Sexuality among Individuals with Disability - Research Paper Example

Sexuality, Relationship, and the Capacity for Decision-Making among Individuals with Disability Abstract The question of sexuality among the intellectually disabled is one that had remained unanswered over a long period, until the recent developments in research, which identified the constraints that such individuals face in expressing themselves sexually. There has been increased research towards both the attitudes of the caregivers and the individuals with intellectual disability. It is clear that social and environmental barriers keep the individuals with intellectual disability from expressing themselves. It is evident that such individuals are aware of relationship-based issues but they are hindered from venturing into their interests and desires by the attitudes of the caregivers and other individuals around them. This is especially the case among young individuals with intellectual disabilities, as they are still in thenurturing stage and thus expect guidance from their caregivers. In addition, the different views held by caregivers concerning sexual orientation may also hinder some of the individuals from expressing themselves, especially those with homosexual sexual orientation. In most cases, the caregivers and the society at large expresses a level of confusion in terms of the boundary between sexual autonomy among individuals with intellectual disabilities, and upholding the rights of such individuals through protection measures. Sexual knowledge and education programs have been less developed in terms of teaching individuals with intellectual disabilities how to utilize their sexual autonomy while ensuring that their rights are upheld. More research ought to be done towards development of learning practices that involve more interaction between the individuals with intellectual disabilities towards acquiring sexual knowledge, as opposed to the currently applied methods that are more classroom centered. Introduction Increased emphasis towards upholding the rights of individuals with intellectual disabilities has been observed over the recent few decades through espousing of changes in ideology and service delivery. A shift to person-centered ideologies has allowed for the identification of the right to establish intimate relationships, with the users of such intellectual disability services being allowed to identify the desire they hold to form different relationships. Nevertheless, the service providers and caregivers have always faced a great challenge in enhancing sexual autonomy in individuals with intellectual disabilities. Such challenges emanate from the existing culture of paternalism and conservatism and the ethical and legal uncertainty concerning the responsibilities and rights of the service users, caregivers, and the service providers. As much as one cannot provide clear answers to any questions that may arise concerning the issue of sexuality and relationships, there is need for all the stakeholders including the caregivers, the service users, clinicians, service providers, policy makers, and the researchers, among others, to acknowledge, discuss, and explore such an issue. This paper reviews some of the areas concerning sexuality and relationship among intellectually disabled individuals that have experienced intensive research. As much as relationship and sexuality educational programs currently occur in abundance, there is need for more systematic and rigorous evaluation of such programs in terms of their effectiveness in knowledge enhancement, and primarily to examine how such education impacts decision-making capacity and behavior. Caregiver Attitudes Relating to Sexual Expression It is important to note that the lives of individuals with intellectual disability occur within various social systems that interact, including peer systems, work systems, family systems, school systems, legal systems, and community systems. Thus, it is vital to understand the mores and norms that may influence sexual identity development of such individuals through providing them with or mitigating opportunities for such development. According to Dukes and McGuire (2009), the attitudes that the surrounding individuals may have in relation to the sexual expression of individuals with intellectual disability is a measure of inclusiveness and openness of the community to such individuals(McGuire, Daly, & Smyth, 2007). As such, communities that are more inclusive will tend to have a more positive attitude towards such expression of the intellectually disabled as they are allowing them the same platform of judgment as the rest of the members of the society. It is clear from research that most caregivers are still overshadowed with attitudes when dealing with the sexual expression of the intellectually disabled individuals. Case in point, in the explorative study conducted by Isler, Beytut, Tas and Conk (2009), in which the concerns, opinions, knowledge and attitudes of parents of children having intellectual disabilities, it was clear that such parents have great concern regarding their children’s sexuality(Isler, Beytut, Tas, & Conk, 2009). It is thus clear that the caregivers of