People with intellectual disability have a right to sexuality – but their families have concerns

Many South Africans living with intellectual disability don’t have opportunities to be part of community life. They may lack the opportunity to learn, work or enjoy leisure activities and social connections like anyone else.

There are various reasons for this. Inadequate health and social services, stigma and poor understanding of intellectual disability in society are some of them. One reason that researchers haven’t explored much relates to family members’ legitimate fears of the risk that their relatives will be sexually abused.

There are common misconceptions about and negative attitudes towards the sexuality of people with intellectual disability. They are also easy targets for sexual crime perpetrators who take advantage of their diminished ability to understand or judge other people’s intentions. They are often eager to please others and face communication challenges which make it difficult to report if anything happened to them.

Data on sexual violence against people with intellectual disabilities in South Africa is scanty. But the available literature suggests that this group is at high risk.

Intellectual disability affects a person’s mental abilities including reasoning, problem solving, abstract thinking, judgement and academic learning. These challenges affect a person’s ability to be independent. The 2016 Community Survey in South Africa placed intellectual disability in a category relating to difficulties with remembering or concentration. It reported an estimate of 3.3% of the population as having mild difficulty and 1% as having severe difficulty.

Despite their limitations, people with intellectual disability are entitled to their human rights like everyone else. These include the right to sexual autonomy and sexuality education. But sexuality education and support are not usually available to this population group.

With this lack of support, many family caregivers – especially parents – live with a fear that their child or relative lacks competency. There’s concern that they may be at risk of sexual abuse, or might display inappropriate sexual behaviour. A common response is for caregivers to become overprotective. As a result, the person with intellectual disability is kept under surveillance.

In my research in the Western Cape province of South Africa I found that some people with intellectual disability were being “detained” at home. They were denied opportunities for education and training, employment, leisure, and other forms of social life. The main reasons related to sexuality.

Study findings

I interviewed 25 family caregivers about sexuality issues concerning their relative with intellectual disability. I also interviewed nine service providers about their views of families’ responses.

Family caregivers expressed a range of actions, attitudes and behaviours – from suppression of their relative’s sexuality to support. Responses shifted between the two extremes, depending on availability of professional support and the specific sexuality issue.

In the responses that tended towards suppression of sexuality, one of the main reasons was fear.

When a child reaches puberty and then adulthood, families face the reality of that person’s sexual maturation. Some families would prefer not to think about this at all. Physical body changes, menstruation, masturbation, interest in sexual intimacy, evidence of sexual activity, desire to become a parent and need for independence can be difficult for families to handle. The person with intellectual disability needs support, for example, in the form of sexuality education and empowerment. Family caregivers need emotional and practical support. These are not always available.

Even when the person with intellectual disability has access to some services such as sheltered workshops, it’s common for there to be a lack of collaboration between service providers and families. This leaves all the responsibility with the families.

Due to the lack of support and their fear, caregivers become reluctant “jailers” of family members with intellectual disability. But lack of stimulation and exposure to the outside world for the person with intellectual disability has negative implications. It can make a person lonely, unable to learn how to do things, and prone to mental and physical health challenges.

There are some organisations working with people with intellectual disability in South Africa that take the right to sexual autonomy seriously. They offer appropriate support in promoting this right. These organisations have to manage family caregivers’ anxieties. Families sometimes threaten to withdraw their relative from the services to thwart sexual behaviour.

Implications

Detaining and protectively watching over people with intellectual disability has implications for the whole family.

The role of “watcher” can affect caregivers’ own independence, flexibility, productivity and well-being. This reinforces the connection between poverty and disability.

Service providers and policy makers should promote family centred support services for people with intellectual disability and caregivers. A big part of these efforts should be sexuality education to help people make autonomous, safe choices.

Security is a concern among families, especially those living in high-risk areas. The safety of people with intellectual disability must be prioritised. Where they have been victims of crime, justice must be done.

It takes collaboration to promote social inclusion. A comprehensive approach is useful. It should consider the need for support at the levels of the individual, family, work, school and community. And it goes further, to cultural institutions, social structures, policies and the broader cultural context.