| Barriers Which May Be Experienced by AAC Users in Accessing
Community Resources, Information and Services Relating to Sexual Health
and Abuse
Developed by Speak Up, Oct. 2003
People who use Augmentative and Alternative Communication
(AAC) and who have physical disabilities may experience a number of barriers
in getting information and accessing services relating to their sexual
health or when reporting sexual abuse.
The following is a summary of the common barriers reported by adults who
use AAC. Please note that this is not a full list of the issues. We have
include some recurring themes as expressed by AAC users.
Attitudinal Barriers: [Top]
Many people have narrow and/or negative attitudes and beliefs about what
is appropriate sexual behavior for people with disabilities. The following
myths contribute to barriers experienced by AAC users in gaining access
to information and services relating to sexuality, sexual health and abuse:
- People with disabilities are asexual and don’t need to be bothered
with sexual relationships.
- People with disabilities are child-like and dependent and therefore
need protection.
- If people with disabilities know about sex they will want it.
Negative attitudes and misguided beliefs about people with
disabilities and their sexuality can exist to varying degrees and within
a range of service agencies. Negative attitudes hurt the emotional, social
and physical health of people with disabilities of all ages. They contribute
to the censoring of information and the inaccessibility of sexual health,
counseling and legal services. They devalue a person’s dignity and
increase their risk for sexual abuse.
Transportation Barriers: [Top]
For people without disabilities, taking public transportation may mean
going to the nearest bus stop, taking a subway or phoning for a taxi.
People who use AAC and who have physical disabilities may need to take
wheelchair transit systems. In addition to the frequent frustrations experienced
in using these systems, AAC users report that they also experience:
- Communication challenges using the telephone when booking their transportation
rides.
- Lack of privacy when they need to rely on someone to make the transportation
plans on their behalf.
- Lack of anonymity about the places to which they go. For example,
they may know the bus driver from frequent use of the transportation
system.
- Lack of spontaneity within the transportation system and the need
to book days in advance. This can be a major safety issue if they feel
unsafe with a person or in a specific place.
- Lack of reliability of the transportation service and resultant missed
health appointments and social engagements.
Building and Room Barriers: [Top]
People who use AAC often have physical and mobility disabilities that
necessitate the need for physically accessible buildings and communities.
One person’s perception of “accessibility” may not be
accessible for another person.
AAC users tell us that many community services:
- Lack accessible ramps, doors, examination tables, elevator buttons,
washrooms etc.
- Lack standards upon which to describe their building’s access.
- In addition to community service agencies, AAC users report that there
are few accessible bars, strip clubs, sex toys stores etc.
Attendant Service Barriers: [Top]
Most people who use AAC and have physical/mobility disabilities rely on
personal attendants and attendant service agencies to provide them with
their daily routine services (e.g. dressing, meals, transferring etc.).
AAC users tell us that:
- In some agencies there is no clear consensus on what attendant services
do and do not do in relation to assisting people in sexual activities.
- They do not know their agency’s policies about sexual assistance
and are hesitant to ask for fear the inquiry might be poorly interpreted.
- They rely on their intuition and their own relationship with an attendant
before asking if that person will assist them in sexual activities.
Jane told us that her relationship with one attendant was “never
the same” after she asked and was refused assistance.
- Most agencies do not provide off-site or escort attendant services
for assistance with personal hygiene, lifting, positioning, taking off
coats, etc. and this impacts on their ability to attend clinical and
social events.
- Depending on the nature of the service/event, he/she may want an anonymous
or a trusted familiar attendant and the right to choose their attendant
for different events.
- Few attendants are trained in assisting people with safe sex procedures
and/or using birth control methods.
Lack of Vocabulary to Communicate: [Top]
Many people who use AAC and who have reduced literacy skills require ways
to communicate about sexuality.
AAC users tell us that:
- They may not have the words, pictures or symbols to communicate about
sexuality, sexual health and abuse.
- They require ways to keep their sexuality vocabulary private in their
AAC systems and/or displays.
- They need time and support in learning sexual and safeguarding vocabulary.
- They need support and opportunities to practice using these vocabulary
items.
Lack of Skilled Communication Partners: [Top]
Many AAC users rely on the person with whom they are communicating to
co-construct or “interpret” their communications (e.g., eye
gaze systems, incomplete sentences etc.). Service providers who are unfamiliar
with such techniques may feel uncomfortable or incapable of communicating
with an AAC user.
AAC users tell us that service providers need to know:
- How a person uses AAC.
- How to ask questions so that an AAC user can answer.
- How to facilitate communication with an AAC user.
- How to assist AAC users when communication breaks down.
- How to listen to and talk with a person who uses AAC.
Lack of Information About Sexuality
and Abuse: [Top]
AAC users tell us:
- They may experience difficulties getting information about sexuality,
sexual health and abuse because they do not have the words or pictures
they need to ask questions about these matters.
Sue used symbols to tell us: “Painful. Questions
in head. No words” - meaning “it was painful to have questions
(about sex) in my head and not to have the words to ask.”
- They may experience difficulty reading books and brochures.
- They may be unable to physically turn pages in a book.
- There are very few resources about sexuality and disability, particularly
for males.
Lack of Communication About Safer
Sex and Birth Control Methods: [Top]
- People with disabilities and who can speak must be able to direct
their attendant in their use of birth control products. AAC users tell
us that they frequently lack the knowledge, vocabulary and skill to
communicate about safer sex and birth control methods.
- The majority of birth control methods and sex toys typically provide
instructions for use for people who do not have disabilities. There
is a need to customize these for individuals with disabilities.
Lack of Privacy: [Top]
AAC users with physical disabilities may need to rely on personal attendants
to assist them in a range of activities that infringe on their privacy.
This could include activities that are of a private/sensitive nature such
as assistance in putting on an erotic video, using birth control methods
or sex toys, setting up and cleaning up before and after sexual activities.
AAC users tell us:
- They may need to rely on someone to make phone calls, set up appointments
and make transportation plans, which are of a confidential nature.
- Their care providers often have access to their personal belongings
and can be judgmental and critical about these.
John communicated using pictures: “Person pictures
bag angry Dirty”. He was referring to his service provider who
took his sexuality display pages out of his wheelchair bag and was
angry with him. She said they were dirty pictures.
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