intellectually disabled individuals have developed different attitudes towards the sexuality of such individuals given the level of sexual expression exhibited by such individuals and the held perception of such individuals among such caregivers and the community at large. It is important to note that most young people and children are shaped by the beliefs, behaviors, and attitudes of the caregivers. The same applies to the young people and children with intellectual disabilities. As such, there is a high need for development of an understanding of the systems of beliefs of such caregivers, as this would allow the redefinition of the services and education offered to the individuals under care(Katz & Lazcano-Ponce, 2008). Through enhancing awareness of the influence that a caregiver’s beliefs on the intellectually disabled individual, stakeholders can enhance the education and care practices of the individual under the care of the caregiver through individually oriented approaches. Nevertheless, as much as developing such awareness of the caregiver may be important in influencing their change of behavior, it is important to note that it may not be efficient to facilitate a change in their attitudes. It is evident that there is a weak relationship between the personal relationship of an individual and the stated attitudes(Gougeon, 2009). As such, there is need to develop a further understanding of the attitudes of the caregivers towards the intellectually disabled individuals on a general scope and thus evaluate the sources of such attitudes to employ intervention measures that would be directed at improving not just the behavior but also the attitudes of such caregivers. Different caregiver groups also hold different views concerning sexuality expression among the intellectually disabled individuals under their care. Case in point, caregivers who are paid for their caregiving services tend to have highly liberal views as compared to caregivers who are also family members of the intellectually disabled individuals(Murphy & O’Callaghan, 2004). The staff members working in the service providing institutions for individuals with intellectual, disabilities are also more inclined towards enhancing engagement between the service and the user in different relationships, contrary to most of the family caregivers who highly prefer low intimacy levels within the service-user relationships. It is clear, thus, that knowledge concerning the attitudes of different caregiver groups is increasingly growing, an aspect that is promising in terms of development of effective approaches in the supporting and educating of caregivers. There are also other factors that must be noted as being influential on the attitudes that the caregivers have developed concerning sexuality expression, which include culture, socio-economic status, ethnic background, and religious preferences, all of which ought to be explored to clearly understand the triggers of the attitudes that caregivers have developed(Dukes & McGuire, 2009). Attitudes of Individuals with Intellectual Disability towards Sexual Expression In line with promoting change in the service ideologies, there has been an increase in research directed at establishing the views of the individuals with intellectual disability themselves concerning sexual expression. In most cases, intellectually disabled individuals face a challenge in expressing themselves sexually as a result of environmental and social barriers. These individuals aspire to engage in sexual relationships with some even aspiring to become parents just like other individuals who are intellectually enabled. According to Healy et al. (2009), intellectually disabled individuals have an understanding of relationship-based issues such as responsibilities that come with relationships, companionship, parenting, privacy, and masturbation(Healy, McGuire, S., & Carley, 2009). The interviews conductedin their study showed that the individuals with intellectual, disability had little tolerance for homosexual behavior and premarital sex, and aspect that could be termed as response to social desirability or exposure to caregiver views that have an influence on the perception of such individuals. Most of the individuals with intellectual disability experience high levels of restriction from their caregivers when it comes to issues of intimacy and relationships. In the institutions providing care services to the individuals with intellectual disabilities, such restrictions are heightened where the users of such services are kept under monitoring and pressure not to engage in any form of intimate relationship or to keep such relationships as secrets(Galea, Butler, Iacono, & Leighton, 2004). Individuals would face negative reactions from the service providers and caregivers at any indication of intimate relationships including being chastised for kissing. According to Lofgren-Martenson (2009), any opportunities for young homosexuals to sexually express themselves are influenced by the behaviors and attitudes of the caregiving staff and their general environment(Lofgren-Martenson, 2009). As such, such individuals are barred from expressing themselves sexually as the upheld perception and attitudes