MALE, FEMALE OR DISABLED: BARRIERS TO EXPRESSION OF SEXUALITY (PART 3) Sunil Deepak, 2002

Part 1 - Part 2 - Part 3

Chapter 6: Desires, Fantasies & Experiences

While the concept of sexuality used for this research is much wider than just sexual intercourse, there is no doubt that sexual desires, fantasies and experiences do form the core of sexuality. Increasing there are publications on sexuality of disabled persons, but mostly they are for professionals, looking at disability and sexuality from the perspective of "problem" and they hardly say anything about sex, love and pleasure. (Hingsburger, 1995)

Sexual Desires and Fantasies

There were three areas of discussion which directly or indirectly touched upon the sphere of sexual desires and fantasies. The first area of discussion was fantasy about a magic wand and how we shall like to use it. Almost all the participants expressed a desire to change the mentality of people, to be more accepting of diversity and of disabled persons. Though some persons did have more personal desires, hardly anyone connected sexual desires with the magic wand.

Manuela: If I had a magic wand, I would like the world to be of more humane and more acceptable of disabled persons, without all those barriers which block our autonomy. I would also like to change the mentality of persons in our regards, that is remove their barriers.

Nadia: I would like to make Marcello to be less aggressive and more tolerant, even if I understand him. He had to fight to be not crushed by others since he is disabled since birth while I became disabled when I was already 18. 

The second area of discussion was about the following statement – “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)

Claudio: As I had told you, I have no experience for talking about this. However, if you have a friend or a researcher who would like to test this hypothesis, I am willing to try.

Max: I certainly agree because disabled persons do have more fantasy. It is natural, as they miss something, so nature makes sure that they become better in some other aspect.

Nadia: It is clear that Tom has discovered something, which exists in our intimate life, especially in the life of disabled women.

While the discussions about sexuality were often about barriers and problems, the above statement from Tom Shakespeare et. al. was greeted with joy by the participants. Though it is more difficult for disabled people to form sexual relationships because of disabling barriers, when they do, any limitations imposed by impairment may paradoxically lead to advantages. (Svein & French, 2000, p. 575) Almost every one felt that this was indeed true, though those persons, who have never had a sexual experience were not so sure about it.

The third area was that of our sexual fantasies. Do the barriers, both external and internal, disable the sexual fantasies of disabled persons? The aim of these questions was to look at the depth of internalisation of barriers among the participants and if the sexual fantasies reflected those same barriers in any way. Only about 50% of participants agreed to talk about their sexual fantasies.

Gaia: I think that fantasies are something intimate and if told, they lose their beauty and “individuality” – they are some thing very personal.

Mari: When I was in love with a tetraplegic man, who could only move his neck and give me pleasure only through his mouth, I used to fantasise that he is forcing me to make love to another man, while he looks on us and our eyes were united… I never spoke to him about this but I think that this was also his fantasy.

Mariangela: I fantasise that I am hugged strongly in the arms of someone – he doesn’t have a face. I don’t know where my body finishes. I can only feel my butt on the chair and part of my back, the rest of my body is not in contact with any thing or any one… I have a fantasy where I think of someone penetrating me. I never think of things which actually happened to me, that would be too painful. I only wish, I could make love once without being hit by someone.

Do words play any role in the erotic sphere? What role does the language play in the sexuality? While almost every one agreed that they use words related to sex and genitals as swear words, only a few men felt that words had an erotic role in their sexuality and sexual fantasies. Erotic telephone lines bring together the erotic power of words, coupled with that of fantasy. They are also easily available from the privacy of the home, the only barrier being the cost. However, only two participants, both men, had ever used the erotic telephone lines though all participants felt that such services should be available for those wish to use them.

Gaia: I don’t get any kind of pleasure from using vulgar language. I don’t mind it if my partner uses it, if I know that it is part of the erotic game and not as a violence.

Carlo: This doesn’t refer to me, as I am deaf.

Max: I did use erotic telephone lines, I thought it was kind of squalid …but I did it in particular moments of excitation. Hunger is just hunger, it does not matter how you satisfy it… ever since I have access to internet, I have never used them.

