MALE, FEMALE OR DISABLED: BARRIERS TO EXPRESSION OF SEXUALITY (PART 2) Sunil Deepak, 2002

Part 1 - Part 2 - Part 3

Chapter 3: Research Methodology

The research is rooted in social model of disability, which means that it did not enter in discussions about possible or perceived impact of impairments on the sexuality of research subjects, while sexuality is considered in its broadest sense. Sexuality is, in fact, very much a social phenomenon (Way, 1982), in that all of us are social creatures who seek and enjoy "friendship, warmth, approval, affection, and social outlets" (Edwards & Elkins, 1988, p. 7).

The research is rooted in emancipatory research paradigm and the participants were involved in all phases of the study, including the identification of the research areas, understanding the significance of research results and decisions about use of these results.

Sample selection and size: As explained earlier, according to data from ISTAT there are about 2.6 million persons with impairments in Italy. Getting a representative sample from such a large group would have been difficult. At the same time, the research plan included a time-consuming on-going dialogue with the participants. Thus it was decided to limit the research sample size to about 20 persons, possibly belonging to different age groups, different geographical areas in the country, different sexual orientation and both, men and women.

An announcement (appendix 1) was placed in some disability related newsgroups to ask for volunteers for the study. There were two main prerequisites for participation – persons should be above 18 years and be a disabled person or a companion/spouse of a disabled person. Persons responding to this announcement were sent more detailed information about the objectives and methodology of the study and were asked to provide some general information and to comment on sexuality as a human rights issue (appendix 2). During this phase of the research the main issues for discussion were defined in collaboration with the participants and then over a period of four months, these issues were discussed with the participants through individual emails.

The main areas explored during the research included: role of physical, attitudinal social and internal barriers, influence of family, influence of mass media, sexual experiences and fantasies. All the communications were framed in an open way, letting each participant to define the direction of enquiry, he/she wished to pursue.

After completing all individual communications, all the messages received from the participants were analysed and sixteen thematic reports in Italian were prepared by the author. Participants were asked if they wanted to be part of a collective discussion about these thematic reports (preferred by 86%) or if they preferred to continue with individual communications (preferred by 14%). At the same time, participants were asked their comments about methodology of research and the differences between email research compared to more traditional approaches of interviewing. Following the comments from the participants on the thematic reports, a final 10 pages long summary report in Italian was prepared and shared first with the participants and then with external persons. The whole process lasted about nine months.

Information About the Research Participants

After the first announcement, a total of 34 persons expressed interest in the study, out of which, 25 persons accepted to be part of the study. Another 4 persons out of those 25 stopped writing back after providing general information about themselves.

Remaining 21 persons completed the study. In addition, one non-disabled spouse of one of the participants, participated in some communications. 15 (71%) participants were male and 6 (29%) female. The lesser participation of women in this research was discussed with participants and the possible reasons proposed by them included – less women had access to Emails; women have more difficulties in talking with strangers about sexuality.

An analysis of communications on the sexuality forum of a popular Italian disability-related website (www.disabili.com) showed that over the last six months there were 42 communications from men and only 6 were from women, which confirms that less disabled women participate in such communications but does not offer any insight about the reasons for this.

The age group distribution of the participants was as follows:

  • 18 – 27 Years: 3 persons (14%)
  • 28 – 37 Years: 11 persons (53%)
  • 38 – 47 Years: 5 persons (24%)
  • More than 48 Years: 2 persons (9%)

Only one participant declared himself to be gay. The participants had different impairments though majority of them were wheel-chair users (14 persons, 67%). They came from different educational and urban/rural and small city/big city backgrounds. Appendix 3 provides general details of participants.

Among the participants, 13 (62%) had had at least one sexual experience with a partner. Eight participants (38%) had never had any sexual experience with a partner and all of them had an impairment since birth. It has been suggested that persons having an impairment since birth or in childhood face more barriers. (Baldaro, 1987 and Malaguti, 1993) Only 6 (29%) persons were married or had a stable partner at the time of the research.

