 2001, p. 25)

Parents’ concern for safety makes a child-like and regulated existence beyond the years of childhood (Hendey & Pascall, 1998, p. 424), where sexuality may have no role. Family attitudes about gay and lesbian children, may be even more problematic.

“If he is gay, I don’t know, I would try to save him, to get him cured. I know that my son runs this risk. As he can’t control his mind, if he will go with thieves, he would also become a thief. If he goes with gays…” “Our daughter? Lesbian? We can never tolerate that” – both husband and wife are horrified. If it was a man who becomes homosexual, perhaps it would be easier to accept it. Why? – He: I don’t know…perhaps because lesbians are never seen and we are not used to the idea. –She: I would wring her neck.” (Mannucci, 1996, p. 29)

Family attitudes also differ for disabled girls and disabled boys, where girls may have less opportunities for social interaction.

However, in qualitative terms, there were differences between young men and women in the way they described the effect of violence and fear on their lives, with young women expressing much more damage and limitation as a result of violence and fear than young men…For some women fear had a very limiting effect, producing poor social lives for a majority of women and social isolation for some. Two male respondents admitted poor social lives, but most were socially active, with a wider circle of friends. (Hendey & Pascall, 1998, p. 419-420)

Role of Mass Media

The social model of disability has been important in understanding the systematic oppression of disabled persons by non-disabled majority society and its institutions. While physical barriers including isolating institutions limit the opportunities for meeting others and initiating meaningful relationships, the continuing negative messages from mass-media are much more insidious and their impact is probably much more stronger than any physical barrier. We’re all bombarded from TV and magazines with this so-called perfect body. (Doyle, 2000)

These negative messages can have a major impact on a disabled persons’ sexuality, and expression. This is because most people view themselves in relation to what other people think, and this view is very important in determining whether we feel positive or negative about our sexual identity and expression. So the messages received about being disabled can have enormous repercussions on how disabled people see themselves. (Naudé, 2001, p. 23)

Popular attitudes often reinforced by mass-media, about marriage and children of disabled persons can also influence the possibilities of social interaction and the choices made by disabled persons and the expression of their sexuality. Thus while the mass media may depict the children of disabled parents as victims, their lives may be surrounded by the same barriers.

..the location of these oppressions did not lie in the parent’s biology, nor in their failure to provide their children with ‘ideal’ lives, or a ‘normal’ family. Instead the source of oppression for these children usually lay outside the family, in the economy, the state and civil society. (Blackford, 1999, p. 679)

Care, Power and Choices in the Relationships

The need for care can raise additional barriers to expression of sexuality among disabled persons. For some persons the question of body ownership can restrict their views of themselves as sexual beings. With continuous help in dressing, undressing, washing and the management of continence, disabled people can begin to switch off from their bodies. As things are done to them and not with them, the bottom half of the body becomes a separate entity, not owned by the individual but by everyone else who comes to dress and change. (Naudé, 2001, p. 24) When persons are not self-sufficient and personal assistants are needed, the right to live one’s sexuality could raise additional issues.

Changing batteries is one thing. Putting on a condom is something else. "The lines already exist,'' says Letch. "some attendants do toileting, some do not. We're trying to develop a care model which clearly defines what attendants can do and what they can't"… Attendants are not sex workers, nor will they be expected to be. The dilemma is how to give disabled people the sexual freedom to which they're entitled, without compromising the sensitivities and professionalism of those who work with them. (Mascall, 2001)

Relationships also raise issues of power and choices, where disabled persons may have unequal power and choices.

A person who considers starting a relationship with someone with a disability may wonder what that disability will mean to their everyday life. That disability will in fact also be his or her partner’s disability and that creates an inequality between the partners. Because the partner without the disability can choose to live without disability by ending the relationship. (Fritzon, 2001, p. 22)

Relationships also mean coming to terms with feelings of both partners about the impairments of each other, about the limits that this may produce to their living together.

I wince every time my partner tells me of his discomfort -

his discomfort about my lack of "social acceptability".

Which he knows he is seeing. Possibly no-one else…

I tell him I understand. And I do.

Completely. For don't I feel embarrassed about my disability at times?

Dear God, don't I want to "crawl under the bedclothes"

when my body jerks at inopportune moments?

However, I still hurt. I hurt when he voices these things.

(Marks, 2001A)

Changing Context & New Technologies

The development of social model of disability coincided with an era of increasing openness about sexuality. A study about sexuality among disabled persons states: “Because disabled people were not able to make love in a straight forward manner, or in a conventional position, they were impelled to experiment and enjoyed a more interesting sexual life as a result.” (Shakespeare, Gillespie-Sells, Davies,1996) The changing social norms also mean that at least some persons can articulate and express their feelings, desires and anger about the denied sexuality, much more openly.

And then there are the 'freak show' types. Their motives range from mild curiosity to fully blown fetishism. It's great to hear, at the peak of an orgasm, "I've never fucked a woman in a wheelchair before." Why do I continue to put myself through this kind of abuse and humiliation? I often ask myself that very same question. But I've always been fascinated by human sexuality. And I'm a disability rights activist, whether I like it or not. So why not campaign on sexuality and disability discrimination. (Fay, 2001)

There is an on-going debate about providing “paid sexual services” for disabled persons in some countries, though some disabled activists have argued that such a solution is a part of the oppression and ignores the real issues. “Supplying sex” as a state benefit may not be the answer. As well as attracting tricksters, it would take the element of choice from the disabled person, accentuating their childlike status. (Owens, 1997)

Today, several Melbourne brothels employ sex workers who specialise in disability, some having rooms tailor-made for mobility-impaired clients. The only barrier is the price. At more than $100 a time, brothel sex doesn't come cheap. And it doesn’t work for women. (Mascall, 2001)

The advances in information technology can provide new opportunities for disabled persons for social interaction and sexual expression, but not every one agrees with this idea. Many persons, enthusiastic about opportunities for meeting other potential sex partners through Chat groups and Internet, soon become disillusioned with virtual nature of the contacts. Others see internet and virtual reality as an excuse for running away from “real” life.

It's just that if I could have immersed myself in solely scholastic pursuits like the educative stuff on the Internet, or in chat-rooms and virtual sex, I may not have "kicked myself out the door" (I used to do this literally, in my mind) to find my own life, my own friends, when I realized that my cousins were growing up, getting married, having babies. It would have been so easy, too easy to take the "soft" option. (Marks, 2001 B)

However there are also other new technologies. Coupled with increasing openness about sexual matters, these can offer new opportunities for sexual fulfilment. For example, some disabled activists have raised the issue of access of disabled persons to products of sex-industry.

Lanyon combines his job as a recreation lecturer at Victoria University with the design and development of dildos, vibrators and other sex toys specifically for disabled people. Working with a manufacturer, he’s in the process of adding a giant dial to the end of a vibrator, to make it easier to switch on and off. He has designed a “lexi-please” that bends in many ways to cater for the mobility restrictions of some users. ( Mascall,2001)

The above exposition of literature review provides a glimpse of some of the different issues involved in any comprehensive discussion about sexuality of disabled persons and their complex inter-relationship with each other, ranging from religious, social and family attitudes creating barriers with the active participation of mass media and the emergence of organisations of disabled persons, increasing openness about sexual issues and the development of information technologies.

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