Attitudes Toward Male and Female Sexuality Among Men and Women With Intellectual Disabilities.

Women & Health

ISSN: 0363-0242 (Print) 1541-0331 (Online) Journal homepage: http://www.tandfonline.com/loi/wwah20

Attitudes Toward Male and Female Sexuality Among Men and Women With Intellectual Disabilities Yueh-Ching Chou PhD, Zxy-Yann Jane Lu PhD & Cheng-Yun Pu PhD To cite this article: Yueh-Ching Chou PhD, Zxy-Yann Jane Lu PhD & Cheng-Yun Pu PhD (2015) Attitudes Toward Male and Female Sexuality Among Men and Women With Intellectual Disabilities, Women & Health, 55:6, 663-678, DOI: 10.1080/03630242.2015.1039183 To link to this article: http://dx.doi.org/10.1080/03630242.2015.1039183

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Date: 24 October 2015, At: 10:35

Women & Health, 55:663–678, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0363-0242 print/1541-0331 online DOI: 10.1080/03630242.2015.1039183

Attitudes Toward Male and Female Sexuality Among Men and Women With Intellectual Disabilities YUEH-CHING CHOU, PhD

Downloaded by [190.102.6.153] at 10:35 24 October 2015

Institute of Health and Welfare Policy & Research Center for Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan

ZXY-YANN JANE LU, PhD Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taipei, Taiwan

CHENG-YUN PU, PhD Institute of Public Health, National Yang-Ming University, Taipei, Taiwan

Studies comparing the sexual attitudes of men and women with intellectual disabilities (ID) have been limited. A mixed-methods approach was employed to explore attitudes toward sexuality among men and women with ID in Taiwan and to ascertain the disparities between attitudes among men and women with ID. First, fifty-six men and forty-four women with mild and moderate ID completed a face-to-face interview survey. After this, focus groups were conducted for men and women with ID. Results indicated that women with ID were more likely to have negative attitudes toward parenting and non-reproductive sexual behavior than their male counterparts. Qualitative data indicated that men and women with ID had different sexual attitudes and experiences and were subject to different expectations from people around them. Both men and women with ID had very limited opportunities to develop romantic relationships and a healthy sexual identity. Sexual rights awareness and practice should be matters of concern for this group of adults and women with ID in particular.

Received November 13, 2013; revised July 31, 2014; accepted August 18, 2014. Address correspondence to Yueh-Ching Chou, PhD, Institute of Health and Welfare Policy & Research Center for Health and Welfare Policy, National Yang-Ming University, 155 Li-Nong Street, Sec. 2, Peitou, Taipei 112, Taiwan. E-mail: [email protected] 663

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KEYWORDS ual rights

gender, intellectual disability, sexual attitudes, sex-


INTRODUCTION Sexual and reproductive health is certainly central to a person’s health (Sandfort and Ehrhardt 2004; The Women’s Sexual Health Foundation 2012), while an infrastructure promoting the well-being of persons with intellectual disabilities (ID) is needed. Many studies have indicated that people with ID have more limited knowledge of and more negative attitudes toward sexuality than people without ID (Galea, Butler, and Iacono 2004; Jahoda and Pownall 2014). An Australian study suggested that such attitudes differ between men and women with ID (Szollos and McCabe 1995). An American study (Bernert and Ogletree 2013) found that most women had negative perceptions of sex. The accessibility of information, social networks, and experience of healthy development of sexuality are limited for people with ID (Jahoda and Pownall 2014). Additionally, they face a high risk of sexual abuse, especially women with ID (McCabe, Cummins, and Reid 1994; Sequeira and Hollins 2003). Issues surrounding sexuality in Asians might not correspond with the knowledge, beliefs, and behaviors of Western society, while reluctance to discuss sexuality in Chinese culture and the lack of available information may contribute to decreased sexual function (Khoo 2009). Sexual self-concept, which is an indicator of sexuality, is reflective of how one views oneself. Au, Zauszniewski, and King’s (2012) study showed that resourcefulness is part of the repertoire of the individual’s learned behavioral skills and that it has positive associations with one’s sexuality, including sexual function, sexual self-concept, and sexual satisfaction. Thus, it may be hypothesized that sexuality of Taiwanese men and women with ID is greatly compromised. Taiwanese parents prefer to be silent about their own sexual lives and have more control over the sexual lives of their adult children with ID. Sexuality in people with ID is an issue between parents and professionals, and people with ID tend to be excluded from Taiwanese society (Chou and Lu 2011). Traditional attitudes that regard men as superior to women and prefer boys over girls still persist and are reflected also in a disparity in attitudes to men’s and women’s sexuality. For example, people in Taiwan are more tolerant of men than women having sexual relationships outside or before marriage (Peng 2004). Chen and Chang’s study (2011) indicated that parents of a son with ID usually provide more support to their son’s wish to be a parent than is the case for parents of a daughter. The voices of people with ID regarding sexuality often go unheard (Lesseliers and Van Hove 2002). According to Cuskelly and Bryde (2004),


