Abstract
Sexuality is a valuable part of people’s lives, including people with intellectual disabilities (ID). Parents and social services personnel are significant parties for promoting the autonomy of people with ID regarding sexuality, although evidence reveals their actions tend to be in the opposite direction. Sexual attitudes do not emerge solely as personal or individual but evolve from interactions with others in a particular sociocultural environment. To explore the sexuality of people with ID, this study set out to understand the dynamic of people with ID, parents and social services personnel within the cultural context of Hong Kong. In total, 19 participants including people with mild ID, parents and social services personnel were recruited. Individual interviews were conducted, and the data were analyzed applying Interpretative Phenomenological Analysis and dramaturgy. Findings revealed the participants’ experiences, obstacles, and underlying feelings regarding the sexuality of people with ID, and the phenomenon, “not taking action” formed by all the groups. Chinese Confucian culture was revealed as the factor influencing the dynamic on the issues of sexuality. With respect to cultural expectations, government and social services agency leadership should take the lead to adopt an evidence-based sex education protocol.
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Introduction
The paper aims to discuss the role of social and cultural influence in the issue of sexuality and people with intellectual disabilities (ID). People with ID share the same human need for affectionate and intimate relationships as most other people [1]. A review reported that people with ID exhibited the same spectrum of sexual life as the general population; some preferred abstinence from sex, while others expressed a positive sense of engaging in sexual activity [2]. Parents and social services personnel have played an influential role in the sexuality of people with ID [2,3,4,5]. Social services personnel have the mission to promote their clients’ self-determination and self-advocacy. According to a study, social services personnel acknowledged people with ID do have the sexual human needs as other people do. However, considering the restrictions imposed by the agency’s regulations or social expectations, this acknowledgement was not reflected in their daily practice [6]. For parents of people with ID, beyond offering never-ending love and caring, parents were found to have unwilling and prohibiting attitudes on the issue of sexuality and their child with ID [7]. As a result, the institutional living in residential care settings, or the restricting operational rules of the health care model, and the parentally imposed controls, were found to incorporate together and have notably curtailed the sexual needs of people with ID [8]. People with ID were found to not enjoy the same level of autonomy regarding their sexuality as other people [9].
The Chinese Sex Culture
Sexuality covers a broad and complex cultural terrain involving sexual identities, personal beliefs and behaviors, and interaction with social organizations [10]. As one of the major influencing cultures in the Eastern world, Chinese culture is comparatively conservative regarding sexuality [11]. Evidence demonstrated that East Asian sexuality differs significantly from Western norms on dimensions, ranging from accuracy of sexual knowledge to sexual experience, and sex guilt may be one mechanism impacting East Asians’ sexual desire [12]. A recent review revealed that Chinese students studying abroad generally have restrictive sexual attitudes and inadequate reproductive health knowledge [13]. Another study conducted in China found that traditional Chinese attitudes potentially impaired participants’ ability to establish positive understanding about sexual intercourse, premarital sex, and knowledge to protect themselves from sexually transmitted disease [14]. Chinese people value fertility, but couples seldom discuss sexual matters with each other [15]. Hong Kong can be regarded as a metropolitan city where the East meets the West, an international hub built on a mixture of cross-cultural experiences from all around the world. A qualitative study, however, highlighted Hong Kong Chinese people’s rigid definition of sexual behavior, confining sex to heterosexual sexual intercourse, while not considering kissing, hugging, and caressing as ‘sexual’ [16]. In contrast to their international peers, Hong Kongers do not openly discuss or express sexuality [17, 18].
Social Interactionism and Sexuality
The social interactionism perceives “individual” and “society” as interdependent [19]. Individual sexual attitudes do not emerge solely as personal but evolve from interactions with others in a particular sociocultural terrain [20]. People’s experience of sexuality can be understood as patterned constellations of language and action, convention, and expectations. Society produces cultural scenarios that prescribe what and how sexual conduct and its forms: with whom one might engage with sexuality, why and when, and even what one might expect to feel [21]. Moreover, human emotions are believed to be a contextual response, mediated by cognitive processes that provide meaning or value to social cues [22]. In other words, human attitudes and feelings in relation to sexuality are reactions within a particular sociocultural environment. Given this context, the first author of this study interviewed three groups of participants: people with ID, parents, and social services personnel. Based on the interactionism perspective, this paper attempts to explore the experiences and attitudes about sexuality of people with ID, and investigate how Chinese culture influences the dynamics of the three groups of participants in the handling of the sexuality of people with ID.
