Sexual Health Education for AAC Users - Speak Up Findings
By Jake Pyne, Fran Odette and Barbara Collier
ISAAC Canada #24. April 2004
In our needs survey of 30 adults (average age of 35 years of age),
we learned that AAC users wanted information about ways that they could
reduce their risk for sexual abuse and vocabularies to communicate about
sexuality and abuse. They also identified an overwhelming need to learn
about healthy sexuality and in particular they wanted to know about sexuality
and disability, relationships, bodies, and attendant services and sexual
We felt it was important to address these issues as a foundation to our
discussions on safeguarding. Healthy sexuality is not simply the act of
sex but an integral part of our lives. Anna Freud said, "Sex is something
we do. Sexuality is something we are". Personal values, societal
beliefs, attraction, feelings, desire, identity, and self-esteem are significant
parts of sexuality that get expressed daily in many ways during communication,
recreation, work, friendship, art, and other interests.
The Speak Up educational
team is comprised of a sexual health educator, a consultant in disability
and violence, an AAC consultant and two AAC user facilitators. We provided
approximately 20 hours of group instruction over a period of 2 months
and were available before, after and between sessions for individual consultations.
On average participants requested 10 hours of personal time. The goal
was to increase the participant's knowledge and comfort level in communicating
about sexuality and to prepare the participants for the safeguarding sessions
which would deal with the topic of sexual abuse.
It was within these contexts
that we learned about the sexual health needs of many AAC users. We share
some of these findings here so that other AAC users and particularly youth
who use AAC can benefit from these experiences.
Why should we teach sexual health to AAC users?
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 very old, that cannot be separated from other aspects of human
Yet, adults who use AAC tell us that they have major
gaps in their experiences and knowledge about sexuality. One AAC user
told us that he did not learn about sex until he was in his thirties.
A woman in her 20's wanted to know about reproduction and believed that
she could not get pregnant because she had cerebral palsy. An AAC user
living in a group home environment asked if he was "allowed"
to have sex there. The majority of AAC users who participated in Speak
Up had few vocabulary items to communicate about sexuality. This lack
of information and communication tools puts AAC users in a vulnerable
Pip Farrar in her book End the Silence states that factors
that increase the risk of sexual assault include the censoring of information
and vocabulary about healthy sexuality and sexual abuse, omitting assertiveness,
decision making, and personal rights from an individual's education, segregating
an individual from the wider community and from the opposite sex, and
failing to respond to an individual's socio-sexual needs.
AAC users (adults
and youth) need to learn about sexual health quite simply because they
have the right to make their own lifestyle and relationship choices. 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, social and justice
"Understanding that people with disabilities are people
with the capacity to love and to care for others is a radical first step.
Once accepted, several others follow immediately after-the ability to
love forces a view of the handicapped person as an emotional equal. An
emotional equal is a political equal, so that if people with disabilities
can feel to the same depths as you and I can, then we need to look at
our programs and approaches in new ways (Hingsburger, 1990 p.18)
What do AAC system users need?
AAC users tell us that
- People who recognize that they are sexual
- Information about sexuality
- Vocabulary to communicate about sexuality
- People to communicate with about sexuality
- Accessible resources and services
People who use AAC systems need people who recognize
that they are sexual
Perhaps one of the most significant observations we made was the fact
that our group discussions on healthy sexuality were less interactive
for the participants than our sessions on abuse and safeguarding. Clearly
some AAC users have less experience with healthy relationships than with
unhealthy experiences. There was a general feeling of dissociation from
sexualityóthe feeling that sexuality is not something I am or have
but that it belongs to people without disabilities. Recognizing and communicating
about the lack of close, intimate (sexual or plutonic) relationships was
emotionally painful for many of the participants.
Some AAC users told us that they were not given information about "good
sex". Most of the information they received, if any, was on bad touch
or abuse which is quite useful information but much more useful in tandem
with information about healthy sexuality.
