The urologist looked startled. Silence vacillated in the consulting room for a few torturing minutes. My client, a man in his thirties who has a diagnosis of cerebral palsy and mild intellectual disability, was watching us trying to hide his anxious anticipation behind his smile. I had just asked the urologist to review a sexual aid that my client could use without the risk of displacing his catheter. This was not the first time that I encountered such a surprised and frozen attitude when trying to discuss the sexual issues of my client group.
Just putting the words “sex” and “intellectual disability” in the same sentence evokes a taboo rooted in the archaic belief that disability is the product of “unnatural” sex. As physical strength and beauty have always been the principles in the sexual domain, the disabled are denied their sexuality under the label of the “God’s chosen people”.
Religion, politics and economy have historically contributed different notions about disability as well as sexuality. Disability has been associated with God, Devil, “bad, sinful sex”, sickness, madness and destitution, contributing a number of myths about the sexuality of people with intellectual disabilities. These myths are encapsulated in the polarised views according to which people with intellectual disabilities are viewed either as sexual deviants, possessing a dangerous raw and untamed sexuality or as innocent asexual and eternal children (Kempton & Khan, 1991).
Historically, as O’Brien (1981) stated, there have been three most harmful attitudes towards people with intellectual disabilities which contribute to their devaluation and render them off their sexuality. These refer to dehumanisation (treating people with intellectual disabilities as if they were less fully human), the lack of age appropriateness (treating them as if they are and will always be children) and the isolation (segregating people away from valued communities/ social opportunities).
It is almost three decades since the application of the “Normalisation principles”( 1990s)in the UK and despite the more recent White Papers “Valuing People”(2001) and “Valuing People Now” (2008) which promote the human right of people with intellectual disabilities to develop intimate relationships and express their sexuality, this is still a controversial field for not only the public but also for the professionals, the families of people with intellectual disabilities as well as for people with intellectual disabilities themselves.
The field of sexuality and intellectual disability has inherited this historical polarisation and paradox where sex ceases to be a private affair and becomes a concern about risk, capacity and safeguarding. It is often the case that the same legislation that is developed to safeguard and promote people’s sexual rights in practice it becomes a barrier to people’s sexual expression. My experience of the application of The Mental Health Act (2005) is that many a time it has been used by professionals incorrectly. A misinterpretation of the Act may lead to raising the standards of the capacity assessments to such a high standard that any other person without disabilities could have also failed.
Having run a Psychosexual service for people with intellectual disabilities since 1997, I am still bewildered by the fact that most of the referrals I receive concern cases of sexual abuse, sexual offending, or some kind of “problematic sexuality” that I am called to “sort out” or “stop”. Very rarely referrals request to address the sexual awareness and sexual exploration of people with disabilities.
“Don’t put ideas in their minds”, will be like “opening Pandora’s Box” is what I am often told by parents and sometimes by other professionals. As if the sexuality of people with intellectual disabilities does not belong to them but is a foreign idea belonging only to the non- disabled; an idea that if ever people with disabilities came across could only lead to disastrous consequences.
Yet sexuality is an integral part of human development, interlinked with the physical, emotional, psychological and social growth of a person. It does not refer merely to sexual performance but includes the person’s psycho-social adjustment and maturation. Sex and sexual exploration may be a vehicle to self-actualisation, to reclaim power and control and to establish a position in the societal net.
People with intellectual disabilities may experience the same sexual and relational difficulties as anybody else. However, on top of these difficulties they have to face the physical, intellectual and social restrictions due to their condition as well as the shame that the long history of negative myths and attitudes has imprinted in them.
Some of the recurrent themes presented in the Psychosexual Service for people with intellectual disabilities confirm that sex has a unique significance in their lives:
- Sex as a way of fighting death and the fear of annihilation. The clinical work of both Valerie Sinason and J. De Groef highlight how the society’s unconscious murderous wishes towards people with intellectual disabilities are communicated to them in many subtle ways. Sex or “Eros” becomes the antidote to Death or “Thanatos”. Sex expands beyond the gratification of corporeal needs and the physical and emotional union of two people and becomes the means for fighting for their own existence.
- Sex as the way to defy the sense of being “different” and to be viewed as anybody else. Significant others and the society are focusing on the “difference” instead of “sameness”. Consequently, people with intellectual disabilities experience themselves as “different” causing them low self-esteem, shame, “damaged” identity and lack of assertiveness. Many of my clients view sex and especially sex with a person with no disabilities as the ultimate proof of “sameness” and belonging. At times this attitude towards sex comes at a cost as it renders them vulnerable to abuse and exploitation.
- Sex as the way of taking part in the “normative” process of life. People with intellectual disabilities do not exist in a vacuum. They come from different cultural and religious backgrounds and they wish to follow what is viewed as a “normal life”. To many this means to study, have a job, make friendships and sexual relationships, get married and have children. Yet for disabled people all these life transitions and decisions get scrutinised and controlled by their family and different professionals. What seems to be a straightforward decision for most, such as dating, in the case of disabled people it involves a number of assessments (capacity, risk assessments) and the work and input of a number of professionals. In the end, what is supposed to be a private matter becomes the subject of a number of discussions and the decision making is in the hands of others.
The complexity of the psychosexual work with this client group goes beyond the “I-Thou” therapeutic relationship. It involves the acknowledgment of a systemic attitude towards the sexuality of people with intellectual disabilities which is cascaded from society, and the government (the Legal, Social and National Health systems) to the different organisations and professional groups, to the families and carers and to the disabled people themselves. In a cunning parallel process, the psychosexual work with people with intellectual disabilities is impacted by the same myths, ambivalence and paradox associated with the sexuality of this client group.
Reflective Group Leader & Lecturer LDPRT