Sexual Health: Knowledge and Skills for People who Use AAC

All items (except for sexual assistance) were adapted with permission from the Wisconsin Coalition Against Sexual Assault, Inc. booklet Creating a Balance- Promoting Healthy Relationships and Preventing Sexual Assault Against People with Cognitive Disabilities. 2003. WCASA is not responsible for the content created by Speak Up or the portions of this resource that were modified from the original.

• Why Teach Sexuality to People who use AAC
• When to Start Sexuality Education
• What to Teach
  • Sexuality
  • Sexual Identity and Orientation
  • Healthy Relationships
  • Personal Boundaries and Privacy
  • Sexuality and Disability
  • Sexual Assistance
  • Safer Sex
• For Parents and Families

Why Teach Sexuality to People who use AAC   [Top]

Sexuality is an integral part of the personality of everyone: man, woman, and child. It is a basic need and an aspect of being human, from the very young to the very old, that cannot be separated from other aspects of human life.” (World Health Organization ’94)

Learning about and having opportunities to experience healthy relationships, provides a framework for recognizing unhealthy, abusive relationships. Being able to communicate about one’s sexuality is part of exercising one’s right to sexual expression, a means of protection from abuse and sexually transmitted infections, and a means of accessing appropriate health, justice, and social services. Youth and adults who use augmentative and alternative communication (AAC) need to learn about sexual health quite simply because they have the right to make their own lifestyle and relationship choices. In addition, education regarding sexuality issues helps in preventing sexual abuse, avoiding confusion if abuse has occurred, warding off unwanted sexual advances, and engaging in healthy sexual relationships. Education on sexuality touches every aspect of a person’s life: making choices, assertiveness, self-esteem, and setting boundaries to name a few. Because sexuality encompasses every aspect of a person’s life, the opportunities to educate a person on sexuality issues are endless.

People who use AAC need:

• People who recognize that they are sexual
• Information about healthy sexuality and sexual abuse
• Vocabulary to communicate about sexuality
• People to communicate with about sexuality
• Accessible resources and services

For more information on these points see Sexual Health.

When to Start Sexuality Education   [Top]

Sexuality begins at birth. Sexuality changes and evolves over time but essentially it lasts for our entire lifetime. From infancy on we have the capacity to show sexual response. Education should start early, but this does not mean that we need to explain intercourse to toddlers. Nor does this mean that we should wait until after someone has entered puberty to begin discussing it. Sexuality education should be matched to the person’s age, developmental level and learning style. Sexuality education is about relationships, feelings, privacy, and bodies, as well as intercourse, masturbation, menstruation, ejaculation and much more. Primarily, sexual health education is about discussing choices.

What to Teach   [Top]

All people have questions and need information about sexuality. The ideal environment for learning is one in which people are free to express opinions and ask questions without judgment. People who use AAC are a diverse group of people with diverse needs. They may or may not have basic information about sexuality and may or may not know how to describe or participate in sexual activity. For some, it may make sense to learn about myths, values, society, feelings and touch as well as discussing the details of birth control or HIV/AIDS. Do not underestimate the importance of youth and adults with disabilities having access to the same information as their peers. This will be important for them to relate as equals. In addition, it is equally important for youth without disabilities to learn positive information about disability during their sexuality education.