Healthy sexuality is rooted in a personal sense of identity, self-confidence
and self worth. Parents, siblings and peers play significant roles in
developing these skills, 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 healthy
sexuality and to safeguard themselves from sexual abuse.
People who use AAC systems need information about sexuality
AAC users told us that they wanted information about a range of topics.
For the most part, they wanted to discuss topics pertinent to them as
people with disabilities who use AAC. Within each session, they wanted
expressive vocabulary (picture, text displays) to be provided in addition
to information on a topic, so that they could have the words they needed
to discuss, ask questions etc. We maintained a flexible curriculum in
order to allow each participant to learn the information most useful for
Sexuality. We attempted to address all aspects of sexuality
in our educational curriculum and thus felt it was important to discuss
myths, values, society, and choices before we addressed the more physical
aspects of sexuality. Encouraging all participants to express opinions
free from judgment was fundamental to these sessions.
Sexuality and Disability (bodies: anatomy, function and
pleasure). Every participant had a multitude of questions about the impact
of their disability on their sexuality. Some of these questions reflected
cultural myths about disability, attraction, and performance and for many
participants, it was helpful to hear healthy messages about touch and
Some participants had never been able to see their own genitals. We encouraged
people to find someone they trusted to support them in this (an attendant,
health care provider etc.). We used real life photographs to show different
bodies. We talked about the function of body parts and how different disabilities
might or might not impact on function. We were also careful not to exclude
healthy discussion of pleasure, fun, and intimacy from this information.
On reviewing internal body parts, one woman became agitated when we came
to the word "bladder". Through a guessing process, we were able
to determine that she wanted to know about incontinence, which she worried
about occurring during intimacy. She could not independently communicate
with her doctor and her mother typically attended and "spoke for
her" during medical appointments.
Reproductive choices, pregnancy, birth control, STI's, HIV / AIDS.
Participants had varying degrees of needs relative to these topics. For
some, these issues were less pertinent, while for others, it was important
to receive the same information as their non-disabled peers. The process
of pregnancy, birth, and parenting were common areas for questions. Some
AAC users had major gaps in knowledge. Resources were adapted for people
who could not independently turn pages or had reduced literacy (PowerPoint
slides, audiotape). These are listed on our website and tended not to
be used by AAC users as much as service providers supporting AAC users.
For one participant, learning about HIV / AIDS was particularly relevant-see
letter from William in this newsletter.
Healthy Relationships (flirting, dating, falling in love
and breaking up). If AAC users 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 and life can
be wonderful and it can be painful. AAC users tell us they want to have
a range of relationships with the people in their lives and they need
people to understand that and support them. They needed a broad range
of vocabulary to discuss their feelings and experiences.
Sexual Identities (heterosexual, gay, lesbian, bisexual,
transgendered). Discussion about sexual identities allowed one Speak Up
participant to "come out" as gay and elicited his request for
assistance in accessing the local gay community. He wanted to attend a
"coming out" meeting but needed an escort for his attendant
services. As these meetings are private in nature, this was not something
that he felt he could negotiate with his attendant service agency. He
also wanted to go to local events and meet new people to communicate with.
Speak Up assisted an agency in finding a volunteer from the gay community
who could learn how to communicate with the man and put him in touch with
events and services in the community.
Personal boundaries and privacy. For AAC users personal
boundaries and privacy are major issues that are frequently violated.
During discussions, they shared experiences about their lack of control
over who knows what about their lives, and the indignities and infringements
of privacy they have endured with regards to their bodies, belongings,
space and every aspect of their lives. One woman told us that her attendant
was angry with her when she discovered a Speak Up communication book about
sexuality—she referred to them as "dirty pictures." A
man could not make an appointment to see a counselor because his mother
would want to know why he needed such a service.
