Like all people, persons with intellectual or developmental disabilities (IDDs) have inherent and natural sexual rights and needs. Those who provide care for and work with persons with IDDs must respect, affirm and defend these rights and needs.
Many in the public seem to prefer viewing persons with IDDs as an asexual “perpetual child,” however, with no need for a loving, fulfilling relationship with others. This shallow view denies individual rights to sexuality, which is an essential part of human health and well-being for all people. The culture of denial negatively affects people with IDDs in a variety of ways, including gender identity, emotional growth, body image and awareness, self-esteem, and social behavior.
Persons with IDDs frequently lack access to appropriate sex education in schools and elsewhere. At the same time, some individuals with IDDs engage in sexual activity for the wrong reasons – loneliness, poor options, manipulation or physical force – rather than as an expression of their sexuality. It can also lead to abuse, neglect and forced sterilization.
Sterilization for Persons with IDDs
Human Rights Watch, the international non-profit human rights organization, issued a briefing paper in November 2011 regarding forced and coerced sterilization of women and girls with disabilities. The briefing paper defines forced sterilization as occurring when a person is sterilized after refusing the procedure, without the individual’s knowledge or when the person has not had an opportunity to consent. Coerced sterilization occurs when misinformation, financial incentives, or intimidation compels the individual to undergo sterilization.
While a number of international human rights treaties and instruments protect an individual’s rights to bodily integrity and to make reproductive choices, forced sterilization is still widespread. The organization notes that women with disabilities are “particularly vulnerable to forced sterilizations performed under the auspices of legitimate medical care or the consent of others in their name.”
HRW says that forced sterilization of females with disabilities is performed for a number of reasons, including eugenics-based population control, management of menstrual cycles and personal care, and to prevent pregnancy – even pregnancy resulting from sexual abuse.
The Atlantic recently published a story about an Australian couple who had their 21-year-old daughter sterilized because they could not manage her periods. The piece brought up many cases of forced sterilization but many of the cases cited were for parental convenience regarding menstruation.
Sterilizing people with IDDs is reminiscent of eugenics, a 20th Century policy in the United States that led to the sterilization of more than 60,000 people by 1960. It is also evocative the infamous 1933 Nazi “Law for the Prevention of Offspring with Hereditary Diseases.” in 1933.
Most states in the U.S. repealed laws allowing for widespread sterilization of persons with disabilities and caregivers are now moving towards allowing people with IDDs to more freely express their sexuality and even have children. While the laws have changed, some parents and caretakers are cautious about the idea of sexuality and people with IDDs.
In one study, researchers compared the attitudes and behaviors of 30 mothers of young people with intellectual disabilities and 30 mothers of those without. Mothers in both groups placed similar importance on addressing developing sexuality in their children, and they were similarly confident that they could do so. Mothers of young people with intellectual disability were more cautious in their attitudes about their children’s readiness to learn about sex, contraception and intimate relationships.
The mothers of children with IDDs expressed concerns about their children’s sexual vulnerability. Additionally, these mothers had spoken with their children about fewer sexual topics and they began these conversations when their children were older.
The Sexual Rights of Persons with IDDs
The American Association on Intellectual and Developmental Disabilities and The Arc issued a joint position statement on the sexual rights of persons with IDDs. In that position statement, the two groups noted that every person has the right to exercise choices and express their full and honest nature, including their sexual expression and social relationships. Regardless of severity, the presence of an IDD does not justify loss of those rights.
All people have the right to develop friendships, and emotional and sexual relationships where they can love and be loved. They can begin and end relationships as they choose. All persons, regardless of disabilities, have the right to dignity, respect, privacy, confidentiality, and freedom of association.
In regards to sexuality, every person has the right to sexual expression and education that reflects their own moral, cultural and religious values and sense of social responsibility. Individualized sex education should provide information that encourages informed decision-making and should cover important issues, such as reproduction, abstinence, safe sexual practices, marriage and family life, sexual orientation, sexually transmitted diseases and sexual abuse.
As with all people, persons with IDDs have the right to protection from physical, sexual and emotional abuse and harassment. Those with IDDs and without have a common responsibility to consider the rights, values and feelings of others.
The joint AAIDD/Arc statement also discussed the rights of persons with IDDs to have and raise children. The statement suggests providing individualized education and information about having and raising children that reflects each person’s unique ability to comprehend. The education should help the individuals make their own decision about children with support as necessary, and to make their own decisions regarding birth control according to their religious or personal beliefs.
Furthermore, each person with IDDs should have control over their own bodies. The statement also says individuals should endure sterilization solely because of their intellectual or developmental disability.
The authors concluded their study by saying they hoped the findings would help provide information and support to help families deal with the sexual development of their children with IDD.
While this humane and compassionate approach allows those with IDDs to lead a fuller life, it can also increase their risk for abuse, sexually transmitted diseases and unplanned pregnancies. Caretakers and healthcare professionals must help those with IDDs safely navigate human sexuality.