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Bringing sexuality into dialogue using a CAT approach to the sexual rights and sexual relationships of people with Intellectual Difficulties

McCormack, M., Swarbrick, B., and Greenhill, B., 2014. Bringing sexuality into dialogue using a CAT approach to the sexual rights and sexual relationships of people with Intellectual Difficulties. Reformulation, Summer, pp.22-28.

When men and women with Intellectual Disabilities (ID) access health and social care, their sexuality is often invisible and omitted or distorted, pathologised and foregrounded. Gender often predicts the reciprocal roles through with the person’s sexual identity and their carer’s understandings and constructions are related to. Women are viewed as ‘passive eternal children’ or ‘victims’; men with ID are frequently constructed as ‘predatory’ and ‘hyper-sexualised’. These stereotypes have a strong cultural purchase and legacy. Historically dominated by eugenicism and paternalism, attitudes to the sexuality of people with ID have more recently been superseded by understandings based on sexual rights and capacity. The impact of these reciprocal roles and enactments on some core areas of practice is considered.

CAT and Sexuality

Cognitive Analytic Therapy (CAT)’s understanding of the social formation of the self is based on Vygotskian activity theory and Bakhtin ‘dialogism’ (Ryle & Kerr, 2002), sharing some features with social constructionism (Wilberforce, 2013). Social constructionist accounts of sexuality (Gangon, 1977; Gangon & Simon, 1974) have articulated accounts of human sexuality based on the theory that people learn to be sexual through ‘scripts’ that involve both external and interpersonal factors. Gangon (1977) describes how people pick up cues from their social environment, “acquiring and assembling meanings, skills and values from the people around them” (p. 208). Sex is only experienced as very socially and emotionally charged because people have been taught to believe it is special. If people have not been taught that particular activities are meant to be erotic, intimate, passionate, or “sexy”, they will not assign these meanings to them. From CAT’s relational and dialogical standpoint, how others perceive and respond to someone’s actions impacts greatly on how the person sees themselves and their place in the world. Within CAT, these patterns of how we get on with other people and how we see ourselves are called reciprocal roles (RR).

There has not been a great deal written about sexuality within CAT. Wood begins to outline some key concepts (Wood, 2003), but arguably within a pathologising discourse (see Denman, 2003). Knight (2008), describing her experiences as a pregnant therapist, comments that this omission may partly reflect the taboo of sex in therapy. As an embodied, relational way of thinking, CAT surely has a great deal to offer our understanding of the enactments we may get caught in as people with Intellectual Disabilities, therapists, carers, parents and professionals as we try and make sense of sexuality and disability.

People with ID and Sexuality

Recent research by Rushbrooke, Murray & Townsend (2014) reports that relationships are both desired by and important to people with ID, who were found to have very similar experiences and needs to people without ID. A number of factors, however, may alter how reciprocal roles involving sexuality are internalised by people with ID. As Wilberforce (2013) suggests; “identity negotiation is not so easy from a position of little power; the person with an intellectual disability can become trapped by the definitions of more powerful others” (p.111)

McCarthy (1999) describes how, historically, people with ID were often held in one of two contradictory positions; either treated as if they were children, eternally innocent and sexless (Kempton & Kahn, 1991) or potentially dangerous with an uncontrolled, uncontrollable sexuality (Koegel & Whittemore, 1983). Similarly, Brown (1994) observes how people with ID are often constructed as ‘sexless innocents’ or ‘degenerate monsters’. The impact of eugenics on society’s relationship to the sexual identities of people with ID was to represent their sexuality as “a terrible danger to the race”, a threat to the species, based on the erroneous assumption that people who have an ID will themselves have children with Intellectual Disabilities. There has been a change in attitude towards the sexuality of people with a ID from compulsory sterilisation and segregation in isolated institutions to a more rights based approach (Craft, 1996; McCarthy & Cambridge, 1996; Grieve, McLaren, Lindsay, & Culling, 2008) which we will discuss later. This shift was mainly due to a more liberal and open attitude to sex that emerged from the social movements of the 1960s, the adoption of principles of normalisation in ID services and the availability of contraception (McCarthy, 1999).

Parents, in general, are not good at helping their children achieve psychosexual maturity (Craft, 1983). Research has shown that attitudes of parents and carers to their ‘children’ with ID are often negative, overprotective and choice limiting (Smyth & Bell, 2006). A greater proportion of people with ID live with their formative families well into late adulthood. Therefore, people with ID living with their families are often still ‘in’ the dynamics of the early developmental relationships from which they internalised their relational templates.