Sexual Attitudes in Men and Women With ID

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attitudes to the sexual expression of men and women with ID should be examined separately. Servais (2006) indicated that research is needed to provide a comprehensive picture of sexual health in people with ID according to gender, level of ID, and living environment to develop effective evidencebased practices. Generally speaking, “rights to sexual health” among adults with ID have not been recognized by parents and professionals in Taiwan; such issues affecting this group of people have been viewed as “social problems” by researchers (Chou, Lee, and Chen 2006). Research data related to the sexual issues of these adults basically were collected from their parents or professionals instead of from this group of adults themselves (Chen and Chang 2011; Chu and Lin 2011; Lin 2010). This study is the first of which we are aware that attempted to give an opportunity to people with ID to voice their range of desires, knowledge, and experiences regarding their sexual health (Walmsley 2001). Differences in attitudes, knowledge, and experiences between male and female adults with ID were of particular interest.

METHODS A mixed methods approach was employed for this study, which was conducted between May 2012 and March 2013. The participants in this study were adults (aged 18 years and older) with ID, determined by medical doctors based on the individual’s IQ score and neurological examination results, mental health condition, self-care ability, communication skills, and maladaptive behaviors. First, a survey was performed to identify the sexual attitudes to people with ID. Following the survey, focus groups of these participants were conducted in the second stage to elaborate and interpret their attitudes toward sexuality. The regulations in the Research Involving Human Subjects Act in Taiwan, issued in 2011, specify that consent must be granted from legal guardians for research on people with ID. Ethical approval for this study was obtained from the Research Ethics Committee of National Taiwan University (IRB 201204HS001). Written informed consent was obtained from and signed by both the participants and their parents or legal guardians.

Methods Used in the Survey In 2013, the Ministry of Health and Welfare in Taiwan reported that 99,488 people were diagnosed with ID, 78,518 were aged 18 years or over; 18,838 were diagnosed with severe/profound ID, and 59,757 with mild/moderate ID; 10 percent out of this group used residential or day-care services. With consent of the managers of the service units and legal guardians of the service users with ID, the adults aged 18 years old or older with ID were