• Teach how to correctly identify body parts by naming body parts in play, when bathing, on a doll etc.
• Model privacy from a young age. For example, where possible ask permission to enter their bedroom or bathroom.
• Practice setting boundaries with different people in their life. For example, allow youth to establish who they are/are not comfortable receiving personal care from, talk about who to hug, who not to hug, etc.
• Respect decisions they make about when and with whom they are affectionate.
• Provide information about sexuality that is appropriate to the person’s developmental level.
• Be a positive role model in communicating about sexuality.
• Teach that sexuality is normal, sexual behaviors are a source of pleasure and an expression if intimacy.
• Reinforce that sexuality is about choices.
• Teach about puberty, menstruation, and nocturnal emission.
• Teach about the birth process.
• Normalize masturbation and sexual feelings. Do this with expectations as to where and when acting on these feelings is appropriate.
• Teach about birth control, sexually transmitted diseases, HIV/AIDS and safer sex practices.
• Teach proper medical terminology as well as slang or popular terms.
• Teach about sexual diversity such as straight, gay, lesbian, bisexual, and transgendered.
• Teach respect of diversity in general including race, gender, sexuality, disability.
• Teach about dating violence and encourage self-esteem and a sense of deserving respectful treatment.
• Teach about unwanted sexual touch and saying no.
• Discuss the many different types of relationships. Respect the importance of friendships but do not discourage having crushes, falling in love, or dating.
• Discuss consequences of inappropriately touching someone – both for the person being touched and the perpetrator.
• Teach about stereotypes. Offer realistic and accurate information. Address myths or discrimination they may be experiencing in relation to their disability. Validate those experiences as real.
• Seek out positive role models with disabilities.
• Answer questions about sexuality honestly or help to find someone who can.

Sexuality   [Top]

It is important to address sexuality broadly rather than focus on the act of sexual intercourse. Personal values, societal beliefs, attraction, feelings, identity, and self-esteem are significant parts of sexuality. When introducing the concept of sexuality it is the perfect time to address the many myths about people with disabilities and sexuality. Myths such as: people with disabilities are not sexual; they are not gay or lesbian; and they do not need to have relationships or to be parents. These myths are very powerful and often create huge obstacles to learning about and expressing healthy sexuality as well as to accessing important community services. These myths also create a climate in which the topic of sexuality can be painful for many adults who use AAC, leading to feelings of detachment from sexuality – the sense that sexuality belongs to other people. Acknowledging and allowing people to communicate about sexuality is the first step in promoting health. It is also important to recognize expressions of sexuality that a person can engage in without a partner such as masturbation, fantasy, erotica, etc.

Sexual Identity and Orientation   [Top]

People who use AAC can be gay, lesbian, bisexual and/or transgendered. These are real and valid identities and should be respected. Some people with disabilities who are lesbian, gay, bisexual, or transgendered may need additional support to deal with the double stigma of this as well as having a disability. Some may require support through the coming out process, accessing the GLBT community, understanding and appreciating their sexuality/identity, and choosing to tell others. Some people may need extra confidentiality during this process. If a person is transgendered, they have a right to choose whatever name/pronoun they prefer regardless of the person’s legal identity or physical characteristics, as well as the right to access support for exploring possibilities of transitioning to their known gender.

Healthy Relationships   [Top]

If people who use AAC are to live full and happy lives, they need to have friends and people they love within their lives. They need to be able to communicate about crushes, flirt, date, fall in and out of love and have their hearts broken. This is part of life. When learning about healthy relationships, it is also an ideal time to learn about abuse: what it is; the different forms; why it happens; and options for dealing with it. People should be encouraged to think about and communicate about what they would like in a relationship. They should also be encouraged to recognize abusive situations and practice making their own decisions and asking for help.

Personal Boundaries and Privacy   [Top]

For people who use AAC, personal boundaries and privacy are major issues that are frequently violated. As people who often require assistance with communicating, transportation, eating, bathing, dressing, and many aspects of daily living, people who use AAC can often become accustomed to having little or no privacy. However, privacy is important for the maintenance of healthy boundaries and the development of a sense of ownership over one’s body. Privacy is important for safety and abuse prevention, and is a basic human right. People who use AAC may need people with whom they can discuss healthy boundaries and privacy issues. Problem solving and decision-making can be facilitated by role playing problem scenarios and discussing various solutions.

Sex and Disability   [Top]

Many people with physical disabilities have questions about body functions and how their disability impacts on their sexuality. Questions about bladder and bowel control as well as questions about positioning, reproductive, and contraceptive options are common concerns. It is also important to discuss pleasure, fun, and intimacy. It is helpful for many people with disabilities to hear the ways that their bodies are the same as the bodies of other people. Discussions with other people with disabilities or group education sessions are valuable formats for sharing this information. Seek out resources (books, videos, pamphlets) developed by the disability community for assistance.