Methods
Analyzing the sexual experiences of individuals with ID in a Chinese cultural context can be intricate. This exploration and analysis should encompass a comprehensive investigation into personal experiences, as well as the interactions between individuals with ID, their parents, social service personnel, and the prevailing cultural values. The mono-method has its limitations in comprehensively grasping this multi-faceted phenomenon. In contrast, a pluralistic approach permits a more profound engagement with participants' experiences and the significance they attach to them. This approach is instrumental in generating multiple, intricate, and diverse interpretations of the phenomena in question [23, 24]. This study adopted an across-method pluralistic approach to provide a dual lens to explore the lived experiences of the three groups of participants, and to investigate the meanings given to these experiences through interaction among each of the parties within the same cultural terrain. [25, 26].
The across-method pluralistic approach of this study is composed of interpretative phenomenological analysis (IPA) and dramaturgical perspective. These two independent but interlinked interactionist approaches have advantages in studying sexuality [27]. IPA is a qualitative psychological approach for investigating personal lived experiences. Smith and Osborn [28] noted that formulating a schedule leads IPA researchers to explicitly consider what they expect the interview to cover, and to identify any potential difficulties they may encounter regarding question wording or sensitive topics. A key advantage of using IPA in this study is that it allows the researchers to examine and interpret participants’ unique understandings of their roles and experiences in addressing the sexual needs of people with ID. Dramaturgy, a sociological perspective, utilizes the metaphor of the theatre to comprehend social processes and human interactions [29, 30]. Goffman addressed the influence of rituals on social interactions [31], etiquette for behavior in public places [32], and how actors use frames to interpret reality and organize experience [33]. Pluralism asserts that human experience is influenced by a multitude of factors, such as emotions, familial norms, cultural values, and more. Through the application of an across-method pluralistic approach, this study aims to offer valuable insights by providing an interpretative phenomenological understanding of sexuality at the individual level within each group of participants. Additionally, it delves into the dramaturgical understanding of the dynamics among these groups and explores how cultural values influence these dynamics.
Participants
This qualitative study involved the interview of three groups of participants. For the group of people with ID, participants were required to be the mild grade of ID, have no physical disability and at least at the age of 18. For the parents’ group, the selection criteria were having an adult child with mild grade of ID (have no physical disability as well). For the social services personnel, to meet criteria for participating in the study, the person should have at least 3 years of experience in the field working with adults with ID. Recruitment was restricted to Chinese people to facilitate investigation of the influence of Chinese culture on individuals’ concepts of sexuality [34].
Data Collection
The study received approval from the College’s Human Research Ethics Committee (REC2019049). Participants were recruited via non-governmental organizations (NGOs) in Hong Kong, but only two accepted the invitation to take part in the study. Prior to the interviews, the first author provided three groups of participants with information about the study and a consent form. Given the sensitive nature of the research, interviews were held in a private room. The interview for people with ID had taken reference to the advice for studying vulnerable populations [35]. One person with ID signed the consent form witnessed by his brother, while the rest were all witnessed by the case social worker. People with ID were permitted to be accompanied by a family or social services staff if they requested. In addition, the first author arranged a female clinical psychologist with experience working with people with ID to provide support and counselling to any female participant, if needed. Interviews lasted between 50 and 75 min and were audiotaped with participants’ consent. Participants were given an identifier, (e.g., ID1, ID2 etc., for people with intellectual disabilities, S1, S2 etc., for social services personnel, and P1, P2 etc., for parents), to ensure their confidentiality.
Face-to-face semi-structured interviews were conducted by using the “funnelling technique”, which provided a compass for the qualitative dialogues from general discussion to more specific topics [36]. This approach provides the necessary structure, but also allows the emergence of rich data, while ensuring consistency between interviews [37]. Initial questions enquired about participants’ daily lives, evolving to more specific questions related to the experience of romance, or the sexual needs of people with ID. This approach enabled the authors to glean a more holistic understanding of all participants’ experiences in addressing the sexual needs of people with ID.