The final ten-page summary report in Italian was requested by 56 persons/organizations, some of whom wrote back to share their own experiences and to offer comments on the report. These include disabled persons, parents of disabled persons, professionals and students. Two disability-related Italian web sites have put up an article related to the summary report. An enquiry about the report was received from a committee on “Equalisation of opportunities for disabled persons” of Italian Ministry of Social Welfare. Parts of the summary report are also going to be published in a magazine (Acca Parlante) published by Disability information Centre of Bologna.

Potential Biases and Considerations about the Discussion Process

Everybody holds certain assumptions and biases depending on their own experiences, upbringing, and training. Interviewers are no exception, and have to try deliberately to minimise the weight of their biases. (Roche C., 1999, p. 113)

The persons who joined the study earlier played a more significant role in defining the research areas compared to the persons who joined it later. However, this bias should have limited impact since the areas for discussion were very broad and each participant had the possibility of deciding the areas of enquiry he/she wished to touch.

Considering that the author and majority of participants are men, special care was given to involving the women participants in definition of research areas. Still, at the end of study, two women participants commented that the communications related to sexual experiences were posed from men’s point of view.

Mari: I think that this research should have distinguished between male and female views of sexuality, in the way the questions were posed… I felt that your communications were directed more towards men than towards women.

That gender bias does influence this research is also evident from the title of this dissertation, taken from a quote by Fritzon (2001) – “Female, male or disabled?”, while the title of this document is “Male, female or disabled”. This difference was noticed by the author, only when this document was almost finalised. It is also possible that the research was biased towards a heterosexual view of sexuality, however the only gay participant in the study did not comment on this.

Since the interviews were text-based, probably communications and analysis of messages were biased towards more articulate persons. Similarly, the research excluded persons non conversant with internet technology and those having difficulties with text-based communications.

Limits to the participation: Though the research aimed to involve the participants in all phases of the process, in reality this participation was limited as the role of reading different communications, selecting the parts to be included in reports, actual report writing, etc. belonged to the author.

Mariangela: My comments about my relationship with a priest have been put under the theme of religion. Actually, for me that relationship had no religious meaning. The way you have put it changes its meaning, though I can understand why you did that. It makes me look back at it in a different way.

For the second phase of the research dealing with thematic reports, majority of participants (86%) decided to receive them and comment on them collectively. However, they were strangers to each other and there was limited collective dialogue among them and some of them continued to write back individual comments.

Serena: I didn’t like the way some persons were commenting on lives of others, so I decided not to write back. I think some persons are ill-mannered and not ready for a civilised dialogue. This blocks me.

Mariangela: I shall like to explain why I didn’t want to be part of collective discussion. I have been so ashamed of myself all my life. Some of the things that I told you, I had never talked about them to any one… I don’t want them to know me. They can read about me but I don’t want any direct contact with others.

On the other hand, during the collective phase some participants had proposed to organise a meeting, to know each other better. Such a meeting could have been significant for promoting empowerment process among participants but the author was unable to pursue this.

Ethical Aspects of the Research

The research touched some very sensitive issues. The individual communications gave a possibility of creating a sense of confidence and participants often told things about themselves that they normally would not share with others. Some of the information was related to traumatic experiences. The ethical issues for such a research are fundamental. If the persons involved in the research are vulnerable, it is important to make sure that no harm is caused to participants and adequate support needs to be planned. (Sherry, 2002) Research should also be based on “informed consent” of the participants (May, 1997 cited by Barnes and Mercer, 2001 A). For this reason the following steps were taken the safeguard the participants of this research:

  • No information was asked regarding the cities of residence or address of participants. Persons were asked to chose any name that they liked for the research. Participants were informed that they had the choice of ignoring any question that they did not wish to answer. The persons were also informed that they could withdraw from the research at any time without any explanations.
  • As communications with individual participants covered a relatively long period (4 weeks to 4 months), care was taken to respond with empathy to messages containing emotional information. For such messages participants were asked if they were comfortable with the idea of sharing these with others or if these should remain confidential.
  • When thematic reports were prepared, these were shared only among the participants and they were asked to specify the parts they would not like to be included in reports for public and if they were comfortable with the names they had decided for themselves.
  • All participants were asked if they agreed with sharing of the final report in Italian through web pages and news-groups and to specify parts that they wished to be removed from it.
  • Even if participants have agreed that their information be shared with others, the author has decided to exclude the particularly sensitive and traumatic parts of experiences from all the reports.