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recruited purposively through two institutions and four day-care service centers for people with ID in Taiwan. In total, 204 adults with ID were invited to take part in our face-to-face interview. Of these, 153 (100 with mild/moderate ID and 53 with severe/profound ID) completed our standardized questionnaires; the remaining 51 adults had difficulty in communicating with the interviewers. Due to a concern that answers of adults with severe/profound ID might not be fully reliable, only data completed by 100 adults with mild or moderate ID were included in the analysis of this survey study (representing 2 percent of all adults with mild/moderate ID using residential or day-care services in Taiwan). The demographic information included age, gender, level of disability, employment service use (e.g., sheltered, supportive, competitive, or none) and geographic location of residence (urban versus rural). A gender-specific version of the 28-item Attitudes to Sexuality Questionnaire (Individuals with an Intellectual Disability; ASQ-ID) assessed the attitudes of men and women with ID to sexuality (Cuskelly and Gilmore 2007). This ASQ-ID contains four domains, namely: sexual rights (intimate/sexual relationship, interest, intercourse, education, activity, and marriage); parenting; non-reproductive sexual behavior (homosexual relationship and masturbation); and selfcontrol (sexual desires and feelings). All responses had a 6-point Likert scale (strongly agree to strongly disagree), with higher scores indicating more positive or accepting attitudes. The questionnaire was completed by the participants themselves. To compare attitudes to sexuality of men and women with ID, male participants had the questionnaire started with subject term “men,” and vice versa for the female participants. For example, we asked male participants “Do you agree that with the right support, men with ID can raise well-adjusted children?” and replaced men for women when interviewing female participants. The original English version of this structured interview questionnaire (ASQ-ID; Cuskelly and Gilmore 2007) was translated into Chinese by the research team and then back translated from Chinese to English by two bilingual practitioners. A pilot test with six users was conducted at a day-care center in Taipei City. After the pilot test, some items in the ASQ-ID were revised to fit the Taiwanese local language context. In addition, the items were adapted to an easy-to-read language. For example, the item “Do you agree that with the right support, men with ID can raise welladjusted children?” was asked as “If men with ID, for example, it is you. With help of your parents and service workers, do you agree that you can have your own children, and your children can become good boys and good girls?” Four items1 related to masturbation in the ASQ-ID was described as “if you touch your private parts you feel nice”, if the participants had no idea about the meaning of “masturbation.”2 Additionally, to facilitate understanding the six-answer scales were first divided into agree or disagree and then following the participants’ answers, they were asked to indicate the strength of agreement or disagreement


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stated by one to three circles (three circles meant strongly agree/disagree, two circles meant moderately agree/disagree, and one circle meant slightly agree/disagree) drawn. If the participants only responded “yes” or “no,” the interviewers would ask for clarification. If their answers did not correspond to the questions asked, these interviews were discontinued and these questionnaires were treated as incomplete. Cronbach’s alphas in the four domains of the ASQ-ID were 0.57, 0.74, 0.71, and 0.77, respectively, for the 100 adults with ID in this study. The structured interviews were conducted by the study’s research assistants at the participants’ service units between May and December 2012. The interviews were in Mandarin or Taiwanese,3 depending on the participants’ spoken language.


Data Analyses The dataset was analyzed using the Statistical Package for Social Sciences (SPSS), Version 20.0 (SPSS Inc., Chicago, IL USA). To determine whether male and female participants had different characteristics, a cross-tabulation was used to compare their level of disability, occupation, residential area, and use of social services. Due to the small sample size, lack of normal distribution, and non-random sampling, the Mann–Whitney U test was used to compare male and female participants’ age and to determine whether differences existed between male and female participants’ attitudes to the sexuality of men and women with ID. Multiple regression analysis was conducted to examine the association between the participants’ sex and their sexual attitudes, and all of the participants’ socio-demographic data were entered into the regression model analysis as the controlled variables. We used R 2 to evaluate model fit.

Methodology for the Qualitative Component To illuminate the participants’ attitudes to sexuality among men and women with ID in a cultural context, we also conducted four focus groups for adults with ID with gender separate groups. Each group had two to three participants, eleven participants in total (six men and five women). The use of focus groups in this study as a deliberative and dialogic practice was intended to elicit insights into real-world problems (Kamberelis and Dimitriadis 2008). According to Kozol (1985), six or seven is generally considered the ideal size of a focus group, but when people diagnosed with ID are concerned, considerably smaller groups are necessary to promote quality dialogue and make it possible for every participant to voice his/her views. To explore the views of the participants comprehensively, a semi-structured interview guide was derived from the structured questionnaires (the ASQ-ID) of the survey described above. Such semi-structured interviews were conducted by the principal investigators (PI) and the full-time research assistant at the service


