i) Sexual rights and principles of sexual responsibility

People with a disability are entitled to the same rights as are enjoyed by every other citizen. It is the responsibility of service providers to enforce and protect these rights.

People have the right to:

• have their sexual needs and preferences accepted and treated with respect
• privacy and confidentiality in all aspects of their lives including their personal relationships
• a sexual relationship with another person if both are over the age of consent
• stop having sex with someone at any time
• get the following information in ways that they can understand: – social relationships and communication skills – sexual matters including contraception, masturbation, sexual hygiene, pregnancy and prevention of sexually transmitted diseases – social and legal responsibilities regarding sexual relationships – ways of avoiding exploitation and abuse
• marry or live with a partner of their choice and have children.

Principles of sexual responsibility

• Do not sexually harass another person
• Never pressure someone to have sex
• Respect your partner and their feelings
• Share responsibility for contraception with your partner
• Share with your partner the responsibility for maintaining yours and their sexual health
• Activities involving self-pleasuring should be conducted in private.
• If you are having sex, the following should apply: – sex should be for mutual pleasure, never used for punishment – never hurt someone you are having sex with – stop having sex with someone if they say ‘stop’.

Taken from You and Me: An education program about sex and sexuality after traumatic brain injury (1999).

 

 

ii) Myths and countering myths

People with TBI have the same relationship and sexual rights and responsibilities as everyone else.

Isolation and myths about the sexuality, or lack of it, of people with disabilities have deprived many people of information, skills or opportunities and made it difficult for them to exercise their rights and responsibilities in sexual functioning.

Workers in this field need clear information about sexuality as well as practice in talking about sexuality, so that they can be good allies to people with TBI. Being a good ally means working with their clients to support and maintain their human and sexual rights. It also means helping to break down myths and misinformation that people in the community may still believe about the sexuality of people with TBI.

( Adapted from Double Taboo: Sexuality and Disability produced by the Family Planning Association of NSW, 1990.)

Common myths

Common myths are that:

• people who have a cognitive or physical disability are asexual – they can’t do it and they don’t want it
• people who become disabled are no longer attractive to their partners
• sex is physically painful for people who have disabilities
• having to plan new positions and strategies for having sex destroys intimacy
• allowing people with cognitive disabilities access to sexual information or activity will lead to uncontrolled and inappropriate sexual behaviour
• there are no avenues for sexual expression available to people with disabilities
• people with cognitive disabilities cannot learn appropriate sexual and relationship behaviour
• they are best protected from exposure to any experience that might have a sexual aspect
• people who have severe disabilities are so unattractive to others that there is no need to protect them against sexual exploitation nor to teach them self-protective behaviours.

Countering the myths:

• People with TBI or other disabilities have the same range of needs for relationships and sexual expression as others in the community.
• People who acquire a disability may still be sexually attractive to their partners; although changes in roles in their relationship may affect the level of sexual desire, for example where one person becomes the carer for the other.
• There is no evidence to suggest that sex is more painful for people who have a disability. Experimenting with new positions for sexual intercourse can reduce discomfort where there is a physical disability.
• Having to plan position and timing may reduce spontaneity, but sex remains an important physical expression of intimacy even without previous levels of spontaneity.
• Access to information, skills acquisition and appropriate psycho-sexual opportunities are safeguards for both people who have had head injuries and the community. Even family members who are strongly opposed to sexual information being given, may see the sense in ensuring that their relative with a TBI has enough information to be safe from sexual exploitation.
• There are opportunities for sexual expression for almost everyone. These may include masturbation, erotic literature and videos, fantasy, long-term sexual relationships and visits to sex workers.
• Most people with cognitive disabilities can learn appropriate sexual behaviour. The content and method of teaching information needs to be tailored to fit their needs and best means of learning new information.
• All people are sexual beings. Protecting people with TBI from exposure to sexual experiences will not stop them from having sexual feelings; it will only limit their understanding and experience.
• Sexual abuse or exploitation occurs because of a power imbalance between individuals, not because of physical attractiveness in a stereotypical sense. Thus everyone needs to have some self-protective behaviours, as well as living with defined rules that limit the opportunities for others to exploit them sexually.

 

 

iii) Responding to individual needs

People with TBI are as varied in their sexual knowledge and experience as are the rest of the community. Some will have sound knowledge and broad experience from before the injury that helps them deal with post-injury sexual issues. Their confidence in their ability to have sexual relationships is likely to be affected if they have lost some social sensitivity, or have developed sexual dyscontrol as part of a general pattern of disinhibition, or have suffered loss of self-esteem and changed body image. In these circumstances they will need help to deal with their losses.