Pornography can be seen as another way of stimulating fantasy, through images coupled with words or sounds. Almost all participants had seen pornographic magazines. Most of them also felt that pornography was not an issue with them and they had no problems with the fact that is easily available at the news stands in Italy. None of the participants had ever seen pictures of persons with impairments in such magazines. If somebody with a disability turns out to be a sex symbol, there will be other people who say jaysus, if she or he can do it, then I can too. (Doyle, 2000)

Marcello echoed a similar thought and wrote that it would be good idea to have persons with impairments in pornographic magazines since “lot of people read them and it would make them realise that disabled persons also have sexual needs”. However, no other participant seemed to agree with his idea.

Gaia: I think that porno magazines are stupid. I think that they are the best way to kill your desire for sex and to give wrong education to persons. They show sex as some thing mechanical and boring, like doing gymnastics…perhaps men like them more?

Marcello: I think that it is good that now you can buy them without problems. If young men buy them, they can have a direct impact with the other sex, and I don’t think the pictures of beautiful woman are traumatic for any one. However, the problem is different – parents are supposed to give information to their children about sex and they are not doing it, so why complain about pornography?

A fantasy is the navigational path we invent to steer ourselves between the reefs and shoals of anxiety, guilt and inhibition. Fantasies, not only express our most direct desires but also portray the obstacles that must be symbolically overcome to win sexual pleasure. (Friday, 1980, pp. 1-2) The usual embarrassment in talking to others about sex can be partly due to difficulties in putting in words something which has deep roots in our affective being and is made of gestures, images, sensations and touch. (Veglia & Zoccorato, 1999, p. 23)

Sexual Experiences

Masturbation can play an important role in your discovery of a new sexual identity as a person with a disability. It might even be easier than starting with a partner, no matter how recent or long term your disability might be. (Owen, 1997) Self-stimulation is one of those recurrent themes coming up during discussions, more or less accepted in families as well as in institutions. (Mannucci, 1996,p. 28)

Gaia: I have never tried it and the idea of touching and caressing myself seems strange to me. Perhaps I never loved myself enough to try masturbating?

RR: I think that masturbation is one of the forms of sexual expression, if it is accompanied by a complete and happy sexual life. If you use it to substitute the real sexual life then it is an alarm signal.

Mariangela: I think that it some thing inferior – from the experience that I have, I see the relationship with another person as a proper sexual relationship. Masturbation is part of the solitude, it is because you don’t have any thing else. If you masturbate with some one, as a way of being together, then of course, long live masturbation!

Costa:  Adolescence was a bad period for me. For almost four years I was in love with a girl, who never looked at me and I hated the school. My only pleasures were music and masturbation…however, it is the only way you have because you can’t have proper sex. Now when I do masturbate, I don’t feel satisfied. It makes me feel lonely and makes me miss the life as a couple.  

Some people with short or missing limbs, weak muscles or bad coordination may find it impossible to masturbate, and obviously get unbearably frustrated, although most people prefer not to think about such things, and the frustration goes unmentioned and ignored. (Owens, 1997) Though almost all the participants seemed to agree that masturbation was perfectly legitimate and normal, they also see it as some thing negative since it is the only sexual choice available to most of them.

During the research there was a debate in Italian parliament about a law for allowing institutional prostitution. The theme of paid sex workers for disabled persons also comes up frequently in some Italian disability-related newsgroups.

Sometimes the disabled person manages to find a professional sex worker, but I’ve known blind people who are unaware that such services exist because “that kind of thing” isn’t read out on talking newspapers. Deaf people and those with speech difficulties are unable to phone up to make an appointment, and the hurdles for people with mobility problems can be enormous. Most working flats are upstairs, massage parlours inaccessible. The “going rate” is usually beyond most people’s means, and requesting a sex worker to visit you, usually doubles the cost. (Owen, 1997)

Among the research participants also, the theme of paid sex workers created some debate.

Claudio: I have never been to a prostitute though I think that those who wish to go to them should have the possibility.

Mariangela: In 1997, I casually knew a man who was working as a gigolo. He proposed it to me and I agreed after some hesitation. I always wanted to feel the sensations of sex without being raped or hurt by violence. But when the moment came, I just gave him the money that we had agreed without even taking off my coat… I want the luxury of being of a romantic? I don’t know, but I was just incapable of it.

