Sex education and improving capacity in people with intellectual disability to make sexuality-related decisions

by Eileen Dukes

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Introduction

The area of consent, particularly in relation to sexuality, is a cause of concern to intellectual disability (ID) service providers in Ireland. The ambiguity of the current legislation on consent creates considerable challenges at individual and policy level for most organisations. The simple question of who should be allowed to engage in what sexual behaviour is extremely contentious and can be dependent on the variability of sexuality-related values of carers and service providers. A paradigm shift to a human rights model of disability is underway. Western society is gradually increasing its recognition of the basic human rights of people with ID. While the right to sexual expression is also being recognised, anxiety, uncertainty, discomfort and misinformation about the sexuality of persons with ID remain. A rights-based approach may be considered a liberal approach and may not be accepted by all. Service providers and families recognise the struggle between promoting rights for people with ID and protecting them from harm, when impairments interfere with the ability to make informed decisions.

This discussion will examine capacity to consent as a criterion in determining the boundaries of sexual expression and the role of sex education programmes. However, it may be useful to begin by offering some clarification of what the term ‘sexuality’ means.

Sexuality

A misconception generally held regarding human sexuality is that it means the drive to have sexual intercourse. However, this is just one aspect of sexuality. Human sexuality has many facets and having a physical sexual relationship may not be the most compelling one. Our sexuality is intimately connected with our need to be accepted and liked, to feel valued, to display and receive affection, to look and feel attractive. Sexuality extends far beyond physiological experiences (Rushton 1995; Morrissey 1998). It is concerned with who we are as human beings, how we feel about ourselves and what we feel we have to share with others. Sexuality does not develop in isolation from other aspects of identity (Edward and Elkins 1988) and much of what is appropriate sexual behaviour is appropriate social behaviour. Thus, socially appropriate behaviour is linked to sexuality development.

Consent

Ames and Samowitz (1995) suggest that ‘…the principal stumbling block for many professionals, administrators and parents in enabling individuals with developmental disabilities to exercise their rights to sexual expression seems to be the issue of consent to sexual interaction with others’ (p 264). Determination of consent to sexual expression in persons with ID is a complex issue. The criminal law in Ireland aims to protect people with ID from sexual exploitation, but it can be argued that the law prevents people from having appropriate and satisfying relationships. Section 5 of the Criminal Law (Sexual Offences) Act 1993 provides that it is a criminal offence to have or to attempt to have sexual intercourse with a mentally impaired person (other than a person to whom one is married).

Therefore, consent is not a defence. But, it is important to consider that the person with ID may well have the capacity to consent to sexual expression that falls short of sexual intercourse. Legal and clinical ramifications can vary, depending on the type of sexual contact. Stavis and Walker-Hirsch (1999) categorise the different types of sexual contact as follows: (a) activities not generally regulated by the state such as displays of affection, masturbation, access to certain erotic material, (b) activities involving mutual agreement and consent, i.e. mutual masturbation, sexual stimulation by another person, (c) activities requiring the highest level of consent, such as sexual intercourse. This analysis demonstrates the usefulness of a situation-specific decision-making mechanism in determining capacity to consent to sexual interaction.

The most widely accepted legal criteria for valid consent to sexual contact are knowledge, understanding and voluntariness (Stavis 1991). Some people will never meet all the criteria, but this should not preclude them from expressing themselves in a sexual way. The notion of degree in relation to consent is grounded in the Scottish Disability Law (Adults with Incapacity (Scotland) Act 2000), which holds that consent is not static. In other words while a person may be deemed incapable of giving consent at one point in time, it may be possible through facilitation or education for that person to be deemed capable of giving consent at a future date. Inherent in this law is that in assessing capacity, nobody is automatically deemed incapable on account of having a certain disability or illness. It is also of note that within the terms of the Act is a recognition that incapacity is not ‘all or nothing’.