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units where the participants were available between December 2012 and March 2013. The interviews were conducted in Mandarin. An informed consent form was obtained from their parents or legal guardians again. Each focus group lasted for 2 hours and was tape recorded and later transcribed. Three of the male and three of the female participants were recruited from the survey study, and the rest of the participants were recruited from two parental organizations. All six male adults were in their 20s and 30s, had mild ID, and lived with their family. Five of them worked in a supported workplace (e.g., car wash company as a cleaner, dancing group as an assistant, computer company as an assistant) and one worked at a grocery store as a clerk. The five women were aged from 20 to 40 years, and three participants were using residential services (i.e., group home), and two lived with their family. Two of the latter three lived in the residential service and were under the custody of this facility. One woman had ID and cerebral palsy (CP), had been diagnosed with severe multiple disabilities, and needed a wheelchair, and another four had mild ID. Four women worked in a café/bakery store and a gas station (as a sheltered employment workplace) and one woman worked at a McDonalds in supported employment. Open-ended questions using participant-receptive language were stated slowly, and further explanations were provided if necessary to ensure their complete comprehension. The transcripts were coded and analyzed using interpretative phenomenological analysis (Smith, Flowers, and Larkin 2009) by the research team. First, the PI and one of co-PIs independently reviewed the transcripts at length to identify an initial set of themes. As themes emerged, the two researchers compared and reconciled discrepancies to ensure quality control of coding. They then brought their findings to the whole research team, including the research assistants, for further discussion. Themes that were found by the whole team were retained. The remaining possible themes were evaluated by all researchers to determine whether evidence was sufficient to warrant the inclusion of each theme. Themes were retained only if all researchers were able to reach a consensus on their validity. These themes were then listed under appropriate headings. All the themes and quotations presented have been translated into English and double-checked by all authors.

RESULTS Findings of the Survey Study CHARACTERISTICS

OF THE

PARTICIPANTS

IN THE

QUANTITATIVE SURVEY

All 100 participants were adults with a primary diagnosis of ID (Table 1). The mean of their ages was 31.1 years (SD = 8.0, range 18–63 years); 56.0 percent

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Sexual Attitudes in Men and Women With ID TABLE 1 Characteristics of Participants (n = 100)


Characteristics Mean age, years Mean (SD) Range Level of disability, n (%) Mild Moderate Employeda , n (%)b Yes No Residential area, n (%) Urban Rural Service use, n (%) Institution Day-care

Total (n = 100)

Male (n = 56)

Female (n = 44)

31.1 (8.6) 18–63

30.0 (9.2) 18–63

32.3 (7.5) 19–49

Z c /χ 2

p Value

−1.77

.08

28 (28.0) 72 (72.0)

15 (26.8) 41 (73.2)

13 (29.5) 31 (70.5)

0.09

.76

74 (74.7) 25 (25.3)

46 (82.1) 10 (17.9)

28 (65.1) 15 (34.9)

3.74

.05

45 (45.0) 55 (55.0)

24 (42.9) 32 (57.1)

21 (47.7) 23 (52.3)

0.24

.63

55 (55.0) 45 (45.0)

30 (53.6) 26 (46.4)

25 (56.8) 19 (43.2)

0.11

.75

a

Sheltered, supportive, and competitive employed. Missing, n = 1 (female). c Mann–Whitney U test. b

were males. Overall, the majority (72.0 percent) had moderate ID and used employment services (74.7 percent). We did not find significant differences between men and women with ID in age, level of disability, employment service use (yes versus no), service use (institution versus day-care), or geographic location (rural versus urban).

