A Challenge To Be Met: Significance of Sexuality Issues in the Lives of the Intellectually Challenged.
Ekta Tuli

In a conventional society such as ours, various myths mushroom and several stereotypes prevail especially concerning persons who do not fit into the archetypal roles set as ‘the way of life'. Individuals are discriminated against on the basis of religion, class, sexual preference, disability, etc. Not only are they jeered at, they are deprived of their rights and privileges as citizens and sometimes, even as humans.

Society, in general, has produced stereotypical notions about persons who are intellectually challenged. These discriminatory attitudes have brought about feelings of pity and ridicule amongst individuals for those who are intellectually challenged. It is important, and perhaps ironic, to note that it is not their disability per se that is the basis of their worries but how society, on the whole, views them. The significant concerns that the intellectually challenged face are often left unnoticed. This could be perhaps because most individuals tend to see these issues as trivial since persons who are intellectually challenged are seldom viewed as ‘individuals' who have rights. Another possible reason could be that these issues generate a sense of discomfort among most people.

Of the many concerns that both persons who are intellectually challenged and their care providers deal with, sexuality related issues are crucial. Sexuality is an extensive concept that covers varied issues. It includes not only sexual behavior but also our sexual identity, gender identity, sexual orientation, roles, personality, relationship patterns, thoughts, feelings, attitudes, etc. It also includes the social, ethical, moral, cultural, religious and spiritual issues that are connected to an individual.

Therefore, sexuality seems to be the core of an individual's life from her/his birth to death, playing a role in almost everything that the individual does and is . Nevertheless, it is a sad (but true) fact that sexuality is a source of definite discomfort in society, so much so that even uttering sexuality related terms could cause great anxiety in most individuals. Society stigmatises the issue of sexuality in such a way that there is a sense of ambiguity allied with overpowering emotions of guilt and shame around the issue. It is quite an irony that while sexuality is such an important and indispensable part of each and every individual's life, there is so much difficulty in including and accepting it in a comfortable manner. Why is it so difficult to talk about sexuality?

The concept of sexuality has been left unexplained and behind the veil for so long now that people are very ‘comfortable' with that state of mystery. Bringing it now in the open and discussing it, especially with regard to persons who are intellectually challenged, can be quite an arduous and threatening task. According to Anne Finger (1992), “Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It's easier for us to talk about – and formulate strategies for changing – discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction.” However, it is also important to realise that talking about sexuality and creating avenues to bring forth the issue are key ways in which people, and perhaps society as a whole, can increase their ease around the issue and help in including it as a significant part of our lives.

In a country like India, where sexuality itself is not spoken of openly, persons who are intellectually challenged have been especially denied sexuality education. To be able to perceive any possible relationship between sexuality and disability would be far from the society's psyche. This is perhaps because the intellectually challenged are thought to have either no right to sexuality information or any need for it. Furthermore, they are often considered asexual and are consciously sheltered and protected from sexuality related issues. This is because society's definition of sexuality itself is so narrow that some people, such as the intellectually challenged , children, and senior citizens, are viewed as being incapable of feeling any sexual desires/pleasure. W hether or not anyone engages in sexual behaviour, s/he is a sexual being from the day they are born and they continue to remain so regardless of whether or not they engage in any sexual activity throughout their lives. Moreover, society needs to be sensitive to the fact that persons who are intellectually challenged also have the need for, and the right to sexuality education. It is important that care providers do not ignore or run away from the sexual selves of the persons who are intellectually challenged. They need to realise that sexuality related concerns must be actively addressed at every stage of development, in accordance with what the person can comprehend, so as to make the individuals aware of their bodies and to protect them from any form of abuse.

It could be possible that some parents and care providers are themselves uncomfortable and uneasy around sexuality related issues. Concepts of sexuality arouse emotions of guilt and shame in them so much so that discussing these issues with other people, especially persons with intellectual disabilities, becomes an awkward and complicated task. Furthermore, when care providers themselves are uneasy around the issue, searching for the words to express the concept of sexuality can be an extremely stressful task in itself. Concerns related to the language that is to be used to communicate about sexuality related concepts could cause anxiety. “What, when and who should talk to the persons who are intellectually challenged regarding sexuality issues?” are queries that often tend to crop up. Perhaps there is a need to redefine the concept of sexuality and issues related to it. For, clarifying the issue for individuals could be the first step to ‘normalising' it. This could make it easier for people to communicate with someone else regarding issues of sexuality.

It is often difficult for care providers to directly engage in a conversation with persons who are intellectually challenged regarding issues of sexuality. They may try to, but in doing so may communicate their own anxieties to them. This could do more harm than good. The important point is to provide persons who are intellectually challenged correct information on sexuality related issues, with sufficient ease and comfort and in a way that is easy for them to comprehend. Having professionals talk to them about sexuality could be beneficial. Another way to make sexuality education accessible to persons who are intellectually challenged could be by including it in the curricula from an early stage.

