Practice and professional issues for working with people with intellectual disability
‘To be a human being is to be a sexual being. Although there may be a range of intensity, varying over time, we all have sexual needs, feelings and drives, … sexuality is not an optional extra which we in our wisdom can choose to bestow or withhold according to whether or not some kind of intelligence test is passed’ (Craft 1987).
Facilitating ‘choice’ has been identified as a key role for carers and professionals who support people with an intellectual disability (ID). Putting ‘choice’ at the centre of person-centred care ensures people with ID are supported in making decisions about their lives, in small everyday matters and in more important issues such as with whom and where they live. However, when choices between facilitation of sexuality and protection of those with ID have been available, services and practitioners alike have sought to prioritise protection over choice. The result has been that too many people with ID have suffered needless anxiety and worry regarding their sexuality, owing to conventional attitudes and a lack of knowledge on their part or on the part of their caregiver (Katz, Shemesh and Bizman 2000).
Developing a ‘Social Model of Disability’
Historically, the sexual behaviour of people with ID has been forbidden or strictly controlled. Since the 1970s, however, philosophies such as normalisation, social and community integration, person-centred care and quality-of-life have significantly impacted on both practice and service provision. Today there is wide acceptance that people with ID have the same needs and desires in terms of their sexuality as everyone else in society. Although little is known in the Irish context, studies by Caffrey (1992), Evans et al. (2003) and Drummond (2005) demonstrate a growing awareness of the need for additional research in this sensitive area.
Greater inclusion for those with ID is also demanded by current Irish political and social policies. In April 2005, the National Disability Authority (NDA) launched ‘Disability and Sexual Orientation: A Discussion Paper’, with the intention of stimulating dialogue on disability and sexual orientation. These political and social changes challenge professionals and carers alike to acknowledge the expression of sexuality for people with ID—firstly, as a natural and important component of self-concept, and secondly in appreciating that emotional well-being and overall quality of life can be enhanced.
It must be accepted, however, that even when the starting point is an acknowledgement of these rights, a dilemma persists when rights are suspended because of level of ability (NAMHI 2003). Such rights-based approaches and the adoption of a ‘social model of disability’ that is universally supported, calls for us to adopt new ways of thinking and to develop new skills and practices.
‘Sexuality’ for people with ID has been defined through a multiplicity of factors as identified in table 1.0 below. What remains clear is that people with ID experience a range of difficulties and barriers in expressing and experiencing their sexuality positively. Sexuality in its broadest context is not just about sex in the physical sense, but rather it is concerned with trust, love, respect, relationships and friendships. A more fitting definition of sexuality is seen as: ‘the sum of a person’s inherited make-up, knowledge, experience, attitudes and behaviour as he or she relates to being a man or woman. It includes those ways of behaving which enrich the personality and enhance the relationship between people. It involves the ‘how you feel towards another person‘ and expression of that feeling as well as feelings about oneself – positive or negative’ (Llewellyn-Jones 1986, cited in Grigg 2001).
Identified barriers to positive experiences of sexuality
Obstacles identified by people with ID include their concerns being ignored or treated as problems; difficulties in leading active sexual lives; and, in some instances, being actively prevented from forming relationships. The mainly traditional attitudes of service providers and primary caregivers are also identified as presenting obstacles, which are further compounded by a lack of accurate information and knowledge. Many carers and professionals believe those with ID lack the ability to make informed decisions about their sexuality or about having more intimate sexual relationships (Ní Chualáin 2003). Worries concerning vulnerability to exploitation or ‘getting hurt’ must be accepted as real issues for those who support people with ID in this sensitive area. Even so, the loneliness and isolation experienced by people with ID are significant and self-reports that highlight a ‘lack of privacy’ and ‘intrusions on privacy’ by parents, family members and staff are noteworthy (Johnson et al.2000). It is clear that close friendships can enrich a person’s life and such relationships are also seen as an essential aspect of quality of life, yet there is little doubt that people with ID are disadvantaged in this regard. Despite such difficulties many people with ID aspire to marriage and having children, yet barriers to having positive experiences with regard to their sexuality appear to stem from those closest to them.