Marcello: My first sex was with a prostitute. My friends collected all the money so I could also try it.

Mari: It is a difficult subject! I have some disabled friends, who regularly go for sex to prostitutes, because otherwise they would have no opportunity for sex. I respect their choice. However, I think that this is not correct because the existence of such services makes it more difficult to build a society with a progressive culture – where sex is not a taboo and where disabled persons are not a taboo.

Most of the participants felt that they would not like to use the services of paid sex workers, though all of them agreed that it is legitimate that those who wish to do so, can have this possibility. Like for masturbation, most participants see paid sexual workers as a denial of their right to “normal” relationships and a symbol of lack of choices available to them.

“Devotees” are persons who like to have sex with persons having impairments. Most of the participants had heard about it through Internet though no one had any experience with such a person. Most of the participants had conflicting ideas about this.

Andrew: I have heard about it recently and I would like to meet such a person but I don’t know how to find her.

Carlo: I don’t want to be seen a category – I don’t think you get love by being a category.

Mari: I have heard and read about devotees. No, I don’t like the idea and I would never wish to be with such a person, who doesn’t see me as a person but looks only at my disability.

Milo: I would love it, do you know how can get in touch with someone like that?

Mariangela: Do I want someone like that? If you know someone, let me know! I am only joking, I don’t think I want a person who wants me only because I am disabled and not because I am Mariangela, though it would be the first time in my life that my disability is actually useful for some thing!

Four participants had had episodes of sexual violence and rape in their past. All four of them still continue to have very strong feelings about the subject.

Mariangela: When I was 17, that Franco raped me and when I was fighting with him, he was saying “enjoy it stupid. This is your only occasion. Look at yourself, who would wish to do it to someone like you…”. I could hear voices from the other room, but I don’t know why I didn’t cry out aloud. For a long time I felt guilty about not shouting and calling for help… No I have yet not overcome it. I don’t feel anger, I just feel compassion for me. 

Sexual desires, fantasies and experiences of disabled persons reflect the disabling barriers, which affect other aspects of their lives. The “problems” relating to sex and relationships for disabled people may be caused more by negative self-image, lack of self-esteem and social pressures than necessarily by physical impairment or loss of function due to disability. (Naude, 2001, p. 25).

Chapter 7: Internet and Emancipatory Research

The research also aimed to study the possible role of emails and internet in emancipatory research process. The discussions on this issue can be grouped in two main areas:

(1) Role of emails in conducting interviews and its advantages/disadvantages compared to other “live” interview techniques

(2) Potential for promoting an emancipatory process through emails/internet

Emails, Newsgroups and Internet as Main Instrument for Conducting Disability Research

Emails for conducting research interviews: The experience of participating in a research through emails was discussed during discussions on thematic reports. Different participants had had participated in surveys and interviews previously and were thus able to compare the two and comment on the differences.

Mariangela: The first difference that I felt was that to an interviewer with a recorder, I would have said the first things that came to my mind. While in this way, I could write down my feelings. This is because the relationship is different. To have the other person in front of me means that I have to expose myself to his judgement… and emails gave me a space for reflection! Some times, it took me days to answer a question. …If you had been here physically, I would have answered you, but through emails, some times I was not writing to you, I was talking to myself. The fact that in your messages, I never had the feeling of being judged and that also helped. When I asked you any thing, I felt that you were answering me sincerely and honestly, and that helped me to be sincere and honest.

RR: The advantage of this kind of interviews compared to the traditional way of doing these is that here you are not required to answer intimate and embarrassing questions without thinking. Probably when you write there are less inhibitions and fear. The disadvantage for the interviewer is that you don’t get the answers immediately but you have to wait for them…

Max: I think that the positive thing about email interviews is that you can answer in sincere and honest way since the interviewer is not in front of you. I can also imagine that for the same reason, some persons can write what they wish and give completely false answers.