There are several complex senses in which sexual, and other, scripts may become heavily ‘saturated’ or ‘stuck’ within these relationships. Firstly, a ‘double dialogue’ is played out, where the internalised re-enactment is compounded by the formative relationship present in the home; the reciprocal roles and interpersonal patterns of childhood often remain a physically embodied relational constant in the lives of adults with ID. Secondly, the relational system of the person with ID may be quite a closed relational system, with few opportunities to form adult reciprocal relationships with other people. Thirdly, these are very well established and old templates which have been present from birth. Finally, the labelling mechanism of ID is overlaid, so there is little room for adolescent experimentation and free play in which to explore differing non-intimate and intimate peer relationships. In addition, people with ID are likely to be in some way dependent and quite tightly held in the child pole of these reciprocal relationships. The result is that many people with ID are still doing a relational dance with their family of origin, rereading steps in a system which is also their developmental system and unable to invite new reciprocations. Potter and Lloyd (2013) posed the question of whether a person’s ‘emotional’ disabilities are induced by role behaviour by parents and carers whose desire to protect may restrict, resulting in untried skills in the person with an ID (see also Sellars, 2002). This may apply no less fully to sexual roles and identities.

The ‘conservative air of services’ often replicates these procedures. Aunos & Feldman (2002) suggest that people with ID are infantilised by both parents and care workers and Szollos & McCabe (1995) report that the sexual needs of people with ID are frequently “ignored...curtailed or actively denied by professionals as well as the general community” (p.206). Fitzgerald and Withers (2011) found that women were being sexually regulated by parents and service providers through being ‘prohibited’, ‘over protected’ and ‘infantilised’. These omissions and restrictions are compounded by the difficulty that people with ID don’t have the same opportunity for private peer interaction (Emerson & McVilley, 2004).

Oliver, Anthony, Leimkuhl & Skillman (2002) argue that the opportunities for people with ID to experience healthy sexual expression and development are commonly limited. Lack of access to these relationships with peers further restricts opportunities to learn different ways to relate. While Elley (2008) demonstrated that peers often provide high levels of sex education amongst young non-disabled people, Emerson and McVilley (2004) found that people with ID spend little time in private social interaction with their friends. It is no surprise that in her study on sexuality and women with ID, McCarthy (1999) found that women described their avenues for learning the meanings ascribed to sex were few in number and thin on information. Meanings acquired were either through direct experience (a significant amount of which was abusive) or factual, in terms of sexual education, but none of the women described spoke of being informed of feelings around sex in terms of pleasure, desire or arousal. Jahoda and Pownall (2014) found that, as a result, young people with ID know less about sex than their nondisabled peers.

Key Reciprocal Roles

These culturally distilled stereotypes may become expressed through key reciprocal roles which may characterise the spaces within which people with ID, their careers and professionals may allow their sexuality to be viewed. We hope that in naming these, from the literature and our own practice, we might be able to clarify the relational dynamics which shape so powerfully the experience of sexuality for many people with ID. We have drawn here on Fisher and Harding’s (2009) concept of ‘the rebel role’. The resounding, anxious silence around the sexuality of people with ID can leave unknown, unspoken places where the choice feels about conforming or rebelling. In terms of RRs within sexual identity in ID, typical RR are ‘abusing to abused’, ‘predatory to childlike’, ‘protecting to protected’, with men often related to as if they only inhabit the top end of the RR and women often positioned exclusively at the bottom.

Figure one below shows the enactments as they might occur between the individual and the system. Figure two shows these enactments as a simplifi ed reciprocal role. Exits are described throughout the rest of the article and particularly in the concluding section.

See Figures 1 & 2 on the next page.

Dating, sex education, sexual abuse, consent, LGBT issues, parenting, working with sexual offenders and working with staff teams are all complex areas of practice where CAT might help our ability to understand and intervene. Some of these areas are considered below.

Capacity to Consent to Sexual Relationships

Viewed as an ‘enabling’ piece of legislation (Brown & Lloyd, 2012; 2013), the Mental Capacity Act (2005; MCA) underpins our thinking about capacity to consent to relationships. However, the MCA has been critiqued for assuming cognitive, rational decision making whereas we know that many of our decisions are not rational (Kahneman, 2011). Brown and Lloyd emphasise ‘the primacy of emotion and relationship’ in decision making. In the context of sexual trauma, grooming and devalued identities, decisions around sexual choices need supplementary frameworks, as Brown and Lloyd’s work on the MCA elaborates. By being able to map procedures around sexual decisions and “contextualise decision-making in terms of history and relationship” (Brown & Lloyd, 2013, p. 172), CAT has potential to support service users to hover above familiar procedures and slowly make more mindful decisions and choices than those based on habitual, damaging reciprocal roles. By helping us make side-by-side decisions, CAT may also be able to support practitioner dilemmas of ‘step in’ (duty of care) or ‘step back’ or (dignity of risk) by providing a method for working collaboratively to track out relational procedures in making sexual decisions.