Emancipatory Research, Participation & Expectations

The basic premise of emancipatory research paradigm is the recognition that marginalized, oppressed and excluded people have specific knowledge and skills, which need to be articulated, valued and collectivised. There is a huge gulf between wanting to challenge racism, sexism, homophobia or (dis)ableism and being able to do so in a way that has lasting emancipatory effects. (Corker, 2001)

For this research, a narrative approach was chosen. In narrative research it is generally agreed that interviews should be ‘open and fluid’ in order to enable the subject to ‘take the lead’. (Plummer, 1983) The ‘excluded voice thesis’ postulates that narrative methods provide access to the perspectives and experiences of oppressed groups who lack the power to make their voices heard through traditional modes of academic discourse. (Booth & Booth, 1996, p. 55)

No research is objective and there are many researchers who know this and work with the subjectivity that constructs our lives. However, research – or academic research - rather than activism aims to think through and argue coherently so that what is often gut reaction can win arguments based on sound ideas. (Smith, 2001)

Though the initial communication clarified that the research was an attempt to understand the factors influencing sexuality of disabled persons, a few persons did have other expectations from the study.

RR: Now that I have told you all my problems, I hope that you can give some idea about how to solve them.

Sand: I have told you all about my fantasies and desires. Perhaps you can tell me what you think about my sexuality? Is it normal?

The initial communication had also explained that the research aimed to be an open dialogue and that participants were welcome to ask any questions to the author. Majority of participants did ask more information about the author, the reasons for the study, the way it would be used and sometimes, more personal questions. The information that the author is also a medical doctor, was given only to those participants who asked a specific question about it and it was a problem for some participants.

Enzo: If I had known that you are a doctor, I wouldn’t have joined this research. Doctors are shit and I have had enough of them. They just want to control you and complicate your life.

Among the general information asked to participants there was a question asking them to explain their impairment. When some participants answered this question by quoting a medical diagnosis like Ostogenesis Imperfecta, they were asked to explain what it meant and this also created some confusion. Though the author had decided to not to enter into discussions related to medical model of disability, however there created some confusion in a few participants.

Claudio: Why I had thought that you are a doctor and you understand my condition. If you are not an expert, how can do you do research like this and give any answers to me?

Davide: Showing that normal families are those on the TV where everyone is healthy, is offensive towards us, sick persons. It is like saying that if one is sick then one is also stupid or that one can’t be happy.

Davide here called himself a “sick person”. He was not the only one in this group of participants who consider impairment as a “sickness”. Discussing this further with him, he wrote back: “I have no problem to consider myself a sick person. Honestly, looking at my body, I can’t say that I am healthy.” Some other participants raised the issue of impact of impairment on their sexuality and were not completely convinced by social model of disability.

Mari: After reading all the reports, now I understand why you insist on talking about disabled people instead of saying persons with paraplegia, etc. However, for me paraplegia is part of me and leaving it out seems like leaving out part of my identity.

Serena: All this talk about romantic love and fulfilment even if someone has an impairment, I don’t agree with it. I know this man who is spastic and can’t masturbate, he begs me to help him. Perhaps I am too hard but tell me, how does it matter, what others think about him, it is his own impairment...

There has been some criticism of disabled activists “reducing impairment to a common denominator in order to increase the political power of (the new understanding of) disability”. (Corker, 2001) However, the above comments made during discussions about the final report in Italian, did not provoke any comments from the other participants.