Data Analysis
The audiotaped interviews were transcribed verbatim to preserve the details of the information. Data analysis was conducted using a three-stage approach [28]. Stage 1 comprised readings of the transcribed data to make a holistic understanding of the participants’ experience. In Stage 2, the first author re-read the transcripts. With emerging themes identified, the first and second authors, who were both bilingual sex therapists, together confirmed the core content of each theme. In Stage 3, an organized thematic structure with supporting verbatim quotes was translated to English descriptive labels. All the labels were finally getting consensus by joint meetings attended by all authors. In addition, to ground in the pluralistic approach, two layers of investigation were applied. First, at the individual group dimension, IPA assumes the researcher’s central role in analysing and interpreting participants’ experiences and intuitively probing for meanings by mining between the lines to obtain deeper interpretation [38, 39]. Second, from the dimension of studying cross-group dynamics, the dramaturgical perspective believes social interaction has a dynamic, negotiable, yet undeniably inherent form that those involved may not be consciously aware of [40]. Hence, the analysis borrowed the language of dramaturgical theory to explicate the nature of the challenges and the unconscious interaction among the three groups of participants.
Results
Table 1 provides general background information about participants. For social services personnel, four female and three male staff, an assistant trainer, trainers, social workers, a nurse, and a sheltered workshop manager, participated in the study. Five worked in day services and two in residential services. Three participants had more than ten years’ experience working with people with ID, and the rest had 4–5 years’ work experience. All participants completed their education and professional training in Hong Kong, but none claimed any formal training in sex therapy or sex education.
For people with ID, three participants were male, and two females, who were between the ages of 21 and 50 years old. Two participants were employed in the catering industry, while others received day training services or attended vocational training. One participant lived with his parents, and the others lived in supported hostel accommodation provided by a social services agency. Three participants reported having a romantic relationship with a member of the opposite sex.
For the parent group, five of them were mothers, one a father, and one the child’s aunt and primary carer since the child’s birth. One of their children was 18 years old and attended a special school; the others were over 20 years old and took part in various daily activities, including attendance at a day activity center and employment in the open job market. Participants reported that all children with ID undertook daily living activities and travelled to their school or workplace independently. In other words, at the time of the interview, no participant was required to provide intensive daily care for the child with ID.
The Themes: Experience and Opinions, Restriction and Concern, Underneath Feelings
Participants of three groups talked about their experiences and opinions regarding the sexuality of people with ID. In the latter part of the interviews, people with ID talked about the restrictions they encountered when expressing their sexual needs. The other two groups, on the other hand, discussed their concerns about addressing the sexual needs of people with ID. Moreover, by further analysing the dialogue of the participants, special feelings of the three groups were uncovered.
Theme 1: Experience and Opinions About the Sexuality of People with ID
Under this theme, two salient variations of responses emerged. First, people with ID mentioned alike knowledge and experiences related to sexuality to their peers without disabilities. As one participant said:
We had a sex education class at school. I also learned something about it by browsing the internet. I know if I make love, I will have a baby. But I also know that using a condom can help. (ID2)
People with ID also shared their experiences of dating or watching sexual materials like most teenagers:
I had dinner with a girl many years ago. Afterwards, we went to a shopping mall after which I accompanied her home. (ID1)
The boy said that he loved me made me so happy. We did our job in the same sheltered workshop. But I did not keep up our relationship because he wanted to touch my body. Mother said it was no good. (ID4)
At night-time, I used my handheld to watch a porn video. I think it is ok. They are (roommates of the hostel) all asleep, no one would notice that. (ID3)
My roommates invited me to browse a porn website together. And I also like to look at pictures of beautiful girls. (ID 5)
Sexual desire and the need for intimate relationships are widespread human needs. Social services personnel and parents had similar opinions on the normality of people with ID to have such needs:
I sometimes see a male client with an erection. Yes, it is a bit embarrassing. But it is normal. (S2)
It is common to hear people with intellectual disabilities say they love or like someone in my service unit. (S7)
It is normal to have sexual desires and so did my son. (P6)
I agree people have the right to go on a date. (P7)
Theme 2: Restriction and Concern on the sexuality of people with ID
The dialogue delved further to explore participants’ reactions when they encountered people with ID expressing their sexual needs or desire for a relationship. People with ID clearly expressed their sexual needs and desire for a romantic relationship. However, they complied with restrictions imposed by parents or social services personnel.