DIFFERENCE BETWEEN ATTITUDES TOWARDS SEXUALITY BETWEEN MALE FEMALE ADULTS WITH ID

AND

The women’s group showed less agreement on having the right to being a parent (p < .01) and on non-reproductive sexual behavior (p < .001) than the men’s group (Table 2), differences that persisted when age, level of disability, employment service use, residential location, and service use were controlled (Table 3). No significant gender differences in views on sexual rights and self-control were found.

Findings From the Qualitative Data In general, both men and women with ID had limited opportunities to develop intimate relationships and had no expectation of being parents. However, they all expected to have sexual rights as “normal persons” in society.

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TABLE 2 Comparing Attitudes Toward Sexuality Between Men and Women With Intellectual Disabilities (n = 100) Participants, Mean (SD) [Range] Men (n = 56)

Women (n = 44)

Za

99.6 (12.6) [71–133] 54.0 (10.4) [24–78] 40.7 (8.0) [18–52]

95.7 (9.7) [72–115] 47.0 (10.0) [18–70] 34.1 (8.5) [20–52]

−1.44 −3.10∗ −3.49∗∗

22.7 (5.6) [8–32]

22.7 (5.5) [12–36]

−0.25

Domains Sexual rights Parenting Non-reproductive sexual behavior Self-control a


∗

Mann–Whitney U test. p < .01, ∗∗ p < .001.

TABLE 3 Results of Multiple Regression Analyses or Variables Associated With the Four Domains of Sexual Attitudes Among Adults With Intellectual Disability (n = 100) Dependent variables: Domains Independent variables Adult sex (female) Adult age Level of disability (mild) Employment (no) Residential area (urban) Service use (day-care) Adjusted R 2 ∗

p < .05.

∗∗

1: Sexual rights

2: Parenting

3: Non-reproductive sexual behavior

4: Selfcontrol

−0.19 −0.29∗ 0.29∗

−0.34∗∗ −0.05 0.12

−0.38∗∗ −0.03 0.08

0.03 −0.37∗∗ −0.01

0.21 0.06

−0.15 0.23

0.05 −0.06

−0.14

−0.20

0.15 (p = .008)

0.22∗

0.20 (p = .002)

0.14 (p = .008)

0.06 0.12 −0.03 0.06 (p = .09)

p < .01.

CONTROLLED

BY

PARENTS,

THE

STAFF,

AND THE

SOCIETY

Regarding the topics of sterilization, masturbation, sexual intercourse, or having children, our participants were shy to talk about them. The participants all replied that their parents had never talked with them about these issues. Three men stated that they had never talked about masturbation or sexual intercourse with other people before the first stage of our survey interview. Yu4 (man, 26 years old) mentioned that masturbation could not be discussed in a class; it would make him feel insulted. Wei (man, 32 years old) replied, “This is a very private issue; parents do not talk about it or let us know about it. . . . I cannot talk about masturbation, otherwise I will be punished, and my father had warned to beat me because masturbation is not a healthy behavior.”

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In the women’s group, most of them had a vague idea about the two terms for “masturbation”2 used in the society. During the interview, Ya (22 years old) asked whether masturbation was bad for health. Sin (21 years old), a user of the residential service, visited her parents at weekends and said that she was told not to have a boyfriend, get married, or give birth to a baby without her parents’ permission. She had been taught by her parents that “a man and woman cannot get physically close to each other” and she continued and shared: “my mom says that I am not capable of taking care of myself. I would have to count on my brother the rest of my life.” Fen (30 years old), the only one participant who had a boyfriend currently, stayed at a residential service where she was told no sexual relationship without marriage and that she was not capable of raising a child. She stressed that her current interaction with her boyfriend has been fine—just holding hands but no kissing or touching each other. She said “We are very obedient to the rules. . . . We live in the same residential place, but boys and girls still live separately”. Lin (41 years old) also replied she would not have sexual intercourse with a man until she was married. The female participants tended to be disciplined not to develop intimate relationships and not to be involved in sexual activities. VIEWING PORNOGRAPHY ON THE INTERNET AS A LTERNATIVE S EXUAL A CTIVITIES

