Impact Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities

It is now over a decade since Professor T. Robert Ames (deceased) and I wrote a scathing editorial in the AAIDD newsletter blasting the field for not effectively dealing with the sexual needs of people with intellectual and developmental disabilities (ID/DD). We wrote:

…there remains, for the vast majority of people with ID/DD, a major area of deprivation and inequality, a lack of opportunity, choice, and the inherent right to develop and participate in social relationships which may involve sexual expression. The barrier lies not in the inability to develop responsible social and sexual behaviors, but in the misapprehensions and collective negative attitudes of some administrators, professionals, family members and the uninformed general public. They continue to support outdated laws and public and agency policies which deny people with ID/DD the opportunity to develop the requisite responsible social and sexual skills and behavior, to exercise choice, and to have the opportunity for meeting and relating. The issue is over-control and a denial of basic human rights. It is fundamentally abusive in its effect. The cumulative result of such repressive and arbitrary attitudes and policies is human suffering and degeneration. Most people with ID/DD have either had to give up any hope of social/sexual fulfillment or, when possible, to surreptitiously seek partners and moments of gratification in dangerous, unlawful and degrading situations. (Ames & Samowitz, 1999)

What has changed in the decade since we wrote that article? Recently I was at a meeting with a number of psychologists and other staff members from a state system who said that they did not want the mentioning of sexual issues in a curriculum that will support people with ID/DD. They didn't want "to open that can of worms." When I asked why, they just laughed and said it was better not to go in that direction. Yet people with ID/DD have sexual needs that if not fulfilled have resulted in unhappiness and sometimes aberrant behaviors.

At YAI/National Institute for People with Disabilities we have always believed that sexuality is a normal part of a person's personality, and that people with ID/DD have the same needs that all people have. There is an important concern about their ability to be able to provide informed consent when being involved in a sexual relationship, and that issue needs to be addressed in a professional, respectful manner. As Professor Ames and myself also wrote:

We all acknowledge that people with ID/DD, for the most part, require varying degrees of supports in many aspects of their lives, including some degree of protection from harm, abuse, and exploitation. They are certainly often in need of these supports and protection in social/sexual relationships and situations. This does not mean that they cannot make reasonable choices from an array of viable options, give consent to partake in responsible social/sexual behaviors with another consenting person and form fulfilling relationships.

Agencies Need a Social/Sexual Policy

In order for an agency that serves people with ID/DD to provide the necessary supports for the social and sexual dimensions of life, there needs to be a written social/sexual policy that clearly states the agency's philosophy and how it is specifically going to be implemented by staff. Without a written policy, each staff member could theoretically impose his or her values on people with ID/DD. Imagine the confusion for a person with ID/DD if confronted with numerous opposing views from staff. We would never tolerate this if the issue was a behavioral intervention. Careful plans are written so there is consistent treatment. Yet the issue of sexuality is often avoided, which allows staff to fill the vacuum with their own values and prejudices.

A sexuality policy needs to start with a philosophy. Our stated philosophy at YAI is the following (YAI, 2004):

Sexuality is a basic biogenic need and integral to the total way in which an individual relates to his or her world as a male or female. It includes not just sexual activity, but also the acknowledgement of feelings, ways of relating to self and others, self-esteem, gender identification, and sexual orientation. Individuals with ID/DD share the need to love and be loved, and as consenting adults to establish relationships with person of their choice and to express their sexuality so long as they are not injuring themselves or others. Staff needs to be trained to help consumers develop healthy and functional expressions of their sexuality.

We also add, "To ensure that this happens, the agency will value the voice, and advocate for the rights, of people with ID/DD." We always respect individuality, which includes culture, spirituality, gender/gender identity, and sexuality (self-image, self-esteem, relationships, choice-making, sexual orientation), and we affirm that "Every individual has the right to be supported to develop loving and safe friendships and relationships."

Beyond our philosophy, in our policy there are 11 specific social/sexual areas that are addressed. In the remainder of this article six of them will be discussed briefly: choices and consent, friendships and relationships, education and information, sexual expression, reproduction and contraception, and sexual behaviors (YAI, 2004).

Choices and Consent

It is written in the YAI policy that:

Adults with developmental disabilities have the right to make their own decisions about relationships. A person with a developmental disability has the right to engage in sexual activity with another person providing he/she is capable of providing informed sexual consent.