Current practice issues
Irish society clearly recognises the importance of what is considered ‘an ordinary life’ for people with ID. However, many adults with ID live very differently from their peers in society, in that they don’t live together as couples or with a family of their own. Instead they live under the supervision of their parents or staff , or sometimes with other people with ID that they have not chosen independently.
In addition, people with ID may face a double discrimination when making choices about their sexual identity. This is mainly due to presumptions of heterosexuality and the existence of homophobia and prejudice. The current prevailing Roman Catholic ethos further shapes Irish attitudes towards sexuality and homosexuality. This detail is important, given that the majority of Irish services are provided by religious congregations whose moral doctrine and philosophies heavily influence service and practice developments (Sheerin and Sines 1999).
Nonetheless, human sexuality for Irish people with ID must be managed within the context of family, in a way that is enriching to the individual’s developmental and religious perspectives. These views become more significant when as professionals and carers we explore the overarching concept of sexuality for people with ID. Regardless of having clear moral guidance and religious advice, the moral dilemma of wanting to protect people with ID from harm without discussing or educating them in relation to various aspects of sexuality cannot be avoided. The burning issue is to find a way to marry the prevailing Catholic ethos with an acknowledgment of the right of people with ID to a sexual identity.
Recommendations for developing best practice
Education, training and policy guidelines have been recognised as key factors in supporting carers and professionals in this difficult area. Education specifically designed to meet the needs of people with ID is also required and the current lack of culturally appropriate ongoing educational support in an Irish context remains an issue. Available sexuality education continues to have a biological focus and it could be argued that any educational programme that ends at the point of ‘good and bad touching’ is, by design inherently, disabling (Hamilton 2002).
Research has identified that people with ID can demonstrate challenging sexual behaviours, are vulnerable to abuse, and increasingly present with sexually transmitted infections including HIV and AIDS (McCarthy 2000). Similarly, Levy and Packman (2004) identify that people with ID are particularly vulnerable to sexual abuse owing to a number of factors. They cite life-long dependence on other adults for care, trained compliance, social isolation, lack of education about sexuality and a societal view that devalues people with disabilities. The provision of training and education programmes which promote positive learning opportunities must become a priority; indeed, professional responsibility and a clear duty of care demand such a response. In developing an evidence-based approach to our practice we can begin to address this sensitive area of care, while meeting the sexual health needs of this vulnerable group.
There is a growing awareness that people with ID, particularly those in the mild and moderate range of disability, are capable of assuming independent or semi-independent functioning in many aspects of their daily life. The right to make decisions is supported, even when some may be considered by others to be inappropriate or wrong. The lack of provision of appropriate education raises the question whether the Irish system of service provision is designed to recognise the sexual or reproductive rights or needs of the 24,917 people with ID in Ireland, particularly as 75% of these are in the mild and moderate sectors (Barron and Mulvany 2005).
The development of appropriate frameworks on which to build a best-practice approach to the concept of sexuality can only be accomplished by additional research in the area. Current approaches/practices to sexuality for people with ID are sustained by a lack of clear policy and service guidelines. Whilst overall opinions have become more open, considerable barriers remain. In effect people with ID remain socially excluded from wider society in that they are powerless to access their full rights with respect to intimate personal relationships and sexuality education. The predicament is whether we as carers and professionals have the right to impose our moral standards on others—for in denying a person’s sexuality we are in essence ‘closing our eyes’ to their personhood.
Sean Ryan, a 47-year-old Irishman with an ID, sums up the current status quo: ‘It’s impossible for people with intellectual disability to have a girlfriend or boyfriend. Every moment is watched and there’s no normality…. But I’d say let them hold hands and have a cuddle …. I believe people with ID die young because they haven’t got their needs fulfilled, I feel something should be done for people’ (O’Callaghan 2003).
She has the mind of a child, but no one told you that one day, your learning disabled daughter would have the body of an adult and all that goes with it: the burgeoning sexuality, crushes on boys, fancying every man in sight.
Quoted extract from a mother of a 30-year-old daughter with a moderate intellectual disability. Irish Examiner, October, 2003)