In the Convention on the Rights of Persons with Disabilities (CRPD) [1
], sexual health, security in relationships, and a meaningful social and intimate life are recognized rights for persons with disabilities. In particular, “States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others” (article 23) [1
]. While there is growing awareness of these rights, very limited progress has been made in supporting these individuals in creating and maintaining intimate and personal relationships [2
]. Sexuality is a matter of equity, rights, and ethics, especially when it refers to the sexuality of people with intellectual and developmental disabilities [3
When young people with intellectual disabilities begin to explore their sexuality, they face a number of challenges to access information and support. Unlike most non-disabled peers, young people with intellectual disabilities face the challenge of developing their sexuality and relationships within a very narrow and regulated environment [4
]. Even though sexuality is recognized as an integral part of the adult life of any person, this part of life is denied to people with intellectual disabilities [5
]. People with intellectual disabilities are seen as perpetual children who do not need to know about sex, or they are seen as sexually dangerous because they cannot adequately control their sexual instincts [6
The opportunities people with intellectual disabilities have for expressing their sexuality are limited and controlled by others, be they caregivers or family members [7
]. Thus, they are not provided with opportunities to have sexual experiences and they are not offered private environments to satisfy them [8
]. Couples are not allowed to be alone, and restrictions are imposed on them [10
] even though the CRPD states no person with disabilities, regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy (article 22) [1
]. Staff feel uncomfortable supporting people with intellectual disabilities in developing sexual and intimate relationships [12
] and their behavior is reactive rather than proactive [13
Because of their circumstances, many adults with intellectual disabilities live in residences, foster homes, or with their families. These living arrangements imply the ongoing presence of an adult and a subsequent lack of privacy. These adults with intellectual disabilities do not choose who they live with, their routines, or their daily activities [6
]. Caregivers’ attitudes directly influence the attitudes and experiences of people with intellectual disabilities, often limiting the expression of their sexual desires and their rights to live a sexual life [8
]. Services for people with intellectual disabilities often lack policies that support sexual experiences in this population. Professionals who attend to them often lack training on sexuality and the sexual development of the people they serve [17
]. The sexual needs of men and women with support needs are ignored; there is no concern for their need to establish friendship and partner relationships, and their sexuality and need for privacy is ignored [18
]. Staff actions are focused on avoiding sexual relations, sometimes acting as “policemen” and censors of any sexual manifestation by people with intellectual disabilities.
Despite all these barriers, people with intellectual disabilities still look for ways to have sex, even in the most restrictive environments [21
]. Sometimes, the behaviors of the professionals, single gender living arrangements, and single gender dressing rooms and toilets favor the development of same-sex sexual behaviors due to easier access. The sexual education people with intellectual disabilities receive is limited and rarely includes topics such as homosexuality or bisexuality. It is focused on non-reproductive heterosexual behaviors and in obtaining self-pleasure through masturbation, especially when aimed at men with intellectual disabilities [24
]. Likewise, existing research focuses mainly on the prevention of sexual abuse of persons with intellectual disabilities, with limited attention being paid to other aspects of their sexuality [25
]. In short, people with intellectual disabilities have very limited information on how to behave with their partners from a sexual point of view [25
]. Moreover, as pornography is often used as a tool to learn about sex and sexual relationships [31
], witnessing high-risk sexual practices in the absence of education led some young people to engage in high-risk sexual behaviors. This is particularly relevant to people with intellectual disabilities as they may internalize what is witnessed in pornography and may be more likely than the general population to act upon it [31
]. Nonetheless, sexually inappropriate behaviors are considered problems in this population rather than an expression of a lack of information on sexual behaviors [5
While the issue of sexual relations is a source of concern for professionals and parents, and actions are taken to preserve people with intellectual disabilities from abuses, pregnancy, or sexual transmitted diseases, they are being denied, at the same time, the same rights and needs that their peers without disabilities enjoy. An additional element that aggravates the issue is that there are no clear agreements or guidelines on sexual relations for this population [31
], nor are there preventive or intervention programs that cover topics beyond biological and medical perspectives. Common contents in these programs are the names of female and male genitalia, the use of condoms and contraceptive methods, and information on sexually transmitted diseases [11
]. While these programs are necessary, they are not enough. There is a complete lack of programs that go beyond these topics to include other concepts that actually serve to prevent abuse in this population [4
]. Despite what we have described, we must also highlight that, despite the above, more and more organizations representing people with disabilities are claiming the right to experience sexuality as a recognized right and as a factor associated with quality of life [20
]. Inspired by these principles, some very promising intervention proposals have been developed [35
], although there are few publications reporting the outcomes and impact of their application in long-term behaviors [37
]. Another example that foresees a change in this general lack of programs is the intervention aimed at improving the communication between parents and children with intellectual disabilities on sexual matters, which shows positive effects [38
It is a challenge to find a balance between providing individuals with intellectual disabilities with the necessary protective supervision so that they are not victims of abuse, while also allowing them to enjoy their rights and freedom. The need to protect them from abuse cannot be based on the denial of a fundamental right: the right to live their sexuality. The information and training on topics related to a healthy sexuality will show them how to identify situations of abuse and how to say no to situations that they want to refuse. With adequate training and support, people with intellectual disabilities are capable of safe and constructive sexual expression and healthy relationships; this support is an essential part of aiding people with intellectual disabilities [39
]. As an illustration, a review of the literature [40
] shows that there is very limited information on what methods are effective in teaching sex education to people with intellectual disabilities. Regarding sexuality, the authors emphasize the need for more information about what should be taught and how it should be taught.
