Sarah Frankenburg
Twenty years ago we wouldn’t have had a say. We would be sitting in wee corners in asylums with people making decisions for us, that wasn’t right. We have come a long way and all I am going to say is that our voices aren’t going to go quietly into the dark anymore.
21 year old man
Family Planning Association
The provision of sex and relationships education (‘SRE’) for adults and young people with learning disabilities is a sensitive but vital resource. People with learning disabilities are no less capable and desirous of intimate social relationships as their non-disabled peers and are just as likely to experience the many and varied sexual and social desires experienced by anybody else. Despite this, sex and relationship education for people with learning disabilities is often considered a difficult, even taboo subject. People with learning disabilities have long been calling for adequate and accessible sex education and services are only just starting to respond to this need. In recent years this situation has started to improve - particularly for young people now passing through mainstream and supported education. There is still a long way to go, however, before all people with learning disabilities are provided with supportive and accessible sex and relationships education which covers the emotional and social, not just the practical and physiological aspects of intimacy. This is fundamental not only in reducing vulnerability to coercive or abusive situations but also in supporting people to express and explore their own sexuality, if they so choose.
The call for broad and compassionate sex and relationship education has come most clearly from people with learning disabilities themselves. Since the mid nineties numerous campaigns and movements such as the now famous ‘The Big Sex Show’ have declared the sexuality of people with learning disabilities, their right to explore it and their entitlement to support in doing so. Recent initiatives such as the Family Planning Association’s ‘It’s My Right!’ campaign have further thrown the need for considered and thorough sex and relationship education for people with learning disabilities into the public eye. However, there is still a long way to go. Impressive research by the charity CHANGE found that many people with learning disabilities still feel they have to fight for sex and relationships education and sexual health support, and still more for such resources to be delivered in a manner appropriate to their experience and learning needs.
Historically, it has often been argued that sex and relationship education for people with learning disabilities is either inappropriate or unnecessary. The delicate balance between protection and empowerment has led to the majority of people with learning disabilities receiving an education focussed on risk avoidance and not on the emotional aspects of sexuality or social intimacy. The observation that people with learning disabilities are more likely than the general population to become victims of sexual abuse, alongside high profile cases of exploitation in institutional settings, has informed an argument for shielding people from sexuality. This in turn has encouraged a ‘need to know’ – and largely defensive - approach to sex education.
As the rights and capabilities of people with learning disabilities have become better recognised, and social care has moved away from institutional settings, these concerns have given way to worries about more subtle - but no less pernicious - forms of coercion and mistreatment. These focus on the manipulation and coercion of vulnerable people within the community, so called ‘mate-crime’ and wilful, often prolonged, deception and exploitation. For many, these concerns continue to inform an argument for largely defensive education.
However, this deprivation of education can lead some to take risks, not knowledgeable of the dangers or alternative means of expressing their sexuality. Without accessible support, others are left to experience troubling or inappropriate sexual relationships, and still others are confined to an experience entirely without physical and emotional intimacy of the kind they might long for, or to feeling uncomfortable with their own bodies, emotions and desires. Difficult issues of consent and exploitation often arise most readily from a lack of information and, more fundamentally, lack of conviction that sexuality is yours to own; to decide when, how or if you express it, and to nurture it as you choose. Disquieting research by Fitzgerald and Withers (2011), among others, has found for example that many women with learning disabilities feel that mutual and compassionate sex and intimate relationships are something to which they are not entitled, which has a notable and distressing impact on their social, sexual and emotional experience.
Broadening the definition of what people ‘need to know’ to include emotional, social and psychological aspects of sexuality, including pleasure, therefore has an important protective and empowering role. This has been a central tenet of the call from people with learning disabilities for appropriate educational support. In 2006, FPA and the communication needs charity Sense Scotland examined the sex education and support needs of people with learning disabilities with a view to creating a best practice resource pack for practitioners. The study concluded that in light of the damaging consequences of a lack of information we are forced to ask ourselves the ‘really awkward question: “how dare we not support this learning?”’
Sex and relationship education is not only about threat avoidance. Central to the demands from those with learning disabilities is information and support in safely exploring the emotional, social and physical benefits and pleasure of intimate relationships. The argument that sex and relationship education is unnecessary for people with learning disabilities does not stand up to scrutiny. The simple observation that people with learning disabilities form secure and intimate relationships and families of their own stands in defiance of the reluctance of services and research to engage with their sexuality.
Awareness of the need for sex education and sexual health support for people with learning disabilities has begun to progress. However, many people still feel they are fighting for the support they need to explore a fundamental part of their lives. Creative and accessible means of informing people of their rights and choices, and of supporting people to pursue them, are still necessary. A compassionate, accessible and emotionally engaged programme of sex and relationships education arms people against potential mistreatment while equipping them to explore and fulfil their own sexuality and social relationships. Those with learning disabilities – as with anybody else – therefore need access to broad and sympathetic sex and relationships education which takes into account the many shades of human sexuality and supports people in cultivating their own fulfilling and compassionate relationships, if they so choose.
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