OR

LOVING

A

PERSON

IN

SECRET

All of the participants in this study said they wanted to have an intimate relationship but they did not know how. Yang (man, 34 years old) said that he liked one of his colleagues at work, but he did not have the courage to tell her. Almost all men said that they viewed pornography on the internet to satisfy their curiosity about sex. On the other hand, the women stated that they were not like men and were not so interested in sexual activities or watching porn. Lin and Ya said they loved their male teachers or male relatives in secret. Lu liked one of her colleagues in the same residential service in secret, but she was shy to talk about it: It made me feel shy that I answered the questions related to masturbation in the questionnaire . . . boys are not shy and are more courageous than girls. (Fen, woman, 30 years old) The boys in the accommodation are talking about that kind of . . . (sex). They also say they go to see porn, but I have never promised to go with them. (Ya, woman, 22 years old) One relative arranged a date for me with a man. But it did not work out; the man married another woman. . . . I like one of my cousins in secret,

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but he got married. . . . I want to get married, I need to find the right person first. (Lin, woman, 41 years old) I have liked my teacher at the gas station (workplace) for two years. But I am shy to tell him. (Ya, woman, 22 years old) She (Lu, woman, 40 years old) likes Zon (the name of a man), everybody knows. If she can have Zon as her boyfriend, she will be happy. (Fen, Lu’s colleague of workplace)


SUPPORT PARTNER

IN

GETTING MARRIED BUT HAVING DIFFICULTY FINDING

A

Liu and Lin’s (2004) study indicated that, compared with women with ID, men with ID were supported more by parents to marry and to have children, in order to continue the family name, according to the tradition. Chen and Chang’s study (2011) undertaken on people with ID in Taiwan found that parents tended to agree to the marriage of their child with ID but disagreed with their having a child. Zen (man, 32 years old) said: “My parents agree that I should have a girlfriend . . . whether they would agree to me getting married, I have never asked.” Two male participants in our focus groups had been told by their parents that if they wanted to get married, they are on their own to find partners. In contrast, Kung (37 years old) and Wei said that their families had suggested they could find a woman from South Asia to marry.5 However, except Fen, participants said that they were shy and did not know how to find a girlfriend or boyfriend: I have never had sexual experiences, never kissed a girl either . . . I am shy and not brave enough to get a girlfriend. (Zen, man, 32 years old) I do not have a girlfriend. . . . I cannot find one . . . Certainly I want to have one. (Yu, man, 26 years old)

WANTING TO HAVE THE SAME RIGHTS CONFIDENT ABOUT PARENTING

AS

“NORMAL” PEOPLE, BUT LESS

The male adults were angry that they were not equally treated by the law and society, and expressed that men with ID should have the same sexual rights as other people. Zen (man, 32 years old) said “the law6 is not fair to us. We are just like any human beings; why can’t we have children?” and Wei said: “They cannot force us to get sterilized.” He disagreed that forced sterilization should be obligatory for men with ID. All the male participants had difficulty developing intimate relationships with women. Both Kung (37 years old) and Zen (32 years old) were more concerned about


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their economic situation, and whether they made enough money to have their own family and raise their own children. Wei mentioned that he was also worried about whether he could have a healthy child. Kung said that if he wanted to have a child, his mother’s support is essential. Yu (23 years old) and Chen (26 years old) said that being a father was too remote a possibility to consider, particularly they had not yet been able to find a girl. In the women’s group, Fen and Lu agreed that women with ID were normal and could have children. But when they were asked whether they wanted to have their own children, Fen replied she could not rear a child because she had been told raising a child is not easy.