With regard to what needs to be taught, the literature shows that people with intellectual disabilities experience a number of issues in their sexual health. These problems are not necessarily different from people without a disability, but the degree to which they experience them is much greater. One problem is sexual abuse, which has been reported with much higher frequency in this population than in the general population [19
]. In addition, they experience more difficulties in finding, obtaining, and maintaining desired relationships [13
]. These disadvantages may be associated with deficits in sexual knowledge [9
] and a lack of social and decision-making skills [49
]. Associated with these issues is the fact that many individuals with intellectual disabilities obtain information on sex and sexual relationships via the Internet without any type of quality-based filter. This puts them at risk for abusive situations, exposing them to very limited role models on sexual behaviors and defining what and who is attractive or desirable [51
Regarding comprehensive sex education, to our knowledge there are no programs that specify what it should include and how it should be taught. Some studies propose contents to be included in sex education classes [52
], or they focus on social skills [50
]. Other programs are aimed at the adolescent population with intellectual disabilities and their parents [36
]. Other research has shown limited improvements [54
]. A review of existing programs revealed that they lack specific program outcomes, do not have a theoretical basis, do not involve members of relevant groups in the development process, and lack systematic evaluation [55
]. Guidelines for developing the content of these programs may rely on aspects that should be assessed when judging the sexual consent capacity of an individual with intellectual disability [56
]. The definition of capacity and the norms for its determination are controversial [58
]. In 1995, Ames and Samowitz [60
] suggested six criteria to be used to infer that a person with intellectual disability has sexual consent capability. These criteria served as a basis in the development of our program for the promotion of healthy sex. Keep in mind that capacity is a state and not a trait. It may change over time. At any given moment, an individual with an intellectual disability may be considered as being unable to have sex because of a lack of knowledge. Subsequently, if that individual receives enough training, counseling, and exposure to various social situations, the limitation can be overcome.
The six criteria proposed [60
] have served as basis to developing an updated set of criteria that emphasize desired behavior instead of non-desired behavior. (1) Voluntariness: A person must have the ability to decide voluntarily, without coercion, with whom he or she wants to have sex. In this study, we refer to this as ‘respectful of the dignity and rights of the other’. (2) Safety: Those involved in sexual behavior must be reasonably protected from physical (e.g., sexually transmitted disease) and psychological harm (e.g., unwanted separation from each other). In this study, we call this ‘safety’. (3) Non-exploitation: One should not take advantage of or use another person (e.g., someone with power or higher status) in a way that is inconsistent with willfulness. In this study, we refer to this as ‘symmetry’. (4) Non-abuse: Psychological or physical abuse should not be present in the relationship. In this study, we call this ‘mutual pleasure’. (5) Ability to say “no”: A person must be able to communicate “no” verbally or non-verbally, and withdraw from the current situation, indicating a desire to disrupt interaction. In this study, we refer to this as ‘mutual consent’. (6) Socially appropriate time and place: The person should be able to choose a socially acceptable time and place. In this study, we refer to this as “privacy”. Based on our experience, we added one more element to these criteria. (7) Affection: We understand affection as the knowledge, appreciation, esteem, and desire towards the other person, the shared experience, or toward wanting or loving that person.