Other individuals will have had very little information and less experience before their head injury. If they are still young, they will need to be given appropriate sex education in accordance with their family’s values, as well as follow-up opportunities to develop psychosocial and sexual skills.

All people, including those with TBI, are entitled to have basic needs in human relationships and sexuality met.

1. Development of self-awareness and self-esteem

• Sense of oneself as a unique individual, who is an acceptable person, after a head injury.
• Development of personal beliefs and values.
• Awareness of own feelings and an understanding that everyone has them (anger, love, embarrassment, hate, confusion, loneliness, guilt, fear, etc.)
• Being able to express feelings in acceptable ways and to change them if required.

2. Body awareness

• Development of a positive body image after a head injury.
• Sense of ownership of, right to, or control over, one’s body.
• Information about how the body works, including sexual and reproductive parts.

3. Awareness of others

• Awareness of others, including their difference and sameness to us.
• Awareness of the way we affect others via our actions and feelings, and development of responsibility for our own actions.

4. Relationships

• Understanding of what relationships are, different kinds of relationships, different kinds of behaviour involved in them.
• Understanding of, and skills involved in, making and maintaining relationships.

5. Awareness of social custom/rules/values

• What is considered acceptable behaviour in the general community, and variations in relation to particular communities where appropriate.
• Specific awareness of appropriate physical touching in relationships and of one’s own body.
• Discussion about different values people hold, particularly in areas of sexual morality.

6. Self assertion

• Developing confidence in interacting with others and asserting one’s own views and needs. This results in: – less vulnerability to exploitation – less compliance – greater responsibility for self – problem-solving and negotiating skills – understanding the consequence of one’s actions.

7. Awareness of self as a sexual being

• Understanding that sexuality is a normal and healthy part of life and that we have choices about its expression.
• Understanding the differences between love and sexual desire (they are not the same thing) and appropriate ways of expressing them.
• Accurate, non-judgmental information about sex, including possible consequences, such as pregnancy and sexually transmitted diseases including HIV.
• Issues of rights and responsibilities and issues connected to sex and different kinds of relationships.

Adapted from Sexuality: Rights and Choices produced by Philomena Horsley and Sylvia Azzopardi for the Family Planning Association of Victoria, 1990

 

 

iv) Case study: Peter

Peter was a 45 year old man who sustained a severe TBI as well as leg fractures as the result of a serious fall. He was admitted to the rehabilitation inpatient unit for treatment. It is now 16 months post-injury. His recovery has stabilised and his current situation is as follows:

Physical: His right shoulder was damaged and still caused him pain. He has only limited range of movement in his right arm and his right hand is curled up and cannot be used for much. His left shoulder was undamaged and he has good range of movement in his left arm although he moves it slowly and he still has fine motor skills in his left hand. Prior to the injury he was dominant right hand.

His legs were badly injured in the fall. He is only able to stand on the legs for short periods of time with two staff supporting him and is unable to move his legs in any co-ordinated fashion. However, his legs give him no pain. He is not able to turn independently in bed and needs staff to turn him. He normally sleeps on his back but also likes to lie on his left side. However, he is quite robust and does not experience pain in being turned in bed.

He uses a catheter to manage urinary incontinence and has an enema three times per week.

Cognition: His memory is mildly impaired. He needs to have every appointment written down but his concentration is usually good. He can normally recall a reasonable amount of previous interviews.

Mood: He has been depressed over the past 8 months and is currently on anti-depressants. His mood has been improving over the past 4 weeks.

Social: He got married 6 months ago to a woman he had known prior to the injury. It was his first leave from the hospital as he lives in rural NSW. The marriage was not consummated during the five days he was away.

Pre-injury sexual functioning: He reported that he had a normal and active sex life before the injury.

Current sexual concerns for Peter and his partner: Peter reports that he has trouble getting erections since the injury . He states that he doesn't feel horny a lot of the time. Before the injury he felt as if he couldn't live without sex but now he only sexually aroused on occasions. He is concerned about whether he can still ejaculate. He has tried masturbating a couple of times but this did not result in orgasm or ejaculation. His wife is concerned about his incontinence and how that might affect any lovemaking. She feels a bit daunted but both are keen to try and establish a sexual relationship.