The issue of consent is very important. Without the ability to consent, even if a person is a willing partner, sexual activity is illegal. For the vast majority of typically-developing people, consent becomes automatic at an age specified by the state in which they reside or where they are having sexual contact unless they are in a comatose or other mind-altering state. For people who have ID/DD, there is no clear demarcation in determining their ability to consent. It is based on their individual capacity to understand the ramifications of their actions. At YAI, we have created tools to determine consent for people who reside in our residential programs and show an interest in being sexually active. Also, in our health clinics we provide consent determinations to people with ID/DD who live in residences from other agencies, live independently or live with their families. (It is very important to mention that we are located in New York state and according to our legal consultants a consent determination will supersede a determination of legal guardianship because the person with ID/DD is competent in that specific area; this may vary in other states). 

Friendships and Relationships

An issue that often arises for staff is when they should intervene if two consenting people are being physically affectionate. Our policy states:

Most relationships are not sexual, but some are physically affectionate. All people have the right to be physically affectionate with an agreeable party. Physical affection differs from sex. Sex is the touching of the sexual parts (breasts, vagina, penis, anus) of the body for sexual gratification. Physical affection does not require the ability to provide consent, but rather, just a willing partner.

Therefore if the two people are holding hands or even kissing, the sexual parts are not being touched for sexual gratification and consequently they are being affectionate. Sometimes staff say that the hand holding or kissing might lead to sex. Sometimes yes, but often no. The treatment team needs to evaluate the situation and make a determination.

Education and Information

People with ID/DD do need to receive support through education about sexuality, and also may need counseling. They often have not received accurate information from trusted adults, but rather have gotten misinformation from the media and others. At YAI, we provide social/sexual training that includes how to tell the difference between friends, acquaintances, and strangers; numerous boyfriend/girlfriend issues; and numerous topics on having sex. According to our policy, we provide, where applicable:

...education and information depending on interest and need, at a level and pace people with a developmental disability can understand, including the following in this suggested order: Development of self-awareness and self-esteem, awareness of others, body language, assertion, relationships, body changes and awareness, awareness of self as a sexual being, abstinence, sexual expression, awareness of laws relating to sexual expression, avoiding abuse, personal and sexual hygiene, STDs and HIV/AIDS, pregnancy and contraception, marriage, and parenting skills.

Sexual Expression

People with ID/DD who live in YAI residential programs and are consenting adults can use their bedrooms when having sexual relations with another consenting adult. It is amazing to me that there are still many agencies that don't allow this basic human right. If a person cannot use their bedroom, where are they going to go to have sex? Almost any other place could be illegal or dangerous.

We also recognize that people have different sexual orientations and preferences. Stated in our policy is the following: "Accept that people with developmental disabilities may be heterosexual, lesbian, gay, bisexual, transgender, monogamous or not monogamous, and have the right to express themselves accordingly." As previously stated, staff do not have the right to impose our values. As long as the sexual act is legal and involves consenting adults, we don't interfere.

Reproduction and Contraception

We do address the issues of reproduction and contraception. Most people with ID/DD would have significant difficulties raising a child. Yet there are some people who can. If the person is a consenting adult, he or she has the right to determine a method of contraception if so desired. A person with ID/DD who is a consenting adult and gets pregnant has the legal right in our state to carry the child to term and attempt to raise the child, or to have an abortion, or to give the child up for adoption, and we support those rights. For those who do decide to parent, we offer parenting groups to support them in raising their children.

Sexual Behaviors

The last issue I want to address is regarding modern technology and sexual needs. Some of the people we support try to meet their sexual needs through the Internet and/or 900 numbers. We are very concerned that they might be exploited or abused due to their cognitive limitations and possible emotional vulnerabilities. Our policy states that we "Ensure that the treatment team is aware of consumer's use of technology (such as accessing personal ads, calling sexually explicit 900 numbers, etc.) in fulfilling sexual expression." Also that we "limit the use of the Internet and/or monitor telephone calls if there is probable cause that the person is engaging in illegal activity." Because the chat lines also have per-minute calling charges, we also try to keep a close eye on the expenditures of those who use them and catch any financial problem as early as possible.

Conclusion

In summary, I hope that service providers and family members understand the importance of supporting people with ID/DD regarding their sexual needs and desires. Unfortunately, far too many agencies are not willing to provide support, and rather try to repress a basic human need. If we are truly person-centered, then sexual needs, which are an integral part of the human personality, should be reflected in service plans and in a coherent, positive agency policy.