An initiation to sexuality education can start in childhood when the child starts exploring her/his body, instead of being a tiny lesson during the onset of puberty. Parents and care providers are ecstatic when the child can identify her/his ears, eyes and nose. However, they tend to flinch when the child explores her/his genitals. We often hear children refer to their genitalia as “chi-chi”, and this phrase manifests itself in their later lives when they treat their genitals as dirty or forbidden parts of their bodies. To be able to generate a sense of well being around the issue of sexuality, parents and care providers need to start communicating with the person who is intellectually challenged at a very early age. This can help in bringing about more comfort in the person with her/his sexuality.

On the other end lies another misconception, i.e. persons who are intellectually challenged are “oversexed”. This misconception could have its roots in the fact that the intellectually challenged are sociable and forthcoming, or maybe because they are unable to recognize the so-called ‘socially appropriate' behavior.

Persons who are intellectually challenged are especially prone to abuse, be it sexual, physical, or emotional. Strangers as well as care providers who are involved in the individual's routine activities such as bathing, changing clothes, etc, could abuse intellectually challenged individuals. Using strategies like making them aware of what is generally perceived as a ‘good' and a ‘bad' touch as well as informing them of their right to say ‘no', could be of advantage in preventing this exploitation. Talking to the care providers (of persons who are intellectually challenged) about abuse-related issues could be another strategy to prevent the abuse.

But is it only because a person may get abused that we need to talk about sexuality related issues? What about touching oneself, masturbation, pleasure and establishing a sexual relationship with one's body? Or with other consenting persons? These are issues in the lives of those who are intellectually challenged that need to be attended to as well. It is difficult and more so, unfair, to ignore them as integral parts of a person's sexuality. Along with this, there is a need to redefine conventions like companionship and marriage so as to try and include them in the lives of those who are intellectually challenged.

Gender also plays an important role in the issue of disability, especially with persons who are intellectually challenged. For example, some people feel that having a daughter with a mental disability could be more difficult than having a son with a disability, since there are complications such as sexual abuse, unwanted pregnancies, and difficulty dealing with menstruation. On the other hand, sons who are mentally disabled are thought to be more violent, aggressive, and difficult to control.

There is a mounting call to discuss issues of disability and sexuality among those working with children and adults who are intellectually challenged . Furthermore, over the last fifteen years, disabled people around the globe have issued a major challenge to their oppression (Driedger, 1989; Coleridge, 1993).

TARSHI (Talking About Reproductive and Sexual Health Issues), a New Delhi based NGO, works towards enhancing peoples' reproductive and sexual health choices. The NGO was started in 1996 and we believe that all people have a right to sexual well-being, and to an enjoyable and self-affirming sexuality . TARSHI's focus is to especially reach out to women and young people. Along with running a telephone helpline, providing information, counselling and referrals on reproductive and sexual health issues, TARSHI has brought out publications on sexuality related concerns; and conducted interactive sexuality education sessions in schools and colleges. Several special schools and NGOs working in the area of disability have approached TARSHI to conduct sessions on sexuality issues. Because TARSHI believes that all people have a right to sexual well being, persons who are intellectually challenged are definitely included.

In order to increase our understanding of the challenges faced, and the strategies used, TARSHI organized two meetings in May and August 2002, where parents, care-providers and professionals working in the field of intellectual disability came together. Everyone agreed that persons who are intellectually challenged do have concerns around sexuality. The NGOs working in the field of disability listed down their own strategies of dealing with sexuality related concerns of care providers and people who are intellectually challenged.

There was a spirited as well as productive discussion around sexuality and the importance of having sexuality education for persons who are intellectually challenged. People working in the field, as also the care providers of persons who are intellectually challenged, suggested materials like:

Many mentioned the importance of the ‘interactive element'. They stressed on the fact that it could be beneficial if parents, siblings and care providers (of persons who are intellectually challenged) work together and share their own strategies of addressing sexuality issues.

A transformation in the attitude of people towards persons who are intellectually challenged is not possible until a determined attempt is made to restructure the attitudes of society at large. Although some NGOs have brought to light their attempts at dealing with sexuality education, it would be beneficial if this information could be circulated more effectively, in order to make it accessible to the larger public.

The two meetings that TARSHI initiated were a preliminary step towards making a change within the area of disability, specifically for persons who are intellectually challenged, with regard to sexuality and related issues. The fact that such meetings even took place show that there is a considerable need for bringing issues of sexuality and disability out in a more earnest manner. For only through understanding and accepting the significance and seriousness of issues do we work towards making a change. We still have a long way to go but are encouraged by the genuine level of interest and the degree of participation shown by the care- providers and professionals who participated in the meetings.

References

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