Emails & Internet for Emancipatory Research

The term ‘emancipatory disability research’ was coined by Mike Oliver, almost ten years ago. (Oliver 1992, cited by Barnes, 2001) The social model of disability has been an emancipatory concept in the lives of many disabled people. (Tregaskis, 2000, p. 343)

Emancipatory research is about the demystification of the structures and processes which create disability, and the establishment of a workable dialogue between the research community and disabled people. (Barnes, 1992, p. 122)

Apart from the process of the emancipatory research which must involve the researcher and the researched in equal partnership in different phases of the research, which was attempted in this research, it is important to know if it actually helped in “demystification” and in creating a collective consciousness about social model of disability? The answers from the participants were very diverse though some of them commented that the research had helped in looking at the collective needs of disabled persons.

Gaia: I am reading the reports on our answers and it is getting to be very interesting. It is an “experience” in the sense reading what others think and feel, makes in feel very close to them… first I was speaking alone and now I hear voices of others and that is very beautiful. …I have to say that reading what you have written, what we have written, it is such a strange and moving experience that I can’t describe it. Every evening when I download my mail, I am hoping to see another of these reports and then after reading them, I think about them for a long time. When I started participating in this research, I didn’t think that it would be such an involving experience. Reading your words is like looking at myself through a mirror.

Mariangela: I have read the report in the morning and for the whole day, I kept on thinking about it. I am reflecting on things that I had never thought about before. I went some times to the disabled people’s organisation – but it is full of people complaining all the time. I didn’t want to go back there again. I never felt part of a group of “disabled persons”, when people earlier used to say the “world of disabled persons”, I couldn’t understand what they meant. I never thought that by having similar needs we become similar persons… reading this report, it was like a flash of light in my head. Perhaps when the non-disabled persons say “you all”, it is not so strange after all. 

Walter: The reports are becoming very interesting. Reading what we all are saying, I feel a great desire to LIVE! And to shout that WE are also there!

Carlo: I don’t know what to say. I don’t share most of the opinions that have been expressed in this group.

Claudio: I wanted to make some considerations. I think that the criteria of this research by grouping together persons with different disabilities is very generic. I think that persons with sensorial problems (deaf persons, blind persons) have different problems compared to a person having tetraplegia…This has not been touched in this research. 

Matteo: Thanks for the reports. They are interesting but also banal and obvious. Nothing new comes from them. They all seem to say that each of us lives our sexuality in different ways… 

Two primary principles of ‘empowerment’ and ‘reciprocity’ are at the heart of the emancipatory research. (Barnes and Mercer, 2001 B, p. 40) Emancipation requires an understanding of barriers surrounding the disabled persons and it also needs collective action to remove those barriers. What is the best way to remove the barriers surrounding the sexuality of disabled persons?

Andrew: I don’t know. I prefer to look after my problems by myself. I don’t care what others think or do.  

Mariangela: We have to work on tastes and attitudes of people. What influences these most? Probably advertising. A person with a non-harmonic body, paralysed or non-integral, would perhaps never be the “preference” of people. I don’t see any way of escape. You can’t order persons to make love to me, I would never be “desirable”. 

Max: Everyone in the society needs to be informed – sexual education is not there at all. Society thinks that we are like angels, unsexed. Most of all we need to work on other disabled persons.

RR: We have to involve parents and teachers. However, we need to work most with mass-media.

Mari: Unfortunately the way is long and difficult. It is a battle of civilisation that must be fought at many fronts and it must involve all the political and social community. Even doctors have their responsibility and I wish they can be freed from their prejudice that a disabled person is only half-a-person. But doctors are also a product of this culture which supports that view.

As mentioned earlier in this document, some participants did express desire to meet, which was not followed up. If the aim of the emancipatory disability research is to promote a collective transformation among disabled person for a political and social action against oppression, this process could not be completed in this research, also because of time constraints. At the most this research can claim to be a participatory process leading to some understanding of collective oppression of disabled persons in some participants.

However by itself research cannot ever directly lead to empowerment of disabled people. (Barnes & Mercer, 201 B, p. 40) Thus it would make more sense to call it ‘participatory’ rather than ‘emancipatory’ research. Still this research shows that Emails and Internet can be useful instruments for a participatory approach to an understanding of social model of disability and if these are used for an emancipatory process rather than for a time-limited research, these could play a role in empowerment of disabled persons.