Being Out with a Intellectual Disability

Being a lesbian, bisexual, transgendered or a gay man (LGBT) with an ID has been described as occupying a position of double discrimination (Abbott & Howarth, 2005), whereby careful orchestration and sharing of aspects of identity becomes crucial in avoiding experiences of bullying and rejection. The identity of disability may not always be welcome on ‘the scene’ the identity of gay may not be acknowledged within the world of Intellectual Disability. Again responses can be very gendered. Where men with ID are constructed as predatory, two men with ID having a sexual relationship is often understood as extremely problematic (Grieve, McClaren, et.al., 2008). Women, conversely, are almost utterly invisible. Exits may involve providing opportunities for people with ID to meet other LGBT people and resisting stereotypes in our own and others’ practice.

Working with Staff Teams

Staff teams, supporters and carers have the potential to intentionally or unintentionally censor the sexuality of people with Intellectual Disabilities and its expression. Staff and carers have the power to abuse, or to model and co-create spaces for people with ID to express and enjoy their sexuality. Service users have described the ‘conservative air of services’ whereby the assumed ideal service user is asexual, well behaved and ‘compliant’ and where the professional clinical service provider would never think of bringing up a topic as controversial or taboo as sex. Arguably, there are different rules for all of us in institutional settings. There is some evidence to suggest that staff views are amenable to change through training (Rose & Holmes, 1991) but perhaps these changes could be deepened and more sustainable.

In a staff training session on boundaries and safe touch run by one of the authors and a colleague, staff working with a female service user began to disclose the discomfort they experienced at some of the ‘accidental’ touch she initiated. This would often involve her tapping someone on the arm but ‘inadvertently’ brushing against their chest or other areas of the body which staff felt were inappropriate but could not be certain and didn’t want to ‘accuse’ her. As each Support worker shared their experience, the relief was palpable as they realised that theirs was not an isolated account. Sharing their responses allowed us to reflect on how silenced they had felt and what this woman might be communicating about her own experiences of violated boundaries and of not being able to tell. Feeling disempowered by limited control in other areas of her life she would seek to touch others in a way which they found intrusive and shameful but unable to challenge, this enabled her to move to a position of controlling and silencing, and gain respite from the controlled and silenced position she had endured for so long as a child. Creating other opportunities for meaningful choices in her life was a key aspect of thinking about the exits to this procedure as well, as setting clear physical boundaries and giving staff permission to model challenge to touch which felt invasive.

A variant of the ‘Helper’s Dance List’ (Potter, 2013), a contextual psychotherapy file, specifically designed to help staff to talk through the issues, may help to create a climate in which staff attitudes to service user’s sexualities can be named.

Working Contextually with Sexual Offending

For one team, reciprocal roles around sexual identity were central to developing an understanding of a safe position (a responsibly scaffolded, self-regulated adult: ‘protecting to protected’) with a service user with a history of sexual harm to others. The conceptualisation of the reciprocal roles appeared to be strongly influenced by the nature of the person’s systemic setting. The multiagency secure environment reflected restricted, polarised reciprocal role patterns; typically predatory/ abusing to abused/vulnerable/ silenced and special/childlike/innocent to infantilising/unconditionally mothering/unknowing/indulging. Resulting splits within the support system manifested as inter and intra team position shifts dependent upon the external pressures around decisions and the emotional labour experienced. Emotional reactions of professionals included anger, relief, “paralysis”, disappointment, and anxiety exacerbated by the balancing act between the rights of the individual, least restrictive practice and public safety. The poles were “hidden” or “seen” by differing team members and agencies. The care planning and intervention responses of professionals were experienced at times as “too restrictive” or “unsafe” depending upon the reciprocal position. The challenge of conceptualising sexuality within the context of sexual harm patterns was evident.

Therapeutic input for the service user included group interventions around relationships, safe intimacy and sexuality and individual work to explore further gender, attitudes and attachments. Structured professional judgment tools around sexual risk were utilised to outline the differing positions of the team as well as multi-agency planning meetings arranged to bring into dialogue the differing “voices”, heard and unheard, orchestrating and holding the team through the mapping process.