Sexual Assistance   [Top]

Sexual assistance refers to attendants providing assistance to consumers who are engaging in consensual sexual activity. Speak Up does not support attendants themselves, engaging in sexual activity with consumers.Many people with physical disabilities who use AAC require services to support them in their daily living (e.g. dressing, personal hygiene, transferring etc.). One component of this support may include assistance with sexual activities (i.e. preparation, positioning, using safer sex supplies, birth control, masturbation, etc). Some attendant services will support a consumer in sexual assistance and many more will not. In Ontario, there is no consensus amongst and within attendant services about these activities, and very few clear policies exist, despite evidence that policies facilitate safety for everyone involved. People who use AAC may need support in getting information about their agency’s policies around this issue.

Safer Sex: HIV/AIDS, STI’s, Reproductive Choices, and Birth Control   [Top]

Anyone who is sexually active is at risk for STI’s, HIV/AIDS, or pregnancy, and so people who use AAC require the same information as other people when it comes to safer sex. Many people believe that people with disabilities are asexual and as a result they will not get pregnant or contract an infection. Because of this, many people with disabilities are not informed about ways to protect themselves and are therefore at risk of becoming pregnant or contracting infections. People who use AAC also require information about reproductive options such as adoption, abortion, and parenting and can benefit from information about parenting with a disability. There are curriculums for safer sex education available through local Planned Parenthood offices and AIDS service organizations in different regions. In addition, people who use AAC may need information about directing others to physically assist with safer sex supplies and directing attendants to recognize the symptoms of infection. Speak Up has useful sexual health resources on our website and in accessible formats in our loan kit.

For Parents and Families   [Top]

On a daily basis, there are things that you can do to support healthy sexuality for someone who uses AAC. This support will vary depending on the setting and the individual, but the general attitude and approach should remain positive and affirming.

Education regarding sexuality helps prevent sexual assault, address unwanted sexual advances, and helps people engage in healthy sexual relationships. Healthy sexuality is rooted in a personal sense of identity, self-confidence and self-worth. Parents, siblings, and peers play significant roles in promoting healthy sexuality (link) as do teachers, clinicians and health care providers. If we fail to recognize sexuality as an integral part of an individual, we will fail to provide the necessary supports for them to develop a healthy sexuality and to safeguard themselves from sexual abuse.

The greatest impact families and providers can have on an individual is to model healthy attitudes towards sexuality. These actions can be done while driving, making dinner, helping a person get dressed, and simply having a conversation. Allow individuals with disabilities to make honest and open choices about simple and complex issues in their lives. If an individual cannot safely and assertively request something different for dinner, how can we expect that person to assertively claim privacy rights to her or his body?

• Treat people who use AAC as adults with needs, desires, and hopes: regardless of their disability. People want and deserve respect.
• If you are not comfortable providing sexuality education, find someone who is comfortable.
• Facilitate friendships. Provide support for maintaining these friendships (e.g. transportation, assistance with phone calls or email, attendant services for going out, etc.)
• Role model healthy relationships.
• Set boundaries. Make sure that others seek and expect permission before touching them and that they obtain the permission of others before touching them.
• Address personal issues in private settings.
• Validate and respect when someone feels uncomfortable getting personal assistance from certain individuals.
• Allow individuals to have security locks or keys for private belongings.
• Respect the privacy of their communication device / display.
• Ask their permission before speaking to others about their life.
• Encourage problem solving skills rather than protection.
• As individuals get older, allow them more privacy. Step back and ask yourself what information you need to have and what information you are simply accustomed to having.

Choose a day and take an inventory of privacy standards in the home:

• Is the person able to bathe with the least amount of supervision and the most privacy affordable?
• Does the individual have the right to keep his/her bathroom or bedroom door closed? Do visitors knock before they enter?
• Is he or she allowed to have private areas in their communication device?
• Is the right to deny or request assistance supported?
• Are personal issues addressed in private?
• If old enough, is the individual permitted to go out with the minimum of explanation and intervention?

Attitude Checklist for people who work with AAC users

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