Sexuality and relationships
18.1 The right of people with disabilities to the same degree of fulfilment through relationships and sexuality as anyone else must be included in any list of equal rights. This has widespread implications for the providers of services in housing/accommodation, education, training and counselling.
18.2 Sexuality is still a topic surrounded by sensitivities and is not as straightforward an issue to address as others in this report. But it is an area in which extraneous factors impact strongly on people with disabilities, preventing them from enjoying this aspect of themselves to the full. Without a change in general conditions and attitudes, there is little chance of real equality in relation to sexual matters.
18.3 People with disabilities are denied their sexuality primarily by the stigma which surrounds and pervades disability. In a society in which the cult of the "body beautiful" reigns one becomes less sexually acceptable the further one is from the stereotypes of beauty. For many people with disabilities this is a further burden on top of low economic and social status.
18.4 Men and women with disabilities experience this phenomenon in slightly different ways. Men with disabilities may fail to meet the standards of sexual acceptability on the grounds of economic and social status with stereotypical beauty requirements coming in second place. For women, economic and social status may take second place to the demands for physical beauty. Gay men with disabilities, however, have problems being accepted in a community which holds the "body beautiful" in high regard and are doubly discriminated against by a society which stigmatises gays and lesbians as well as people with disabilities.
18.5 A further stigmatising factor is the fear of what will happen if people with disabilities have children. There are fears that offspring will be disabled and questions raised as to whether disabled people are "fit" or "able" to parent. It may well be that these fears are in fact the prime source of all the prejudices that people with disabilities experience in relation to their sexuality.
18.6 The result of such prejudice is the "desexualising" of people with a disability - the refusal to acknowledge their sexuality. There are various ways in which this occurs, including:
- Treating a person with a disability like a child: many people with a disability are treated like children, not only by the general public but also by professionals and family members.
- Treating a person with a disability as genderless: some people argue that a "disabled" toilet is a denial of the fact that disabled people are men or women first while others argue that unisex toilets allow access to individuals whose assistants are of the opposite gender.
- Treating a person as though their appearance is unimportant: not only is the appearance of people with disabilities often considered unimportant but sometimes they are dressed, by others, in clothes more appropriate for children.
- Treating a person as if their body is not sexual: people with a physical disability who are handled more than most report that the experience being handled without the appropriate respect leaves them feeling as if their bodies have no value or sexual worth.
- Leaving people naked in hospitals for long periods as medical and paramedical staff work around them: the invisibility of sexuality in the health services is an indicator that it is low on their ageNDA despite its relevance to people's lives.
18.7 These practices may arise from an unconsciously determined need, on the part of caring personnel, to suppress the sexuality of people with disabilities. It is this need which must be tackled if those with disabilities are to enjoy equality in sexual matters.
18.8 Approaches to sex which promote any activity which both partners find pleasurable, comfortable and safe would benefit many people with disabilities. An inherent aspect of this type of approach would be an encouragement of communication between partners, as an ability to express one's sexual needs and pleasures is an essential aspect of healthy sexual relationships. Sexual aids or devices may be essential or desirable to achieving an enjoyable sexual life. However, they are difficult to procure.
18.9 The Commission recommends that the Department of Health should develop policies (including delivery structures) in conjunction with the Council on the Status of People with Disabilities in relation to the sexual rights of people with disabilities. These policies should cover the following areas:
- The right to privacy and dignity,
- The right to accessible information and guidance,
- The right to counselling as appropriate,
- The right to their bodily integrity and how this can be protected, in accordance with their ability to protect themselves,
- The right to information on family planning, contraceptive services, sex therapy services, sexual equipment, and on the prevention and investigation of sexual abuse.
18.10 Given the almost total lack of research to date in this area, the Commission believes that consultations with people with disabilities should be undertaken immediately to establish priority areas for research. These consultations should be carried out by the Health Research Board under the auspices of the National Disability Authority and funded by the Department of Health.
18.11 To address the issues raised above, the Commission also recommends that disability and sexuality awareness be included in the professional and academic training of all those who work with people with disabilities whether they are paid staff or volunteers.
18.12 People with disabilities sometimes find that their able-bodied peers are not interested in developing intimate relationships once they are aware of a disability. Not only does the stigma associated with disability reduce the sexual value of the people affected but people without disabilities fear that association with them would reflect on their own sexual and social status. Myths of dependence also create a fear that becoming involved with a person with a disability would result in all sorts of caring responsibilities.
18.13 Most damaging in this process, however, is the way it can result in people with a disability feeling that they are not sexual, not attractive, or not worthy. Sadly, this also results in people with disabilities rejecting each other and valuing relationships with other partners more highly. It also means that people with disabilities are more vulnerable to abusive relationships, feeling either that they deserve no better, or would be unable to attract a more respectful relationship.
18.14 Disability can also cause enormous strains on relationships within families. The birth of a child with a disability requires parents to cope with their own very confused emotions as well as the reactions of others. Without support and counselling it may be difficult for them to come to terms with all their feelings: if unresolved, such contradictory feelings start to impact on the family and the child. The role and activity of "caring" for the child may become a means of distraction from the parents' emotions.
18.15 One reality for parents is that they may remain actively involved in the lives of children with disabilities until much later in life than usual, given the lack of services and opportunities for people with disabilities. It is no surprise, therefore, that they have deep concerns about their own responsibilities and how far they may extend.