of the caregivers towards their sexual orientation. On the other hand, homosexual individuals with intellectual disability may be exposed to exploitation upon expressing themselves sexually. This raises the question of safety among such individuals as unlike those who are intellectually enabled, these individuals may be exposed to issues that uphold their safety during sexual relationships, including negotiating for and even practically using condoms during intercourse. Such experiences bring out conflicting approaches towards balancing between sexual autonomy for such individuals and promoting such individuals from exploitation of their moral and legal rights. In line with the same, it is evident that the decision-making process among most of the intellectually disabled individuals is not collaborative. Most of their decisions concerning their sexuality, such as the use of contraceptives or sterilization, are made by other people including their caregivers, family members, or their health care providers, without involving them in any way through discussion(Lofgren-Martenson, 2009). It is this clear that individuals with intellectual disabilities are exposed to restrictive experiences concerning sexuality, as opposed to their desire for intimacy and relationships, and even parenthood and marriage for some cases. As such, there is a need for development of decision-making process that is more collaborative and inclusive to promote the sexual expression of such individuals. Improving Sexual Knowledge through Educational Programs As compared to the population at large, the sexual knowledge of individuals with intellectual disability is low, especially in areas involving sexual health, sexually transmitted diseases (STDs), legal issues, safe sex practices, and contraception(Galea, Butler, Iacono, & Leighton, 2004; Murphy & O’Callaghan, 2004). The available sex education, though not in-depth, has focused only on heterosexual relationships, thus leaving out the intellectually disabled individuals with homosexual sexual orientation. As such, there is need for proper consideration and inclusion of various sexualities in the curriculum of sexual education and for intensive research in bisexuality and homosexuality in line with intellectual, disability to meet the varying sexuality needs for the individuals with sexual disability. There is need for the establishment of policies and staff training in institutions that provide services for the intellectually disabled to allow proper handling of the heterosexual, bisexual, and homosexual individuals(Lofgren-Martenson, 2009). The staff members in most of these institutions are not well equipped to handle such issues of sexuality among individuals of varying sexualities. The obstacles to handling homosexual and bisexual individuals with intellectual disabilities include inadequate training, insufficient policies, coupled with the prejudice held by the caregivers or parents of the intellectually disabled and the staff members themselves. One cannot dispute the need for intensified sexuality and relationship education among intellectually disabled adults. Nevertheless, it is evident that the creation and delivery of programs for educating such individuals is not straightforward. There is need for consideration of various factors when dealing with education among individuals with intellectual disabilities, such as lower literacy, cognitive disabilities, facilitator discomfort when dealing with sexuality topics, and the values and attitudes of the facilitators(Healy, McGuire, S., & Carley, 2009). Such factors would affect the perception of the sexuality education among the service users, and the process of service delivery among the care providers. Nevertheless, educational approaches should be modified to allow understanding among the intellectually disabled individuals, about issues related to their sexuality. Increasing sexual awareness among intellectually disabled individuals would allow appropriate behavioral adjustments in issues involving sexuality and thus enhance sexual expression among such individuals. To increase such awareness, there are various objectives of educational interventions that Katz and Lazcano-Ponce (2008) propose in their study. These learning objectives include sexual activity, marriage, birth control, parenthood, STDs, being responsible for sexual behavior, and criminal and unacceptable sexual behavior(Katz & Lazcano-Ponce, 2008). It is without doubt that the ‘ignored curriculum’ problem has hampered knowledge transfer on issues to do with sexuality among individuals with intellectual disability. Gougeon, (2009) maintains that the learning process that involves informal and incidental contact between individuals away from classroom has been forgotten, and yet it facilitates the incidental transfer of sexual norms and sexuality aspect among peers who engage in information sharing and discussion(Gougeon, 2009). It is important to formalize such educational approaches in the education curriculum when dealing with sex and relationship issues, especially when such opportunities are not provided by the normal social structures. It is also important to note that as much as the vulnerability level of