People with Intellectual Disabilities as Parents

Any article on sexuality and intellectual disability needs to make mention of people with ID as parents, but is beyond the scope of the current overview to consider this in detail. In summary, the experiences of parents with ID are often that their rights are presented as being inevitably confl icted with the rights of their child (Booth & Booth, 1994; Joint Committee of Human Rights, 2007). Experiences of repeated removal of children are frequent (30-50%; Booth, Booth & McDonell, 2005). The absence of alternative sources of self-esteem and value such as employment and strong relational networks can accentuate a longing for a sense of belonging for people with ID. The identity of ‘mother’ or ‘father’ can create the promise of a socially valued and ‘normal life’. However, services behave as though they must either uphold the rights of child or the rights of adult, resulting often in children being removed and then for the parents often leading to repeated attempts to recover the loss of the previous child with the excitement and promise of a new birth.

Exits: Sexual Rights and Sexual Dialogue

What would healthy islands look like in relation to sexuality and disability? The legislation and a rights focus have the potential to open up a different ways of thinking about sexuality and people with Intellectual Disabilities (Keywood, 2003; Lesseliers, 1999; McCarthy & Cambridge, 1996). Negative stereotypes are so pernicious and pervasive that we have found it useful to try to hold in mind the potential for rights-based reciprocal roles which might look like;

‘Playful/curious/engaging/ exploring’ to ‘Making sense/ discovering/stimulated/ engaged’
‘Pleasuring’ to “Embodied/ Enjoying own body and physicality’
‘Loving/caring/sharing’ to ‘Belonging/cared for’
‘Respecting/acknowledging/ emancipating” to “Respected/ acknowledged/emancipated’

We hope that others may find these useful in relation to working with people with disabilities, and in relation to our own sexualities.

The limited body of relational research potentially re-enacts the “silence” and overlooked position associated with the concept of sexuality for individuals with a Intellectual Disability. It is essential to every individual’s sense of self and relational identity to have access to a range of personal relationships and be able to safely and creatively express their sexuality; however there is a lack of acknowledgement of sexual matters within therapeutic contexts but also within the ordinary lives of people with intellectual disabilities. The social and cultural historical narrative conceptualising Intellectual Disability itself severely restricts the formal and informal interpersonal opportunities and maturation processes enabling healthy experiences for individuals. Yet, the micro and macro systems of society can be shut off, neglectful or highly restrictive and controlling if there are manifestations of unhealthy patterns such as boundary violations, abuse or sexual harm as a result.

With the increasing acknowledgement of human rights and holistic approaches to supporting people with a disability to live rich and fulfilled lives, as families, carers and systems we have to challenge ourselves to work collaboratively with people with ID, bringing onto the map of relational well-being more intimate aspects of self identity. However if the whole system only perceives people with ID as ‘having sexual behaviour’ (a reductionist approach), it is impossible for the person to have healthy sexual relationships. Here, we may need to start with the system holding some relational imagination. There is an interface between the lack of privacy afforded to people with ID and reducing everything to behavior which, taken together, denies people with ID an internal world- both intrapersonal and interpersonal.

Ultimately, “if we are to celebrate the human condition and the autonomy of personhood, of which sexuality is a part, and recognise that in essence we are the same, then loneliness is a common disability – maybe the only disability.” (Caroline Dench, 2014 – Irish Times)

Acknowledgements

The authors would like to thank Julie Lloyd, Amanda Roberts and Steve Potter for helpful comments on and conversations about drafts of this article.

Moninne McCormack is a Trainee Clinical Psychologist on the University of Liverpool D.Clin. Training Programme who has just completed her placement with people with learning disabilities. Rebecca Swarbrick is a Clinical Psychologist and CAT Practitioner. Beth Greenhill is a Clinical Psychologist working with people with learning disabilities, CAT Practitioner and Clinical Tutor on the University of Liverpool Training D.Clin. Programme.

The authors are interested in how this article resonates with other people’s experiences and would be keen to hear from anyone who wanted to discuss a CAT approach to sexuality in general. We can be contacted via bethg@liv.ac.uk.

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Wood, H., 2003. Psychoanalytic Theories of Perversion Reformulated. Reformulation, Summer, pp.26-31.

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Bringing sexuality into dialogue using a CAT approach to the sexual rights and sexual relationships of people with Intellectual Difficulties

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