Chapter 4: Barriers to Sexuality

The research aimed to look at the impact of societal barriers on the sexuality of disabled persons. Barriers can be physical or they can be of attitudes of the persons, who surround you.

RR: I think that there are two kinds of barriers between disabled persons and non-disabled persons. The first are the architectural barriers and the second are what I call “barriers of heart”, which includes the attitudinal and social barriers.

Gaia: When all others in the group decide to do something that you can’t do, like hiking in the mountains or go sailing in a boat…in such cases, you tell yourself that these are not important, but inside it hurts you a little. Often so many barriers can be overcome but you don’t wish to involve everyone for participating, so you opt out by telling some excuse. Reality is that you are ‘tired’, tired of always doing everything with difficulty, always needing to invent ways to do things, which are a ‘natural right’ for others.

Mariangela: The barriers are a big problem, not only by limiting the occasions for meeting others – in so many places, you can’t go with a wheel chair, but also afterwards, when you already have a relationship. A simple stairs affects your relationship – or both of you stay out, or he must “help” you … outside my home, it is difficult to have an equal relationship with others.

Almost all the persons in the research agreed that physical barriers are important but can be overcome while the “barriers of heart” are more difficult to overcome, especially in relation to social and affective relationships.

Mariangela: I am always something different – inferior, superior, according to the occasions, but never equal, always different. This is so painful…men think that with some one like me, either you have to be serious or it is nothing. It is impossible to make them understand that you would be happy with some thing light, impossible to make understand that only some sex would be enough.

Davide: The non-disabled persons imagine the disabled persons as some one so infantile, that he can’t have sexual desires. In addition, physically the disabled person is not a model of beauty. Thus it is difficult to find a partner. If the person is also homosexual, the problems become even bigger…

Among the attitudinal barriers, attitudes of family frequently came up during the discussions. However, majority of participants identified this as a difficult area for discussion. Four participants decided not to express themselves on this subject, while the opinions among those who wrote about it, can be grouped in three groups. A small minority felt that their families played a positive role while the remaining were equally divided between - I don’t discuss sexuality in my family; and my family has negative impact on my sexuality.

Max: In our family you don’t talk about sex, not because it is a taboo but only because there is deeply rooted parent/son relationship. I don’t feel the need to talk to them about it. I don’t think that they feel that I am asexual, rather the opposite, but we simply don’t talk about it.

RR: When I was an adolescent, they did explain to me all the things that boys of my age come to know… I and my family are convinced practicing Catholics, so my parents feel that I need to make a sacrifice and that finding a woman is not my destiny. I agree with the catholic view but not with the idea that I must remain single…

Manuela: My family influences negatively on my sexuality. It is a brake to my already limited sentimental life. My parents don’t agree that I can have sex, are afraid that I shall be hurt or some thing, feel that they are protecting me but it is an additional problem for disabled persons when they live in families with closed mentality… 

Gaia: I must say that my family did love me very much, but at the same time, unintentionally, they have contributed to my insecurities. Even now, my relationship with my mother is very conflictual. We talk to each other everyday and half the time we fight. My mother is the only person capable of making me feel furious, make me shout and lose my calm, because she knows where to hit me when she wants to fight… I feel guilty and in debt with them for ever.. it took me a long time to understand this sense of guilt towards them…

Persons surrounding the children, especially parents can have tremendous influence in shaping their self-images. During this time period (early infancy), children are also consolidating ideas about gender and gender roles, or what it means to be a male or a female... by age five, most are well on their way to understanding the kinds of behaviours and attitudes that go with being female or male in this society. (Calderone & Johnson, 1990) Even if the sample for this research is very small, still it seems that persons having impairments since birth or in early childhood are more disabled, have lesser possibilities for sexual experiences and this probably again indicates the importance of role played by the family.

Do the families and societies behave differently with disabled girls than with disabled boys? Women with disabilities have particular reasons to fear violence, mainly from men and some sources of protection are less accessible to them… they may be trapped in parental homes by fear. (Hendey & Pascall, 1998, p. 415) Perhaps such issues influence the way families behave differently towards disabled girls?