individuals with intellectual disabilities to exploitation and abuse is high, the experience that comes with relationships in terms of the tribulations and trials is important in the attainment of social-relational skills among such individuals. Since individuals who do not have intellectual disabilities learn more about relationships through their experiences, individuals with intellectual disabilities ought to be provided with the same opportunities. The challenge lies with drawing a line between the rights of sexual expression and protection from any form of harm that such individuals may be exposed toallowing sexual autonomy among intellectually disabled individuals is taking of calculated risk, an aspect that makes it dignified given that risk forms part of the day-to-day lives of all individuals(Gougeon, 2009). The major challenge that educators of individuals with intellectual disabilities may be exposed to when dealing with issues of sexuality and relationship involves teaching the skill involved in proper utilization of such autonomy and the process involved in cost-benefit analysis of individual actions and how one can learn from their experiences(Dukes & McGuire, 2009). In line with promoting sexual autonomy among individuals with intellectual disabilities, it is important for researchers to go beyond identification of deficits among the individuals with intellectual disabilities and other disabilities in general. Instead, they should promote studies that are keen to identify the competencies that are vital for the establishment of social relationships that are appropriate for such individuals such as emotional processing, social reasoning, theory of mind, and empathy(Murphy & O’Callaghan, 2004). Such research is vital to the development of interventions that are more targeted to promote skills of social communication among individuals with intellectual disabilities. It is clear that the already existing educational programs for sexuality and relationships among the intellectually disabled do not adequately meet their needs and thus rigorous evaluation of such programs and increased focus on specific social communication aspects should be emphasized. Conclusion To allow inclusiveness and autonomy among individuals with intellectual ability, self-advocacy plays a central role. Such individuals attain autonomy in different areas of their lives as a result of self-advocacy ability. To make self-advocacy real for individuals with such disabilities, it is important to effectively understand the experiences and processes that enhance proper self-advocacy. In addition, proper focus should be directed towards development ofeffective programs in relationship and sexuality education, with a clear consideration of the complexities and fundamentals that involvesexual expression and relationships. As much as a lot of research has been conducted in the area, rigorous and in-depth evaluation of outcomes ought to be upheld concerning not only information but also the use of such informationamong the intellectually disabled. As such, information acquisition is directly related to making decisions in such an approach. Case in point, it involves the use of information in ‘real life’. There is also need for more psychosexual and learning theoretical development models as they may offer an effective basis for the improvement and development of programs for intervention and for offering a systematic approach through which the working interventions can be easily isolated from the various interventions at disposal. References Dukes, E., & McGuire, B. E. (2009). Enhancing capacity to make sexuality-related decisions in people with an intellectual disability. Journal of Intellectual Disability Research, 53, 727–734. Galea, J., Butler, J., Iacono, T., & Leighton, D. (2004). The assessment of sexual knowledge in people with an intellectual disability. Journal of Intellectual Development Disability, 29, 350–365. Gougeon, N. A. (2009). Sexuality education for students with intellectual disabilities a critical pedagogical approach: outing the ignored curriculum. Sex Education, 9, 277–291. Healy, E., McGuire, B. E., S., E. D., & Carley, S. N. (2009). Sexuality and personal relationships for people with an intellectual disability. Part 1: service-user perspectives. Journal of Intellectual Disability Research, 53, 905–912. Isler, A., Beytut, D., Tas, F., & Conk, Z. (2009). A study on sexuality with the parents of adolescents with intellectual disability. Sex Disability, 27, 229–237. Katz, G., & Lazcano-Ponce, E. (2008). Sexuality in subjects with intellectual disability: an educational intervention proposal for parents and counsellors in developing countries. Salud Publications Mexico, 50, 239–254. Lofgren-Martenson, L. (2009). The invisibility of young homosexual women and men with intellectual disabilities. Sex Disability, 27, 21–26. McGuire, B., Daly, P., & Smyth, F. (2007). Lifestyle and health behaviours of adults with an intellectual disability. Journal of Intellectual Disability Research, 51, 497–510. Murphy, G. H., & O’Callaghan, A. (2004). Capacity of adults with intellectual disabilities to consent to sexual relationships. Psychological Medicine, 34, 1347–1357. Read More