I like the girl. But my parents said no. They said the girl would not treat me well. And I do not like to make my parents angry. I think the best way is to stop it (the relationship). (ID1)
A boy touched me before, I felt so good [the interviewer noted a coy smile]. But dad did not like him. My parents said that I should not be in a relationship. But my brothers have their family and baby. I feel lonely when I see them. (ID2)
The boy also kissed me. But you know, staff did not allow this! (ID2)
I want to date a girl. But my parents and elder sister said that a man should shoulder the family expenditure. However, I cannot do this, so I should not go on a date. (ID3)
Getting a date is just so cool and happy. I want to be in a relationship. But I feel lonely that I have no partner. And I should not do this (sexual act). If staff discovered that, they would scold me, and I would die. (ID4)
Social services staff, on the one hand, articulated their intention to promote the autonomy of people with ID regarding sexuality; on the other, they mentioned their concern, which was thwarted by parents’ and co-workers’ conflicting views, and antagonistic agency policies:
Parents hold the power to permit people with intellectual disabilities to have a romantic relationship. Me and the person with intellectual disabilities could not reject them. (S6)
I would like to negotiate with parents, but I have never had the experience that management would grant us the power to do so. It is beyond the existing policy about sex education or sexual issues. (S4)
Frontline staff hold different views. They often prefer to prohibit clients’ sexualized behavior or expressions. Some colleagues (frontline staff) think that permitting people with intellectual disabilities to masturbate or view erotic media encourages immoral notions and uncontrolled behavior to rampage in the center (S5)
Senior staff always think that we do not know how to handle clients’ sexual issues. And because of the hierarchal organization, we have to comply with their instructions. (S1)
We seldom attend training for sex education. Regarding sexuality, the agency’s stand is very important. And honestly, the agency I work for is very conservative about this. (S2)
Parents’ concern could be articulated as a formula: allowing their child with ID to have a sexual relationship equates to having descendants, and having descendants equates to continuing the family “tragedy” about nurturing a person with disabilities. The response to these possible eventualities was the same: the story must end here.
If my boy says, “I want to get married”, I will die! What if he had a baby? It creates another pain for my family. Why would we allow the trouble to have another disabled generation? I don’t think that his child would have the good fortune to have upward mobility. I admit I am holding an important life experience away from him. But sorry, I need to do it. (P1)
My boy keeps saying that he wants to have a girlfriend. Sorry, that is not acceptable. Actually, who would love my boy more than me? (P6)
Do you know how painful it is to raise a child with intellectual disabilities? Marriage for him? Sorry, the story should stop here. (P5)
Special Feelings Uncovered in the Three Groups of Participant
Reviewing the detail of participants’ dialogue, in interpretative phenomenological perspective, the ‘onion skin layers’ overlying their significant lived experience were peeled away [41]. This study revealed three underlying feelings: struggling, resignation, and shame, expressed by people with ID, social services personnel, and parents, respectively. The feelings of struggle experienced by people with ID reflected the ambivalence of their situation. It was hard for them to deny their sexual needs and desire for a relationship. Their lives, however, were under the surveillance of social services personnel and parents, resulting in suppressing their desires, and complying with the restrictions imposed by staff and parents.
For social services personnel, building clients’ sexuality capacity was within the scope of caring practice, as well as advocating the significance of self-determination [8]. However, they often acceded to parent's wishes and seemingly failed to proactively promote the autonomy of people with ID to have a normal sexual life. In addition, inconsistent views among the working team, and more restrictive attitudes imposed by senior management, created obstacles to promote right of sexuality for people with ID within the work setting. This unfavorable working context eventually generated feelings of resignation that were found among the members of the social services personnel group.
Lastly, shame was the underlying feeling found in the parent group. Shame can be viewed as deep personal suffering associated with stigma [42]. In the Chinese community, it is not uncommon to notice societal discrediting towards family with member with ID [43]. With the shame feelings associated with that circumstance, parents of a child with ID could potentially experience difficulty to engage in normal social interaction [44]. Through the dialogue with parents, they did not accept their child with ID having a sexual life or marrying as positive developmental milestones; rather, they perceived as prolonging their pain and attracting further shame.
Discussion
This qualitative study explored the views about sexuality of people with ID. Three groups of participants: people with ID, social service personnel, parents with adult child with ID were interviewed. Through the lens of IPA, these three groups of participants were found to have the corresponding feelings: struggling, resignation, and shame. Having these negative human emotions, however, none of the three groups of participants had taken specific countervailing action, or proactively advanced people with IDs’ autonomy regarding their sexuality. Is “all not taking action” a coincidence? Would there be a hidden force uniting the three groups of participants and influencing this tripartite dynamic not to take any action together?
