Given how expansive this topic is, this blog will focus specifically on intellectual disabilities (ID). Please see the blog prior to this one to read more about physical disabilities. Here, we’re aiming to cover some of the challenges people with ID face when it comes to their sexuality, including but not limited to, social perceptions, stereotypes, lack of education, and consent. We’re delving into this topic to amplify the conversation that is still so sorely missing from the mainstream: the prioritizing of sexual wellness of people with disabilities.
The Nature of Sex
Sexuality is a fundamental part of human nature. So, it shouldn’t be surprising that people with ID experience the same range of sexual thoughts, attitudes, feelings, desires, fantasies as anyone else. Sexual exploration is a normal, universal, and healthy part of early childhood development and in order to understand and enjoy sexuality, everyone needs adequate information and support from a young age. Most people with intellectual disability can have fulfilling personal relationships. However, some may need additional support to develop relationships, explore and express their sexuality, and access sexual health information and services.
Let’s Talk Consent
It only makes sense to start the conversation with the topic of consent. While consent is something we’re grappling with as a society at large (consider #metoo and #believeher), when it comes to people with ID, it can seem even more fraught. But it’s crucial to remember that an intellectual disability does not automatically mean that a person lacks the capacity to consent to sexual activity. After all, the presumption that a person with ID who engages in sexual activity is a victim would undermine the sexual rights of people with ID.
Sexual consent capacity is the ability to voluntarily make a reasoned decision whether or not to engage in sexual activities and needs to be understood in context because capacity refers to the ability to make a particular decision at a particular time. This means that capacity needs to be weighed on a case-by-case basis, rather than seen as an overall or final judgment. Some of the things to consider when assessing capacity would include: does the individual have access to knowledge or sexual education, does the individual exhibit autonomy, do they display a reasoned understanding (can weigh risks and benefits), and ethical considerations. As such, it’s worth noting that the capacity to consent to sexual activity might also change over time with access to things like sex education as this could enhance the ability of someone with ID to make informed choices, appropriately express their sexuality, and recognize and report abuse.
Best said by the Pennsylvania Coalition against Rape “In short, there must be an individualized determination of whether a person with ID has the capacity to consent to sexual activity. While people with ID should never be presumed incapable of making such decisions, they must be protected against sexual abuse when they cannot make such decisions.”
The Threat of Sexual Violence
According to data run for NPR by the Justice Department, people with ID (both men and women) experience sexual abuse at rates more than seven times those for people without disabilities. Notably, this statistic is almost certainly an underestimate since it only covers household surveys and doesn’t include people living in institutions and group homes. Still, it’s one of the highest rates of sexual assault of any group in America and it’s hardly talked about at all. Some of the reasons for this include:
- inadequate sexuality education on where and when it is acceptable to be touched by other people
- inability to resist, protest against, or stop abusive behavior from happening
- not knowing that a person has the right to decide what happens to their body, especially if they are used to other people constantly attending to their physical needs
- Predators target people with intellectual disabilities because they know they are seen as easy to manipulate and will have difficulty testifying later
- being raised in situations where they are used to being told what to do (taught compliance) and therefore going along with requests or demands made by an abuser
Just as in the wider population, assaults against people with disability are more likely to be perpetrated by somebody they know, such as a family member, carer, work colleague, or someone they live with. Research also shows that sexual assaults on people with disability are less likely to be reported. When it comes to the sexual abuse of children with ID, there is also the view that they won’t understand what happened to them and “therefore won’t be damaged by it” influencing the extent to which disabled children are listened to and believed when attempting to disclose. This is further illustrated by a 2013 court case from Los Angeles County where a psychologist shockingly testified that it was “very possible” that the 9-year-old plaintiff (who was sexually assaulted 5 times by an older boy at her school) had a “protective factor” against emotional trauma because of her low IQ.
Sex and Love in the Movies
Even in popular culture—film, TV sitcoms, and novels—disabled people are rarely portrayed and when they are, it’s usually not as romantically attractive or sexually active. The negative messages relating to disabled people as sexual beings in popular culture inevitably shape both public perception and disabled people’s own understandings of their potential to be sexual beings and engage in romantic relationships. Not only are these sexual representations of disabled people absent in the cultural scripts disabled children are exposed to growing up but in addition, sexual knowledge does not feature in their formal and informal education. The exclusion of disabled youth from certain social spaces impacts their exposure to sexual information and sexual opportunities during this crucial period of development.
Social opportunities and intellectual disability
Some more reasons why people with intellectual disabilities may have fewer opportunities to form social and sexual relationships include:
- a lack of privacy
- being dependent on others for daily living
- a lack of confidence about their ability
- less knowledge of how to negotiate relationships and express their sexuality
- a limited social circle and a lack of social experience
- physical or cognitive limitations
- carers who wrongly think of them as childlike or asexual
- carers who view their sexuality as something to be feared and controlled.
A person with an intellectual disability may need additional support to explore sexuality and relationships. This can be particularly relevant to people with high support needs, for example, those who live with their parents or in supported housing, or those who need help with communication or personal care. People in these situations may want sexual relationships, but wrongly, this may not be permitted by their parents or carers.
The Right to Know (Sex Education and Wellbeing)
A lot of issues around consent or disclosure around abuse stem from a lack of education or sexual health tools that are an essential part of sexual socialization. Organizations like Project SHINE (Sexual Health Innovation Network for Equitable Education for Youth with Intellectual Disabilities) are tackling this head-on. The community-based org aims to provide equitable access to information as well as offers affordable health care that promotes sexual wellbeing throughout the lifespan of program participants. It also aims to conduct research to identify ongoing gaps in the sex-ed and disability fields to develop new tools and curriculum for youth with ID. According to SHINE, through comprehensive sexual health education, people with ID “develop the skills needed for sound decision-making, consensual sexual expression, and successfully navigating relationships.” Of course, SHINE is just one wonderful example of what is widely needed throughout society.
A Basic Human Right
Society has long presumed that people with ID were asexual and had no need for or interest in sexual relationships with others and had no capacity for sexual expression and exchange. Their sexuality was either outright denied or rigidly controlled and people with ID were kept away from society and often institutionalized.
Today, most people with ID live their entire lives in the community. They are integrated into schools, workplaces, recreational activities, and other activities. As society has evolved, we also have come to recognize that adults with ID should be able to make decisions to the greatest extent of their abilities. Freedom to make decisions is a core human right, fundamental to personal autonomy and self-determination. Decisions about sexuality and relationships are no different for people with ID. These decisions can be central to the human experience. Individuals with ID have a fundamental right to sexual expression.