Sexual Assistance. Most people with physical disabilities
and who use AAC require services to support them in their daily living
(e.g. meals, dressing, washroom etc.). AAC users wanted to know about
an attendant's role with regards to assistance with sexual activities
(e.g. getting ready, positioning, using birth control, sex toys etc.).
If these services are provided, AAC users need the communication vocabulary
and skills to direct their attendants in these activities. Speak Up has
found that there is no consensus amongst and within attendant services
about these activities.
People who use AAC systems need vocabulary to communicate about
AAC users need the vocabulary to communicate about sexuality. This includes
words about relationships, body parts, sex, health etc. Speak Up displays
are available on our website. AAC users tell us that they need time to
learn these words if they are to use them functionally. Many AAC users
chose not to have the words on their core displays or device but to keep
them in separate displays. Some asked that their displays be kept by a
service provider rather than risk having them in their residence where
attendants or family members might see them.
People who use AAC systems need people with whom to communicate
Like everyone, AAC users need people in their lives that they trust and
with whom they can communicate about intimate things. We all play a role
in the lives of AAC usersóare we open to talking about sex? If
not, can we put people in touch with someone who is willing and able to
discuss these issues?
People who use AAC systems need accessible resources and services
AAC users need access to information that they can understand. They need
sexual health services (e.g. buildings, rooms, examination tables etc.)
that are physically accessible. They need service providers (sexual health
educators, nurses, doctors, counselors) who know how to communicate with
them. We need to advocate and educate to ensure that existing services
accommodate AAC users. Some of the things that agencies need to consider
when providing services to AAC users might include
A. Physical accessibility features
B. Communication accessibility
- Using a third party "interpreter" to assist in communicating with a service provider
- Use of personal passports to describe communication process
- Basic communication training for service providers/agency receptionists
- Accessible information (consent forms, brochures etc.)
- Extended time for appointments
- Procedures to accommodate AAC user's privacy and confidentiality (for booking appointments, communication interpretation etc.)
- Outreach services
- Vocabulary resources relative to service topic.
Who should teach sexuality?
We all have a role to play in supporting AAC users in developing a sense
of sexual identity, confidence and dignity. Parents and teachers, who
may not be comfortable with issues relating to sexuality and disability,
may want to contact a sexual health educator (public health or school
board), a nurse or therapist (rehabilitation centre or health clinic)
or a disability consumer group (Easter Seals, Centre for Independent Living,
Ontario Federation for Cerebral Palsy etc.) Speak Up's website lists a
number of good resources and links to other agencies for information.
AAC clinicians can assist families and AAC users in obtaining the vocabulary
that they need and may play a role in alerting parents about the need
to address sexuality as part of the AAC user's transition program.
When should we teach sexuality?
You can teach healthy sexuality from the day a person is born by the way
you talk, the respect you show, and through the boundaries and privacy
you set up around that person. Talking about sexuality can happen at any
timeówhen the person brings up the topic, asks a question, etc.
But, it is important not to wait for this to happen. Some AAC users cannot
ask the questions either because they do not have the words, do not think
sexuality is relevant to them, or because they are shy about the topic.
One woman said, "Question head frustration no word" meaning
her head was full of questions that she could not ask about because she
had no vocabulary with which to ask.
Farrar, P. (1996). End the silence: Preventing the sexual assault
of women with communication disabilities. Calgary, AB: Technical
Hingsburger, D. (1990). I Contact: Sexuality and People with Developmental
Disabilities. Mountville, PA: Vida.
The World Health Organization. (1994). The Canadian Guidelines for
Sexual Health Education (Definitions). Health Canada Publications.
Speak Up website: www.aacsafeguarding.ca
Kaufman, M., Silverberg, C., & Odette, F. (2003). The ultimate
guide to sex and disability. San Fransisco, CA: Cleis Press
Wisconsin Coalition Against Sexual Assault. (2003). Creating a balance:
Promoting healthy relationships and preventing sexual assault of people
with cognitive disabilities. Madison. WI: Author.