Serena: The family influences a lot. First of all for the mentality, that is, since I am a woman, I must be put under a glass-bell and protected… my family is very good and they love me, they never make me miss any thing, even if they do have their defects. The first is linked to my limited self-sufficiency and so they are hyper-protective. I must admit that it annoys me a lot…I am still a virgin. I am sure that if I was a man, I wouldn’t be a virgin.

All the women participants in the research share this view that life is harder for them then for disabled men, though this view is not shared by all the men participants.

Internal Barriers

The past experiences and attitudes of persons and society surrounding us are internalised, influence what we feel and think about ourselves creating additional barriers, are not always easy to overcome. (Rieser, 1990)

Internalised oppression is not the cause of our mistreatment, it is the result of our mistreatment. It would not exist without the real external oppression that forms the social climate in which we exist. Once oppression has been internalised, little force is needed to keep us submissive. (Mason, 1990)

Majority of participants agree that their own attitudes and feelings are a barrier to establishing meaningful relationships.

Stefano: The image of being normal that I have is of my presentation of my dissertation for degree!! I was talking about my dissertation, and every one was commenting about how I spoke and not what I said, but that is my normality, the fact that beyond my way of talking and moving, there is what every one does, my normality.. I am afraid of reaction of others, it blocks me, stops me from expressing me. I want to speak, shout, wave my arms, but this fear of what would the other person think blocks me, it makes me afraid to come out from myself, to be Stefano… even I can’t understand my own recorded voice. I am the first to not accept the way I speak and the way I move.

Marinagela: The professor who operated me, used to take me to the University of Modena, where he taught. To his students, he used to show a film with me coming out of the psychiatric hospital, where I looked like a savage animal, and the students used to laugh, and then I was made to enter, standing up and walking with crutches. Some times the students clapped their hands. I had 15-16 years and I wished to die… from shame and humiliation.

Sand: Meeting others is like facing final exams. As long as it is with persons who know me, it is ok because they know my problems. However, if I have to meet new persons, for a long time I worry about the meeting… the non-disabled persons have a tendency to think that disabled persons, apart from being disabled are idiots and that makes me furious.

A few participants explain their strategies for overcoming these barriers, which range from self-acceptance, getting out and meeting others and irony/humour as a strategy for breaking ice with strangers.

Andrew: As soon as I can accept myself as I am, I don’t worry any more about others. Important is to accept yourself. When I meet others, I try to give the best of myself, trying to make good impression. Generally it works.

Walter: I remember that I was ashamed to go in the city, I felt observed and pitied, and I used to ask myself, what did I do wrong? Any way, slowly I integrated in society, not caring about my impairment. The important thing is to get out of your homes. If all disabled persons can go out of their homes, probably the social relationships would increase for everyone because this would lead to destroying the physical and psychological barriers, and children must be educated in a different way about respect for human beings…

Marcello: …irony is a positive thing, it helps you first of all, and then it helps others in feeling less embarrassed. I know that others are embarrassed about my disability, so I joke about it and make them feel that it is nothing dramatic and they can also joke and talk about it… however, some times, I am forced to behave in ridiculous way, in spite of myself, just to get attention from others and make them laugh, so that they accept to be with me, while if I am serious, I am refused…

Gaia: According to my close friend that I had before meeting Ross, many boys liked me (so I was not so repelling after all), but I was not aware of it and when I was aware, I avoided them (may be unconsciously). The fact was that I didn’t feel that I deserved love and desire (yes, even that). The thing which took me longest to accept was that even I could excite a man, even now it seems strange to me, but at least I take it as a matter of fact… Often, we women, especially disabled women, think that we can be loved only if we offer lot of love and sentiments, but that is not enough, it may be enough for a friendship, but a relationship requires attraction and for attracting you have to like yourself…

All participants agree that attitudes in the society, in the people surrounding them and their own feelings are all equally important. These barriers limit the opportunities for meeting others and for establishing meaningful relationships with others on an equal basis. Among all barriers, those related to the attitudes of family are particularly important in limiting the full expression of sexuality, especially for those persons who have impairments since birth or since early childhood. Gender is also important and women face much more barriers, especially in their families.

