SHINE SA supports the position of the World Health Organization on sexual rights of people living with a disability. These include the right to:
These positions are also consistent with the principles of the United Nations Convention on the Rights of Persons with Disabilities, which has been ratified by the Australian Government.
The formal positions above are in contrast to the lived experience of many people living with a disability, who may experience: a lack of permission to learn about, communicate about and express their sexuality and gender; a lack of opportunity to have relationships, exercise choice about sexual activity, or take reasonable risks in their lives.
Adults who were born with a disability commonly report not getting enough support or information about growth and development or sexuality and relationship issues as they grew up, went to school and joined the post-school world. They can find themselves being treated as perpetual children by everybody, and the journey to assert themselves and be accepted as an adult can be a frustrating experience.
An approach which only emphasises deficits and limitations in the person closes off potential for positive learning, life opportunities and support in a person’s life – indeed, denies that a person has any sexual needs at all.
SHINE SA respects that a social understanding of disability is essential when considering sexual health and disability. A social understanding emphasises strengths, capabilities and potentials as well as removal of social and institutional barriers to access, participation and learning.
Where a person has a learning disability or intellectual disability, the emphasis needs to be on finding the methods of learning which suit the person best.
SHINE SA urges people with a disability to take courage and to seek information, support and action in this key area of life. Expect to be treated as a whole person. Professionals should be prepared to help you get information, support and to take action on sexual and reproductive health and relationship issues in life. If at first you are not taken seriously, keep speaking your mind. This includes when meeting with Planners and Assessors from the National Disability Insurance Agency. Make sure that your sexuality and relationship goals are firmly and loudly on your agenda, otherwise planners and assessors may not ask you any questions about this area of your life goals. If you are not sure how to put things into words, there are special assessment tools available which they can use to help you express what you know and what you want.
It cannot be overstated that people with disabilities are often placed in a position of dependency on others and that this raises the risk of restrictive practices and abuse of various kinds, including sexual abuse.
As awareness of the incidence of sexual abuse has grown in the community, parents’ levels of anxiety and concern have been understandably heightened.
It can be tempting to consider protection of a vulnerable person from all learning about sexual matters in the hope that this will protect them from all sexual experiences. This is not necessarily the case. Focusing only on ‘stranger-danger’ rather than building skills in self-assertiveness and understanding about the rules about touch and sexual behaviour can create a false sense of safety for parents and a sense of anxiety for the vulnerable person. Most sexual abuse occurs at the hands of people who are well known to the vulnerable person. This includes ‘responsible’ adults as well as peers. It is important to remember that protection-only at the expense of learning about boundaries, consent, choices, privacy and one’s own body may have its own costs in the long term.
Silence about personal boundaries, consent, right to privacy, and other sexual matters may only deepen the risk of abuse or simply contribute to unnecessary anxieties or problematic social and sexual behaviours.
There are many excellent illustrated books, videos and teaching kits which help provide a balanced approach and which anticipate need rather than just reacting to problems.
People living with a disability need sexual health checks, pap smears, testicular checks and prostate checks just as anyone else does. Preparing individuals for this experience may require significant attention to their education about personal rights, public and private parts, boundaries, the right to say no, the concept of infection, the step-by-step process of clinical sexual health checks and so on. If someone is sexually active, then they may also need to learn how to make a clear and active choice about contraceptive methods and how to use condoms effectively. SHINE SA encourages families, schools and service organisations to make this education a part of their preparation for a person’s personal and private adult responsibilities. All SHINE SA clinics have a no-lift policy, so support people may be required for some examinations.
Referrals to services for interventions regarding sexuality issues most commonly relate to problematic sexual behaviours in people with intellectual disability, autism spectrum disorder or acquired brain injury. Such behaviours often stem from a lack of early investment in effective education (or re-education) about legitimate private sexual behaviours, consent, personal boundaries and socially acceptable behaviours. South Australia has a range of workers based in many agencies who have experience in this area of work and who may be able to provide advice and offer strategies.
Adults who acquire a disability through accident commonly report that the first question they ask themselves and their staff during rehabilitation is whether they will ever again be able to have sex, self-pleasure or have a functional romantic and sexual relationship. The important thing to keep in mind is that severe injury is likely to cause changes of many kinds, including body-image changes, sexual response changes and possibly an inability to engage in sexual intercourse. However, this does not stop creative exploration of other forms of intimacy.
Any long-term partner of a person with significant injury may also experience a move from lover to carer. This transition can be a difficult one and it is common for partners to withdraw sexually from their disabled partner for a period of time, as a legitimate way of coping, especially if a brain injury results in the injured person making unreasonable sexual demands. However, many couples work out this area of their relationship with time, space, patience, love, compassion and access to professionals who are prepared to listen.
Professionals can play a key role in modelling a genuinely open and responsive stance about sexuality with their clients. It is worth checking agency policy and procedure on sexuality and human relations, and consulting with Managers and Team Leaders about the level of support they are prepared to give to this area of work. Consider offering your clients an assessment of sexual knowledge and attitudes within any general assessments of need and give them permission to ask for attention to this area of their lives. Consider training and development for yourself and developing a core group of staff in your agency to hold the sexuality portfolio so that there is formal expertise and knowledge on-hand. SHINE SA offers training options to disability workers and there are many websites and other resources which are very useful. Click here for details on SHINE SA training,
SHINE SA’s Library & Resource Centre is a key community resource for the disability community, with a large collection of books, manuals, videos and specialist teaching resources tailored for disability and sexuality learning. Many ages and disabilities are catered to. Books and some videos are available free-of-charge and anyone may join. Parents and individuals living with a disability are especially invited to join the Library. To find out more see SHINE SA Library.
Organisations may access the specialist teaching resources and most videos for an annual fee. The catalogues can be accessed at Resource Centre.
Friendships and dating booklet: Information about relationships for parents, carers and young people with a disability.
Life Out Loud Pilot Project: Evaluation Report Executive Summary: A copy of the full report is available from SHINE SA on request.
Sexuality and Disability Links: This document provides links to many websites and online resources based with other organisations.
Improving Sexual and Reproductive Health for People with Disability Report from the SH&FPA Disability Special Interest Group, May 2013.
A Worker’s Guide to Safe-guarding People Living with Disability from Abuse. A booklet to help disability professionals recognise and respond constructively to abuse or restrictive practices in the lives of their clients with a disability. Written and produced by the Australian Disability Professionals, South Australian Chapter. Reproduced on this website with permission.