18.16 When a family member becomes disabled much depends upon their age, how they adjust, and what type of coping skills existed in the family beforehand. They need similar support and counselling to that required for parents of a child born with a disability. The person with the disability may need a considerable amount of support to help him/her to come to terms with the changing roles in the whole family or partnership. No statistics are available in Ireland but research in Canada found that in marriages where the female partner became disabled 90% failed while 50% failed when the male partner acquired a disability. These figures are considerably higher than average marital breakdown rates.
18.17 Privacy and personal choices are often limited in institutional and residential settings. Institutions, both large and small, have rules and regulations which invade the privacy of individual residents and inhibit relationships. All service providers, particularly residential providers must have regard to the right of the individual and practices involving segregation rather than education which deliberately prevent informed, consensual relationships should be ended.
18.18 Access to support services for adult individuals and families, where required could be provided through the Disability Support Service, and would thereby be available in all residential centres as well.
Advice and Counselling
18.19 People with disabilities have been denied access to family planning services as a result of the familiar access problems (inaccessible venues, lack of information in suitable formats) as well as unwelcoming attitudes (disapproval, unaware staff). Like many other women, women with a disability have felt uncomfortable using their own GP for family planning and tend to use clinics for crisis management rather than prevention.
18.20 Counselling in sexual and reproductive health could be particularly useful for people with disabilities who face a wide range of barriers to expressing their sexuality. Given the lack of counselling available through the general medical services, however, attending a counsellor is a luxury. All the access problems apply in the case of counsellors, particularly discriminating against people with communication problems.
18.21 People with disabilities and parents clearly want and need access to appropriate genetic and medical counselling services, in order to make informed personal decisions about having children. The knowledge generated by the Human Genome Project has enormous potential for the management of our health but, if used unwisely, it also holds the danger of creating new forms of discrimination and new methods of oppression.
18.22 All women are entitled to ante and post natal health care free of charge but the facilities offered through the public health service are often inaccessible and inappropriate for women with disabilities. Some units do offer tailored services such as the ante-natal classes with a sign interpreter in the RotuNDA Hospital in Dublin. However, there are insufficient examples of such initiatives.
18.23 The Adoption Board have no statistics on disabled parents adopting but it appears to be extremely difficult for a couple where one or both partners have a disability to adopt, especially to adopt a child without disabilities. Fostering children is an option available to them but, given the constant need for foster parents, the approach is quite different from the adoption process.
18.24 Awareness of sexual abuse has increased greatly in recent years, both through media coverage of prosecutions of offenders and through research. Research outside of Ireland has highlighted the fact that children and adults with disabilities face an increased risk of sexual abuse. They were found to be most at risk in places where they live and work rather than in public places. The factors which make them more vulnerable include:
- Their lack of control and choice over their lives.
- The encouragement of compliance and obedience rather than assertiveness.
- They come into contact with many more "caretakers" than the rest of the population.
- People with a physical disability are often exposed to intimate touching as a result of their disability and may find it difficult to establish what touches are appropriate.
- Isolation and rejection increases their responsiveness to attention and affection and, therefore, their vulnerability.
- Children with communication disabilities have been found to be at risk as they have difficulties describing their experiences.
18.25 The Commission recommends that programmes relating to sex education should be available in accessible formats, and include positive images of people with disabilities. These programmes should be provided as appropriate in all schools, training centres, workshops and residential centres for people with disabilities.
18.26 The legal system should be reformed so that it is better able to deal with cases of abuse involving people with disabilities. This may include mandatory reporting and addressing the issue of people with disabilities, especially those with learning disabilities, as credible witnesses. Sex offenders with previous convictions should not be given positions of trust with people with disabilities.
18.27 There is no precise information about the extent of sterilisation of people with disabilities in Ireland. Although men are also sterilised, this issue more often concerns women. It is assumed that the sterilisations which do take place are authorised on the basis of medical and psychological opinion and with parental agreement. It is not known to what extent people with disabilities are consulted about such decisions.
This is a profoundly complex question with ethical, social, economic and legal implications. It is a question to be faced in the future, given the developing emphasis on people's rights and changing attitudes.
18.28 There is less discussion of hysterectomy, whether consensual or non-voluntary as a means of contraception, but such practices do exist and need to be investigated.
18.29 There is evidence, too, of non-consensual use of contraception by women with disabilities. While contraception does not have the same permanency as sterilisation, people with disabilities must be protected from non-voluntary and unnecessary medical interventions.
18.30 The abortion information legislation introduced in Ireland is also relevant to people with disabilities on two counts. Firstly, it is essential that any counselling services which are available should be accessible to people with disabilities. Secondly, care should be taken with the perception of counsellors about the lives of people with disabilities to ensure they do not encourage abortion in the case of foetal disability.
18.31 The Commission recommends that sterilisation of people with disabilities on the grounds of their disability alone should be legally prohibited. In any situation where sterilisation is being considered, every effort must be made to ensure that informed and free consent exists. Where informed consent is not possible, strict legal criteria must be adjudged to exist by a court of law before sterilisation can be carried out. These criteria should include the requirement to show:
- Just and necessary cause;
- That other methods of contraception are unworkable;
- That fair procedures are observed, including medical and psychological assessment of the person's welfare and rights;
- Independent advocacy on behalf of the person and full consultation with parents and carers where appropriate.