Chapter 5: Changing Environment

The barriers are continuously being challenged by disabled persons helped by the changing environment. Emergence of mass-media, information technology and the changing dynamics of religion are some of the most important developments affecting the barriers faced by disabled persons.

The last century saw the development of new mass communication technologies – newspapers, radio and cinema. Then over the last five decades, development of television, advertising and new information technologies including personal computers and internet, brought these mass communications to our homes. While the control of these mass-media continued to be under the control of a select few, growth of Internet related technologies can give opportunities to individuals to present their points of views and to network with each other. Religion, which had a stronger hold on family and societal values in the past has become less-important, religious values are often being challenged by humanistic values linked to more universal concepts of human rights.

Impact of Mass Media

If families and communities influenced the attitudes and behaviours, now probably these mass communication instruments have even more potential for influencing desires, dreams and attitudes.

They [disabling stereotypes] form the bed-rock on which the attitudes towards, assumptions and about and expectations of disabled people are based. They are fundamental to the discrimination and exploitation which disabled people encounter daily, and contribute significantly to their systematic exclusion from mainstream community life. (Barnes, 1992)

The mass-media plays a significant role in influencing barriers to sexuality of disabled persons. For example, advertising, media, and the easy availability of explicit materials on videotape and the Internet focus on the clinical act of intercourse. This focus places undue strain on sexual adjustment to a disability. (Carp, 2001)

Walter: All these things don’t affect me. In any case we need more information about disabled persons so that every one is aware that disabled persons are human beings like every one and with same rights. However in TV, the disabled persons are never there.

Max: Everyone says that it is better to be beautiful inside but I think that it is better if you can be beautiful outside as well. I love beauty…any way, you have learn to distinguish fiction from reality – I myself never desire the perfect family of Mulino Bianco[1] or to go and live in Beverly Hills… I liked the advertising for Benetton showing disabled persons, I am in favour of showing diversity of persons – it helps people to get use to some thing, which otherwise remains hidden.

Walter and Max above are more concerned by the invisibility of disabled persons in the mass media rather than by the disabling stereotypes. Mass media also present ideas about love, beauty, marriage and desirable bodies and life-styles. How do these messages affect disabled persons?

Mariangela: It is a complex situation. Regarding my sexuality, I can say that many things “stimulate my desire”. I can also say that often they make me feel more alone and when they speak about disability, they make me feel ashamed of myself… I think that the worst thing that the media does is to influence my taste – I mean, they educate my taste so that I look at my body with distaste, so that I am ashamed of myself.

Gaia: I think that very few persons can identify with the models of beauty proposed by mass media, so we all feel a bit inadequate or we just don’t care about it. It is like all those pictures of thin girls and our worries about getting fat – women tend to make a tragedy out of it but it seems that men care too hoots about thin girls (for them as long she breathes, it is enough!) So why waste your life?…The problem is that mass media create values about physical beauty in public opinion, it is almost a question of eugenetics.

Walter: I was struck by the film, “Born on 4th July” with the scene where Tom tries to have sex for the first time after his accident. It really made me very afraid because showing that all disabled persons are impotent is terrible, especially if it is the first film that you see after your accident! It can really create big psychological problems and to be afraid of women.

If mass media is responsible for creating and reinforcing barriers by promoting disability stereotypes and influencing the aesthetic tastes and desires, it can also be an instrument for fighting those barriers.

Mari: I identified with the character of Tom in “Born on 4th July” because he has to fight with the external situation but also needs to accept the fact that he is now paraplegic and in spite of it, he manages to use his personal experience as the basis for starting a collective fight for the rights of disabled persons.

Stefano: The image of Antonio Guidi[2] speaking at the television in Maurizio Costanzo show! It has been a big help to me because he is so similar to me. For the elderly persons, when they see me they can associate me with those images seen on the TV and it helps them in accepting me, and listening to my words rather than getting blocked by my way of speaking.

