The Research Question

The focal point for the research topic evolved out of my practical experience as an agency services learning and development adviser and my reading of the research literature during the review process for this thesis. The interface between these practical and theoretical points of reference became the following research question:

What influences how support workers enable, regulate or constrain the sexual expression of the intellectually disabled people they support?

In posing this question I sought to provide an understanding of how current sexuality support processes are handled in New Zealand, what these processes contain and how they relate to the wider context in which intellectual disability, sexuality and support work is located.

Why the Support Position?

I wanted to explore the support position rather than concentrating on the position of intellectually disabled people themselves because, by definition, intellectually disabled people are recognised as a social group who require significant, lifelong assistance that can span all life-domain areas. In particular the support position and how it operates is critical to how successfully people in this group are able to form friendships and intimate relationships. Workers are the key to people being able to access and maintain a range of social experiences. Workers maintain and enhance skills through creating activities to enable people to develop social competencies (Mansell & Elliot, 2001). It is workers who carry out the management plans

developed on behalf of the individual they work with (Cambridge & Carnaby, 2005), and it is workers who decide the extent and substance of community access on a daily basis for those they support (Treese et al., 1999).

A number of recent initiatives in the disability field have enhanced opportunities for physically disabled people to find outlets for the development of sexual expression. These include the disability rights movement, disability-related work environments, support from other disabled people, “avant-garde artistic communities” (Shuttleworth,

2002, p. 116) and Internet communities such as chat rooms. While these environments have made access to sexual life far more possible for physically disabled people, they have only limited potential for access for intellectually disabled people without some form of assistance.

These comments sit alongside research papers that indicate that the difficulty intellectually disabled people have in this area results as much from their restricted social environments as from any cognitive impairment (Heyman & Huckle, 1995). Both insights indicate that support is absolutely crucial for intellectually disabled people to be able to develop and facilitate enduring friendships and satisfying intimate connections. This point has also been taken up by further researchers, who suggest that assistance for intellectually disabled people may need to include facilitating sexual activity, as well as sex education, counselling, and protection from exploitation (Hingsberger, 1997; Craft & Brown, 1994). Further it is noted that the typology of indicators of quality of life for members of this group be widened to include a more overt assessment of the factors that affect the relationship between those who are supported and those who support them (Felce, 1998). Finally, it has been suggested that these explorations need to cover the prevailing attitudes and beliefs support workers hold and the cultural composition of the supportive environments they work in (Williams & Nind, 1999). Thus examining the support position is to address the suggestions these researchers have made within a New Zealand context.

In choosing to explore this role, I was also influenced by contemporary

understandings about disability, recently come to be known as social model principles (Oliver, 1990; 2004). A focus on the term ‘disability’ as a descriptor of the negative relationships experienced by impaired people in relation to the economic and social spaces they inhabit is central to these understandings. Within this view, social processes rather than bodily impairments are foregrounded as the major source of disabling conditions. Exploring the support position rather than the position of the impaired person is a way of beginning to work within the parameters of this changed understanding.

Through this focus on positions rather than individuals, I had become interested in the research process itself, particularly the contribution of research findings to

pinpointing the difficulties workers face and how they could be ameliorated. Lennox, Taylor, Rey-Conde, Bain, Purdie & Boyle (2005) recently comment on a tradition within the service agency sector of holding unhelpful views of the research process and its recommendations. Human service agencies consider research as something conducted by outsiders who have little knowledge of what is ‘really going on’ within service organisations and whose negative evaluations could subsequently lead to involvement in litigation. These researchers suggest that such views may inhibit the role research recommendations play in initiating positive changes within agency provision and support practice. I was interested in finding out what it was about the research process that might create these views, what these influences contain and what could be done to lessen the impact of this vision of research within agency systems.

Why Sexuality Support?

As research studies show, any freedom intellectually disabled people might have to develop skills and expertise in the area of sexuality and intimacy remains “severely curtailed” (Hingsberger & Tough, 2002, p. 9). This compromises the capacity for intellectually disabled people to take their place within the community as “full citizens with rights” (Frawley, Johnson, Hilier & Harrison, 2004, p. 6). Within contemporary euro/western thought, individuals are encouraged to think of sexuality as something intrinsic, inner and concerned with deeply private emotional

investments. However, contemporary ideas increasingly link sexuality and sexual expression to notions of social identity and selfhood. Thus sexuality not only involves notions of private and personal desire but is also a marker of social status. In this view a claim to the right to sexual expression also includes a claim “for a full constitution of self” (Shuttleworth, 2002, p. 122). In euro/western culture, it is suggested, non- disabled adults take these steps towards selfhood themselves (Heyman & Huckle, 1995). However, the support needed aspect of intellectual disability ensures that many intellectually disabled people cannot access this pathway to selfhood on their own. While they remain in a sexual limbo they are unable to successfully activate the other

societal privileges adulthood confers. Addressing the issue of sexuality support is also to address this difficulty and what might be causing it.

Yet while I was concerned that a lack of freedom to access the sex act might place further limits on an already severely compromised group of people, the thought that members of this group might also lack entry to the range of emotional expressions that precede any positive sexual experience, e.g. tenderness, affection, warmth, friendship and love, also motivated this quest. As Heshusius (1982) remarks if freedom to pursue avenues towards sexual expression is repressed, a question mark can also be placed against how intellectually disabled people’s access to the entire range of sensual and affectionate experiences is handled.

However, at this stage I note other findings that signal the need for caution in relation to difficulties inherent in examining this support area. Such research requires

unravelling some very complex physical, social and emotional issues. The words sexuality and disability can evoke deeply held emotions, values and beliefs that vary in relation to a wide range of contexts. This degree of variation can polarise and inhibit open discussion of the topic (Stinson et al., 2002).