In this paper, we offer the results derived from a program developed by the authors, based on these principles, as a framework for encouraging consensual and responsible sexual relationships among people with intellectual disabilities. This purpose is specified in the following objectives: (1) To analyze the sexual experience, behaviors, and attitudes towards sexual relations of adults with intellectual disabilities. (2) To implement an intervention program and obtain pre and post data on attitudes towards responsible sexual relationships. We also establish the following hypotheses: We expect to find (1) a diversity of orientations and levels of sexual experience, as occurs with the general population, and (2) pre-post improvements in the different domains of attitudes towards responsible sexual behavior.
In this empirical study, we offer evidence demonstrating the usefulness of a brief intervention program to improve the knowledge and attitudes toward consensual and responsible sexual relationships in people with disabilities. This intervention leaves aside personal beliefs or values towards sexual behaviors and their diversity, which we believe is basic to promote empowerment and self-determination [74
] as opposed to indoctrination towards what is “good or right” instead of “bad or wrong” in sexual behaviors.
From this point of view, the program maintained full respect for the various sexual orientations, desires, and preferences, as well as a means to satisfy them. In this study, we highlighted cross-sectional axes that must be present in a consent and responsible sexual relationship. Thus, any responsible sexual relationship should be based on mutual pleasure and consent, should take place in a context of privacy or intimacy, and should imply affection and symmetry. Further, any sexual relationship should also be safe and respectful to the dignity and rights of the other. If these cross-sectional axes are present, all sexual orientations and identities, as well as gender identities, and sexual patterns, including commercial transactions, provided that the individual with intellectual disability freely chooses to employ the services of sex workers, are considered responsible sexual relationships. We recognize that this last aspect is especially controversial, as the existing literature points out [75
Returning to the results, several findings are relevant. First, the higher percentage of same sex behaviors among the male participants, in contrast to the general male population, is noteworthy [80
]. What is also notable is the high percentage of people who have never had sex. These elements are, in our opinion, related. The greater access by men to sex and the greater overprotection of women could explain the high frequency of sex between men. It could be an issue of accessibility rather than one of sexual orientation. Alternative explanations could be related to the fact that the possibilities to show a variety of sexual expressions depend on the surroundings, attitudes, and behaviors toward them, and overprotective attitudes can make this fact invisible [69
]. In either case, these results should be complemented with in-depth studies with additional techniques such as focus groups or qualitative interviews [69
]. On the other hand, despite the traditional consideration of the “asexuality” of people with intellectual disabilities [6
], the data supports the need to work on these issues since it is clear that sexual relationships among adults with intellectual disabilities are anything but anecdotal.
Concerning the results obtained in the pretest, intragroup variety is broad, although medium to high knowledge of respectful sexual behaviors generally predominates. Nonetheless, such knowledge has a wide margin for improvement that justifies interventions such as the one in this study. In addition, intragroup differences reflect a significantly higher lack of knowledge in the low performance group in the majority of factors, regardless of gender. These results highlight the urgency of intervening with a population at risk of implementing unhealthy sexual behaviors.
The program has shown its effectiveness in improving the various components of responsible attitudes toward sexuality. While these improvements are not enough to eliminate the disadvantaged situation of the lowest performance group, they do contribute to substantially reducing the initial large difference. These improvements are compounded by the fact that the group globally improves in the pre-post scores in three of the seven factors. These results are encouraging although they will need to be replicated with a larger sample. Additional improvements are related to the time of application of the program, which should be extended.
Before concluding, we wish to consider some shortcomings that should be addressed in further studies. First, the sample is scarce, and the analysis should be replicated with larger samples before results can be generalized. The sample size has prevented the utilization of more complex factorial designs as well. Second, as a pre-experimental design was utilized, no control or comparison group was included. Consequently, the obtained changes could be the result of other features unrelated to the treatment. We should say, though, that length of the intervention and its contents makes it difficult to attribute the changes to variables such as the maturation of the participants or the exposure to learning experiences in this regard. However, future studies with comparison or waiting list groups, and with a clear commitment to intervene with those in a latter phase, are highly recommended. Third, the questionnaire measures attitudes and as such the cognitive, affective and conative components of sexual behavior. Further studies should focus on measuring actual behavioral change. As we know, actual behavioral change is key in any program of changing attitudes and is also the most difficult to achieve [83
]. Despite all of these shortcomings, we believe that the present study offers very encouraging results that support the relevance, timeliness, need, and usefulness of the intervention program.