Almost all the participants agreed that the mass media has an important influence on building the public taste about perfect beautiful bodies and ideals of love and happiness However, majority of the participants did not give too much importance to the impact of these stereotypical images on the barriers to their own sexuality.

Internet Related Technologies

This site is intended to challenge the myths that disabled people are invisible, asexual, unintelligent, undesirable or incapable in any way. This site is meant to be a resource for both the disabled and able-bodied communities, for breaking down stereotypes, raising awareness, and inspiring those with physical and mental impairments to understand and appreciate their sexuality (Erin, 2002)

Erin is a disabled person and he has created a web page to talk about sexuality, which persons from different countries can access and read. If they wish, they can write back to Erin or start a discussion. This is one example to show that the new technologies related to computer and to telephone can have a strong influence on the life today. Two questions can be asked in this regard:  

  • Will this information technology revolution succeed in overcoming the excluding barriers for an expression of sexuality among disabled persons?
  • What kind of interaction is there where the real world meets the virtual world and how does it affect the sexuality of disabled persons?

The opinions in the group are almost equally divided between those who feel that information technology is going to change the lives of disabled persons and those who feel frustrated by it.

Claudio: These new technologies have no effect on my real life and my sexuality.

Costa:  Negative. The new technologies, especially internet favour only virtual encounters, where you can’t have any real idea about the persons with whom you communicate. For a real relationship (be it friendship or love) you need physical presence because behind a computer, a chat or a telephone you can present yourself as you wish.

Mari: Internet, for a disabled person is today a big opportunity for communicating, because there is no physical impact which can create an initial prejudice and you can know persons for who they are really and not how they look!

Andrew: All things considered, this is another opportunity to talk about sex and more in general about our feelings. I have made some new friends through internet. I also met a girl from Rome, whom I had known through chat. It was a positive and enjoyable experience.

Davide: I like talking with other gays in the chat. I also tell them that I am disabled because I want a sincere relationship. I feel that technology is one of the few things, in favour of disabled persons.

When the oppressiveness of the gaze may negatively impact on disabled people, especially when impairment is visually apparent, meeting online can provide another medium for presenting the self, where visual cues for evaluating others are typically inaccessible (Bowker & Tuffin, 2002, p. 328). However, most of the participants who feel positive towards the new opportunities offered by information technology, also have some reservations about its role in facilitating any “real” contacts. Many participants express their frustrations at the difficulties of taking forward the online relationships to the real world.

Stefano: Through Napster, I have tried chatting. If I don’t talk about my disability, then every thing can be fine and I get the feeling that others like me. But if I talk about my disability then suddenly they feel that I am strange and no longer interested in knowing me.

Manuela: The computer and telephone are two things without which I can’t live. They have made it possible for me to meet many new friends. However, often I hate them since they don’t allow me a physical contact with others.

Mariangela: I started visiting chat sites two years ago and it was an interesting experience. You can’t see the wheel chair on the chat so probably I behaved as if it was not there. However as soon as I felt that other person was flirting with me, I felt obliged to tell that I didn’t walk. And, in different ways, they just disappeared… the result is that I stopped visiting those chat sites.

Milo: The cybersex doesn’t interest me. Perhaps I don’t have much fantasy but I rather prefer the warm touch of a woman, to feel the softness of her skin, the sweetness of sucking her body… I want to look in to her eyes when I wake up in the morning. Looking at the computer screen is not enough for me. Only fucking is not enough for me, I want love.

There are studies showing how online environments enable users to consider new ways of thinking about their identity as a textual construction, at once fluid and flexible, rather than fixed, stable and unified. Yet at the same time, by eliminating disability from the social sphere in order to pass as non-disabled, differences are denied and are already marginalized voices are silenced even further. (Bowker & Tuffin, 2002, pp. 329-330). Social interaction through online communication, without requiring physical contact can be useful for breaking out of isolation created by the barriers, for sharing experiences, for networking, but when such communications are seen as a prelude to a desired physical intimacy, the same barriers again rise up in that space where the virtual world meets the “real” world.