WOMEN’S EXPERIENCES

OF

BEING STERILIZED, RAPED,

OR

SEXUALLY ABUSED

All of the women in the focus groups had had negative experiences concerning sexuality in their life. Lu (woman, 40 years old, using a wheel chair) had been sterilized when she was 14 years old; Fen (30 years old) said she had been raped twice when she was in the fourth and fifth grades by her sisterin-law’s friend; Sin (21 years old) had been peeped on during her shower; Lin (41 years old) had been forcibly kissed in the workplace by her colleague; and Ya (22 years old) had been inappropriately touched on the bus. All of these female participants agreed that sexual protection lessons should be included as a priority in the sexual education of women with ID. The relation of these women’s experiences of abusive sexuality to their sexual attitudes, as analyzed above, needs to be examined by future studies with a large sample size.

DISCUSSION Comparing men and women, our quantitative data indicated that women were more likely to be in a disadvantaged position in terms of sexual identity. For example, women with ID presented more reserved attitudes toward rights of parenting and non-productive sexual behavior. Such findings were reflected in our qualitative data; the male participants were more likely to express their sexual desire than their women counterparts. Instead, the women shared their stories about sterilization and sexual abuse. This suggests that not only the sexual attitudes of men and women but also their sexual experiences were different. Moreover, the results reflected social values that imply that women should be passive and suppress their sexual needs (Hwang, Lee, and Chao 2010). It suggests that women’s bodies are objectified or commercialized (Chen 2006). In general, women’s bodies and their sexuality are scrutinized according to social norms, and women with ID face even more rigorous restrictions in Taiwanese society. For example, this group of women not only lose autonomy over their body but also, in


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contrast, become the target of sexual abuse, as the female participants in our study did. The results of our study also echoed the findings of previous studies (Chen and Chang 2011), that parents tend to treat men and women with ID different in parenting and non-reproductive sexual behavior. Two of the male participants had each proposed marriage to a foreign woman from a south Asian country, but none of the women participants had. This suggests that our findings on this sample with ID also reflected the social attitudes to men and women’s sexuality in general (Peng 2004). Moreover, most Taiwanese people consider masturbation to be sinful and unhealthy (Wang, Chen, and Wu 2005). The participants of this study shared this attitude and did not want to talk about masturbation. Consistent with previous studies (Chou and Lu 2011; Jahoda and Pownall 2014; Servais 2006), the findings of the current study found that the sexual needs of adults with ID, women with ID in particular, have been neglected or strictly controlled by their families and service workers. While contacting service managers and practitioners for our study, we also observed that many of these professionals were concerned about this group of people’s capability to develop intimate relationships. The professionals expected the level of disability to decide sexual capability of people with ID. While we argue that adults with ID have less positive attitudes regarding sexuality and reproduction compared to people without ID in the society, we also need to be aware of the gender difference; that is, women with ID might be more likely to be hindered in realizing their sexual rights to parenting and non-reproductive sexual behavior. Having a child with ID in Taiwan is viewed as a social problem and a stigma affecting the family (Chou et al. 2009). The parents not only worry that their son or daughter will not be capable of having a family but are also concerned about the transmission of ID to the next generation. No parenting support service has been provided to this group of adults in Taiwan (Chou and Lu 2011). The parents worried that the caregiving work of grandchildren became their burden if their son or daughter had a family; the lack of social support was the primary reason for their concern. This study suggested that the sexual life of both men and women was controlled by social norms and the people around them. On the one hand, the sexual needs of these adults with ID were similar to those of people without ID in the society; however, they were deprived of their rights to a sexual life. The implications of this study are summarized as follows. First, the impact of gender should be included in the advocacy for this group of people’ sexual rights and well-being. Second, effective strategies to develop intimate relationships should be considered in supportive programs and provided to this group of adults, both men and women. Third, while sexual education programs are provided to these adults, such programs also need to