Chapter 8: Conclusions

The research aimed to explore the impact of different barriers on the sexuality in a group of disabled persons in Italy. A cross-cutting theme influencing their sexuality came through the discussions with participants, which probably forms the core of the debate about their sexuality, the meaning of being a man or a woman for each of them. All barriers to the sexuality, physical, social, cultural and the ‘barriers of the heart’, all revolve around this core question. Thus, a person's sexuality cannot be separated from his or her social development, beliefs, attitudes, values, self-concept, and self-esteem. (Nichcy, 1992)

Max: In spite of my feeling very confident about me, I am convinced that no one can really stay with me for long time because I am not equal, a proper man and this feeling, I can’t remove from my head.

Stefano: For me to be a man, means to be accepted for what I am, for what I feel, to feel myself accepted, important and reciprocated.

Walter: It is important that the man has the control during the sex, my girl made me understand that. Even if I am paralysed, I was able to make love like a real man… I won’t be a normal father for my child. I wouldn’t be able to take him out on bicycle like other fathers do, but I can explain the value of diversity to him and I would teach him to respect all human beings.

Serena: If I was man, I wouldn’t be a virgin, but after all, I am a woman and so I am still a virgin, perhaps because women have less desire than men? Or because I am afraid to be called a prostitute? I don’t know, perhaps both of these, even if I don’t want to accept it…

Physical barriers surrounding the disabled persons are the first obstacle limiting their opportunities for meeting others and forming affective relationships. Yet, almost all participants agree that the worst barriers are those of attitudes and values in the society. These influence their views defining their identities as a man or a woman. As Frtizon (2001, p. 21) says, At some point everyone has felt insecure in relation to their own sexuality and has asked themselves if they will find a partner and if they will be successful in their sexual life… If you do not find a partner or if your sexual life sometimes causes you frustration, you always wonder if it has anything to do with the disability. Finding partners, ideals of love, children and family are all closely linked to this meaning. 

RR: For me there is a big difference between love and sex. Sex means just giving your body for satisfying an urge or a need, without expressing their feelings. Sex is an end to itself. I am not looking for sex, I am looking a girl with whom I can build a long term relationship. 

Mariangela: I have a disabled friend, who once told me that she wanted to have a baby. I think it is very selfish of hers. It won’t be good for the child to have a disabled mother. 

The barriers to sexuality influence disabled men and women differently. The growing up with a physical disability enforces a view on the young women’s bodies as not ‘up to scratch’. While this applies also to disabled young men, women’s bodies consist of more parts that are subject to subordination and social control than do men’s bodies. (Haug 1987) It has been suggested that persons having an impairment since birth or in childhood face more barriers. (Baldaro, 1987 and Malaguti, 1993) The impact of the barriers created by attitudes of family and community in realisation of sexuality among disabled persons is clearly seen even in this small sample of participants involved in this research as all the persons, who did not have any sexual experience, have an impairment since birth. 

The emergence of information technology is described as the emergence of a new era, denoting a fundamental shift in society from the industrial era. (Michailakis, 2001, p. 478). Through websites, persons can question the popular beliefs about disabled persons and their sexuality, challenge the myths, fight against the stereotypes and create a platform where disabled persons can share their ideas and experiences (Erin, 2000). However, this study indicates that the transformation of online interactions into physical intimacy is often filled with difficulties and frustrations. Solitary masturbation and sexual fantasies may be the only possibilities of any sexual expression for some disabled persons but are seen as frustrating and unsatisfactory since these are not the result of free choice but the only sexual expression available to them. 

Finally the research also shows that emails, newsgroups and internet can be a useful tools for involving disabled persons in a dialogue for a better understanding of the mechanisms of the barriers and to promote long-term collective social and political action. 

Gaia: For me sexuality is a conquest. I was born in a small village in south and I think that in some places, free and knowledgeable sexuality is a conquest for all women, disabled and non-disabled.… at the end, you realise the first prison from which, you need to come out is your own prison – you have to be aware and convinced that you are a person like all others and you have rights, that everyone has rights, both disabled and non-disabled and that life is not easy for any one. You have to fight with society, with family, with teachers but you also have to fight with yourself and like everyone else, if you wish to have your rights, you need to fight for them. You have to be committed, because if you are not convinced of some thing and are not willing to fight for it, in this world nothing falls down from the sky in your lap.

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