The recent growth in Internet access has made it possible to investigate the impact of email on personal relationships together with those that are work-related…. results portray a "thin world" associated with email use - one in which people tend to have relatively weak ties with their communication partners and where communication partners are more spread out than in the world of non-email users. (Kanfer, 1999)

Changing Role of Religion

Religion is not some thing new. Probably it goes back even before the recorded history of human beings. Yet, the past decades have raised new issues, creating a crisis for the religions. For example, religious dogmas now have to contend with Universal Declaration of Human Rights. This is reflected in way public opinion and mass media pounce on any declarations by religious leaders, which may be seen as infringement on civil and human rights.

Christianity and more specifically Catholicism predominates in Italy. St. Agostino of Ippona was one of earliest christian leaders, who codified sexual morals, who felt that sexual intercourse was exclusively for procreation, trying to get the least possible pleasure from the act. (Mannucci, 1996, p. 19). For majority of Italians, including many church leaders, such a position would be probably laughable today.

Religion was not identified as a specific area of discussion by the participants and yet the issue came up repeatedly during the discussions, showing its continuing and changing importance in their lives.

George: As a child I used to go to the church. They taught us that homosexuality was an act against nature and wrong. I don’t know if they were right but I am sure that we must respect the choices each of us makes. My family has taught me to think of right and wrong and not to worry about religions.

Marcello: In Italy the religion (Catholic Church, the Pope) enters all our lives and they all try to oppress us so that we can’t have independent thoughts. However this behaviour is only false and hypocrite, it just makes that we can’t be together as a collective group, that we remain divided in our different pathologies and that we don’t ask for our rights as happens in other countries of Europe.

Roberto: The sexual costumes of people have changed so much that the catholic church must also interpret these themes in a different ways, even if they have to remain faithful to the dogma of our Faith.

Walter: About my girl friend – you see, she is a special person and even if she also desires me, she is very religious so for her having sex before marriage is not correct (I don’t think like that)…

Gaia: - The experience of Faith has been very important for me, it helped me to come out of my isolation … but in my parochial group they decided that I should be a nun, while I wanted a family and marriage, but perhaps they thought that it was above my possibilities. They said God wanted this from me, but I couldn’t believe that God could have asked this from me if He had given me desires? They were convinced that they knew what was good for me. That’s why now I have a healthy diffidence towards those who claim to speak in the name of the God… Finally it all comes to negating the possibilities of having a sexuality, because for some parts of the church, sex is something dirty, to be limited and imprisoned, especially for women and even more so for disabled women.

Mariangela: On our fourth or fifth meeting he told me that he was a priest… he never called things by their name and this hurt me a lot. For once in my life I wanted to be acceptable to some one. I would have done any thing to gain his affection…he said that he felt “anthropological curiosity” for me – imagine saying this to me, when I already felt so different from others! He said that behaviour is like water, it takes the colour of the container – which meant that the fault was always mine, it was my container that was not good enough…the maximum compliment that he made me was that “I was beautiful inside”. I was there nude and ugly outside, I felt hurt… only after a long time I understood that the problem was not mine, it was he, who had the problem. 

These voices about religion don’t have a logical thread running through them probably because they come in different contexts. Yet they do touch upon the changing role of religion in the lives of participants. They have the strength to oppose it and refuse it, if they feel that it is interfering with their desires and choices.

The power of mass-media, the development of internet related technologies and the changing role of religion are part of the changing environment, some times allies of tyranny of non-disabled majorities, some times allies of disabled persons in overcoming the barriers.

Notes:

  • [1] Molino Bianco or The White Mill, is a leading Italian company making biscuits, bread, etc. The publicity of this company was cited frequently by different participants.
  • [2] An ex-minister in a past Italian government, a disabled person

Part 1 - Part 2 - Part 3

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