Sex education programmes

Research on the sexual knowledge, experience and sexuality education of people with ID highlights educational and social disadvantage. McCabe (1999) compared sexuality.related variables among people with developmental disability, people with physical disability and people without disability. The findings showed that people with developmental disability had the lowest level of knowledge about sexuality, had less experience with dating, intimacy and sexual interaction and fewer opportunities to learn about sexuality. McCabe concluded that the needs of this group for sexual knowledge and experience were not being met. Findings from a study by Cheng and Udry ( 2002) suggest that intellectually disabled adolescents have little exposure to sex education in school, and their parents tend not to discuss sex, birth control and pregnancy with them. The Canadian Guidelines for Sexual Health Education (Health Canada 2003) note that very often sex education is not provided in schools for the intellectually disabled, parents tend to shy away from the topic, and socialising is usually chaperoned. Hence, typically this group has few opportunities to learn about sexuality. Even where intellectually disabled youth are integrated into mainstream schools and are provided with a sexuality education programme this may not address their specific educational needs or match their level of understanding (Schwier and Hingsberger 2000). What is needed is full access to comprehensive and appropriate sexuality education for people with developmental disabilities (Di Giulio 2003). Standard sexuality education curricula may not be suitable because they may not match learning style or levels of understanding.

Data on the efficacy of sexuality education programmes for persons with ID are beginning to emerge (Bratkovik and Teodorovic 2000; Murphy 2003). Research by Dukes and McGuire (2009) demonstrated that lack of information, and not lack of understanding, resulted in reduced capacity to consent to sexual interaction and that capacity to make sexuality.related decisions could be improved through sexuality education. However, programme provision is not sufficient. There is a need to match programmes to individuals by taking into account interpersonal and contextual factors. The Dukes and McGuire study identified the need to sensitively match programmes to learning style, skills and abilities. A person’s history, vocational environment and home circumstances must also be considered, as information alone will not be experienced as empowering if the environment is not supportive of the individual as he or she attempts to assimilate new learning.
Implications for practice

Achieving balance between protection and expression in relation to sexuality is a challenge for service providers and carers as we move further towards a rights-based model of service provision. This discussion has attempted to add to the discourse on two aspects of the issue, consent and sex education, and some conclusions can be drawn to guide future practice.

The person with ID needs to be continually facilitated in gaining and maintaining an understanding of the role of sexuality in his or her life. Ongoing sexuality education and reinforcement of past learning are important, as decay of information can occur over time (Dukes and McGuire 2009). Loss of previously acquired knowledge may be a result of the many disadvantages that people with ID face. They are less likely to be able to benefit from the usual environmental reinforcers of information; reading level may limit access to information; they may need more time; they may need more repetition.

There is need for improved access to individually tailored sexuality education programmes for people with ID. Given that a one-to-one format of programme delivery is labour intensive and may limit access for many people, the possibility of delivering programmes to groups of perhaps 4 to 5 persons should be explored—matched according to their learning style and functional strengths.

Some of the benefits of a one-to-one format of presentation could be maintained through provision of sexuality education on the internet. Pendergrass et al (2001) suggest that the internet can be a useful tool to provide accurate sexual health information to the disabled community. Indeed this would have an additional advantage over face-to-face programmes in that it can be accessed a number of times, thus proving a valuable resource to boost learning.

In conclusion

Curen (2009) points out that access to appropriate sex education for people with ID is hampered by a society that is not good at considering this group as sexual beings. As we have seen, many people with ID currently receive little or no sex education. Full access to appropriate sex education is paramount and matching programme content and mode of delivery to the needs of the individual is a core consideration. It is also well for us to remember that providing sexuality education for persons with ID will not create sexual feelings. These feelings are already there as sexuality is part of each one of us.

Eileen Dukes is Senior Clinical Psychologist with Kerry Parents and Friends Association where she has worked in various capacities for the past fifteen years. She recently completed a Masters degree in Intellectual Disability Studies with the University of Birmingham. She contributes to the academic component of the Doctorate in Clinical Psychology programme in the University of Limerick where she teaches on issues of ageing and intellectual disability. She co-authored a research study on enhancing capacity to make sexuality-related decisions in people with an intellectual disability which was published in August of this year.

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