“Sometimes when people meet me for the first time they treat me like a child or else look and talk to my mates instead, rather than to me”, a young woman told me, as we were discussing how she feels as a woman, beyond being just a person with intellectual disability. Her statements confirmed that men and women with intellectual disability have to fight and overcome barriers imposed by society in every area of their sexual lives. Their sexual options are often restricted by the prejudices and anxieties of carers, staff or the general public, as society tends to judge sexual behaviour by people with intellectual disability in a different manner to how someone without a disability would be judged.
In the past, any signs of sexual interest or arousal by people with intellectual disability were either overlooked or repressed as stereotypically the latter’s sexuality revolved around extremes of asexuality to hyper sexuality. Nowadays there is an increased awareness that people with intellectual disability want and need friendships and relationships, but developing such rapports depends on the opportunity one has to meet people while developing skills to sustain these connections. Friendships may vary from the intimate friend with whom to share private and intimate experiences, to the social friends who are there for company and sociability. Community life as opposed to institutionalisation has indeed given people with intellectual disability the opportunity to develop and maintain friendships, leading to a richer quality of life. Yet they still tend to experience greater isolation and loneliness than non-disabled people, even when they live in the community.
Reasons for this isolation are various, ranging from not having anyone to identify with and being excluded from social settings, to attitudinal and accessibility barriers. Otherwise, people who have adults to support them all the time find it difficult to infiltrate social groups as they are always accompanied by someone else. The lack of opportunities for people with intellectual disability to form part of society was reported as being the main barrier to quality of life in local research in which people with intellectual disability, their parents and service providers participated. Parents validated this reality, by confirming that their children had very few friends and their lives revolved around their family and paid carers. This isolation resulted in limited opportunities to socialize, therefore to meet people, form friendships and develop relationships. A parent claimed: “What opportunity does she have to find someone if she is here (at home) all the time?”
It is also known that family and carers in the life of people with intellectual disability may tend to be overprotective to the extent that they prevent them from having friendships or relationships. Yet sexuality is not an optional extra which non-disabled people can marginalize according to whether the cognitive criteria of those concerned are satisfactory. Moreover, sexuality and sexual expression are not issues that can be allowed or suppressed according to how comfortable those in a position of authority feel about them.
A lack of adequate sex education, across educational setting, services, day and residential centres, was another issue revealed by the findings of the above-mentioned research. Yet all stakeholders acknowledge the necessity of such education as the basis of the formation of the sexuality of people with intellectual disability. The need to educate parents and personnel employed to support people with intellectual disability is also recognised. At a national level, suitable policies that are specific to people with intellectual disability, such as sexuality policies, vulnerability and abuse policies and sex and relationship policies are also still missing in the national framework.
The following series of proposals highlight the key changes required for people with intellectual disability in Malta to achieve a better quality of life. Above all, they aim at bringing a change of attitude towards people with intellectual disability and their sexuality.
Platforms for social opportunities
Social isolation is experienced by people with intellectual disability, starting at school age and culminating in their late teenage and adult years. Community projects that provide inclusive leisure activities involving people with intellectual disability consequently need to be developed. While such a project would need local or government funding support, parental involvement in acquiring premises, resources and planning activities would be a useful contribution. Yet parental involvement in the leisure activities themselves is not suggested. Such projects have the potential to attract up to hundreds of Maltese young people with intellectual disability, as have other projects and organisations such as LANDS (Living Ability Not Disability), GFN (Ghaqda Flimkien Naslu) and Special Olympics. To avoid further segregation, the project would need to involve non-disabled young people and reach out to those isolated in their own communities.
Independent living opportunities
Although continuous emphasis is placed on social role valorisation and promotion of quality of life, people with intellectual disability are still denied the right to take decisions and make choices in several areas of their lives. Independent living is one of these areas. Living outside the parents’ house either out of necessity or out of choice is still problematic for people with intellectual disability in Malta due to the lack of available resources. The establishment of small community houses and the conversion of big institutions into smaller residential accommodation has been slowly taking place, but does not cover the diversity of requirements. Working towards independent living is therefore a future goal for the Maltese authorities and service providers. Such strategies would contribute to the implementation of the United Nations Convention on the Rights of Disabled People, particularly Article 19.
Article 19: Living independently and being included in the community
People with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.
When discussing independent living possibilities with a group of self-advocates, a young female participant with intellectual disability commented: “I’d like to find a flat … not live with my mother.”
And a male participant added: “In Malta these kind of houses do not exist… to me the mentality in Malta about these things is zero.”
It might be important to underline that moving out of the family home does not mean a person will be living independently; people with intellectual disability need to be supported in a way that promotes their autonomy and exercises their choices. A parent of a young woman with intellectual disability affirmed that “…there aren’t many people with disability in a relationship and I think there aren’t many because of these things; like the lack of facilities, because if there was for instance adequate accommodation there would be more chance for these things to happen”.
Sexual equality
Sexuality needs to be addressed more openly and seen in a more positive light especially when it is associated with people with intellectual disability. In parallel, images of asexuality and heterosexuality need to be revised as people with intellectual disability also experience diverse sexualities as does the wider population. The start is to accept that people with intellectual disability are sexual beings, and that parents of people with intellectual disability need to be supported towards a more positive understanding of sexuality. A balance therefore needs to be found between protecting people who are vulnerable while giving them the right to establish and explore their sexuality. Thus education that belies their right to information in order to make informed choices is required. The United Nations Convention on the Rights of Disabled People, Article 23 declares:
Respect for home and family –States Parties shall take effective and appropriate measures to eliminate discrimination against people with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others.
Children with intellectual disability, like other children, need both structured teaching and informal support to learn that their bodies can be sources of interest and pleasure and about appropriate and inappropriate social and sexual behaviours. Sex education for people with intellectual disability needs to start at an early age and target social, emotional and biological aspects among others. In order to be effective, it should be an ongoing developmental process, not a single intervention. Ideally, sex education is delivered according to the level of ability of the person with intellectual disability, and adequate resources are used by motivated and supported educators.
Parents indispensably contribute to educating their children in the area of sexuality and require support and liaison with other entities to deliver this kind of education. It is also evident that services need to ensure that staff training and required support is provided for responding to the sexual expression of people with intellectual disability. Training targeting issues of sexuality, sex education and rights of people with intellectual disability are crucial, thus rendering sexuality no longer a taboo, but a normal area of development and part of a person’s life.
Specific policies that promote equality and recognise diversity are also required to support people with intellectual disability to express their sexuality in appropriate and safe ways. Policies related to the various aspects of the sexuality of people with intellectual disability need to be embraced by organisations and services. Making such policies accessible to service users themselves in innovative ways is above all an enabling practice.
In conclusion, the experience and expression of sexuality of people with intellectual disability will remain censored till sexuality is recognised as an integral part of their lives. Therefore the debate on sexuality and intellectual disability needs to be politicised as have other issues such as accessibility and approached with the same passion as other human rights issues.