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be provided to parents and professionals to improve recognition of the sexual equity needs of this group of adults. Interventions of preventing women with ID from being raped and sexually assaulted should be included in educational programs by schools and service providers. The limitations of this study should be considered as follows. First, due to the regulation of research ethics in Taiwan, the participation of adults with ID needed to have the permission of their parents or legal guardians who tended to be hesitated to agree since sexuality is still a social taboo. Thus, only purposive sampling could be used, which limited the generalizability of the findings, and the sample size was small so that some meaningful differences may not have been statistically significant. Thus, the representativeness of the samples is unknown and we might not have had sufficient statistical power to detect associations between gender and sexual attitudes as statistically significant, for example, in the domains of sexual rights and self-control. Second, we used the ASQ-ID, which was designed for use for non-ID people to measure the sexual attitudes toward people with ID. Thus, the scores of internal reliability of four domains in the ASQ-ID were modest, ranging only between 0.57 (sexual rights) to 0.77 (self-control). Additionally, a few items of the ASQ-ID had been rephrased to make them easily understandable for the participants with ID. All of these circumstances may have limited the accuracy of the findings. Third, sexuality issues among these Taiwanese adults were still controlled by their parents and the society, so that the items related to sexual rights might still be new for them. Our quantitative findings have to be interpreted with some caution as to whether the questionnaire items were understood and answered by the participants accurately, although the items of the ASQ-ID were translated into easy-to–read language for the interviews. Further, only those data collected from the participants with mild/moderate ID were analyzed, the data collected from the participants with severe/profound ID were not included in the analysis, thus limiting the generalizability of the findings. Fourth, this survey study was cross sectional and thus temporal; therefore, cause-and-effect relationships could not be discerned. Finally, social desirability/acceptability bias might have influenced the meanings revealed in qualitative data, which may be another limitation. As discussed above, sexuality is still a very sensitive topic in the society. However, the present study was a first attempt to collect data related to sexual attitudes from these adults’ perspective in Taiwan. To conclude, the rights to male and female parenting and non-reproductive sexual behavior were recognized differently by men and women with ID. Our study suggests that sexual rights awareness and sexual practices among these adults, women in particular, should be matters of concern for policy makers and practitioners.

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ACKNOWLEDGMENTS The authors thank all of the participants for their enthusiastic involvement during the interviews. Many thanks also go to these participants’ families, service workers, and managers of the service units (i.e., Xing-Jun Lin, WanPing Li, Mei-Xue Lin, Qian-Hua Wu, and Xin-Yi Lin) who helped us to have these adults take part in our interviews.

FUNDING


This study was funded by the National Science Council in Taiwan (NSC1002314-B-010-062).

NOTES 1. Four items were: “Masturbation should be discouraged for women with ID”; “Masturbation in private for women with ID is an acceptable form of sexual expression”; “It is a good idea to ensure privacy at home for women with ID who wish to masturbate”; “Masturbation should be taught to women with ID as an acceptable form of sexual expression in sex education courses.” 2. Two terms for masturbation are used in the society; one is common language and another is used in sexual education. 3. Taiwanese, like Mandarin or Cantonese, is a local dialogue and spoken language; all of these local languages are written in Chinese. Mandarin has become the official language in Taiwan since 1949. Research assistants of this study were fluent in both Taiwanese and Mandarin (representing the majority of the Taiwanese who speak Taiwanese at home and Mandarin in schools and in offices). 4. All participants’ names here are pseudonyms. 5. Women from South Asian countries, such as Vietnam, Thailand, or Cambodia, marry with Taiwanese men who are mostly old veterans, men with disabilities, or from low-income families; thus, these foreign wives (foreign brides) become the primary caregivers of the family, including for young children or older and disabled family members (Yang and Schoonheim 2013). 6. The Taiwan Genetic Health Law, introduced in 1984, states that anyone diagnosed with a genetic disease or mental illness may choose to be sterilized or submit their case to the Eugenic Health Committee for review (Article 10). For people with ID, such decision-making is usually carried out by their parents or spouses instead of themselves (for detail see Chou and Lu 2011).

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