Dramaturgical Perspective and Tripartite Troupe
The dramaturgical perspective might help to resolve the above questions. This perspective considers people’s engagement in social interactions as aiming to avoid embarrassment or embarrassing other people. Goffman created a theatrical metaphor: people perform in their daily lives as a theatrical performance based on cultural values, norms, and beliefs [29]. There is a front region where individuals perceive themselves as actors on the front stage in a theatre to create a specific impression in front of other people [45]. Front stage behavior reflects internalized norms and contextual expectations for people’s behavior that can be both highly intentional and purposeful. It is also habitual or subconscious, follows a routinized and learned social script shaped by cultural norms [46]. The social script is an intrapsychic map guiding people how to think, feel and behave that shapes their lifestyle [47]. The social script is likely to be learnt through transmission at the overt and conscious level, but also the covert, subconscious, or even unconscious levels of communication [48, 49]. In other words, the social script can be an invisible power influencing individuals’ thinking and behaviors in everyday life.
Further on the analogy of invisible power, the three groups that participated in this study have collaborated to perform a “Puppetry Front Stage Show” (Fig. 1). This puppetry show is an analogy that each of the parties serves as a puppet controlled by the invisible power, the puppeteer, i.e., the overarching cultural values. The puppets are controlled by transparent wires or strings (shown as dotted lines in Fig. 1), a metaphor that the tripartite performance is an unconscious or habitual act. The overlapping circles reflect the interconnectedness of the three parties like a “tripartite troupe” naturally performing the show, at the same time unwittingly reacting to the repression sex culture, or a conflicting social situation.
Sex Culture and the Sense of Camaraderie
Social interaction accentuates unspoken, mutually reciprocal obligations between parties [50]. Sex remains taboo in Hong Kong [18]. This doctrinaire sex culture does not promote a good habitat for nurturing open expression of personal sexual needs. The experience of a female participant with ID reflected this taboo:
I asked my mother how a male can put sperms into a female’s body and finally how it grows into a baby. And why I should have a period. But she just smiled and did not answer my question (ID4).
There was a lack of evidence-based sex education programs in Hong Kong available for the tripartite troupe [51]. Discussion of sexuality was also found to evoke awkward or embarrassing feelings in the social services context [52]. Under this social circumstance, the tripartite troupe is believed to build a sense of camaraderie to not open the can of worms, which was the taboo and the unfamiliar matter to discuss. They chose to keep their voice at the minimal volume on the stage.
Chinese Guanxi and the Show
The sense of camaraderie among the tripartite troupe can also exhibited by the concept Guanxi. Guanxi is not just about relationship, but part and parcel of the Chinese history and culture that cannot be completely defined and comprehended by the western philosophy [53]. It is not a bribe but an exceptional type of friendship [54]. Uniquely situated into China’s distinctive culture, guanxi offers an emotionally sensitive, network-based form of resource allocation [55]. Guanxi is reciprocal social network that should not be narrowly evaluated in material or monetary terms and was found to have a significant influence on social work practice in Chinese society [54, 56]. To maintain positive guanxi, the tripartite group did not assert the sexuality rights and autonomy of people with ID. “Not protesting” can be regarded as the give-and-take for securing and maintaining positive guanxi for the tripartite group in this study. Specifically, for social services personnel, not bargaining with colleagues or senior management can be viewed as a spontaneous act in an office context. As one social services personnel said: “Talking about sex is too complicated. It possibly embarrasses senior management. I do not feel that it is right to cross the line (S4)”. In these circumstances, the return for that spontaneous act is a harmonious working environment and receiving a favor from management in the future. For people with ID, they complied with the restrictions imposed by the social services personnel. As one of the people with ID said: “Dating? If staff discovered this, they would scold me. I would choose not to break the rule (ID2)”. This kind of compliance contributes to the maintenance of Guanxi with social services personnel, with a potential reciprocal return for people with ID to face fewer restrictions in other areas, or to gain more opportunities than others to participate in social activities. As a reciprocal relationship, social services personnel also give people with ID favor, for example, they may “turn a blind eye” if they find a service user masturbating in their hostel bedroom or use a gentle tone to ask a person with ID not to browse porn websites in the hostel living room.
Guanxi is also the social etiquette of interpersonal obligations [54]. Autonomy regarding sexuality is the least concern of parents of people with intellectual disabilities in Hong Kong [55]. Not confronting this “least concern” may be regarded as social services personnel care about the guanxi with parents of adult child with ID. In daily health care and social work practice, there are many other tasks, for example, vocational rehabilitation, lobbying for more residential quotas, etc., to work on. The social services team needs to establish good guanxi with stakeholders to ensure they can find enough parents willing to support or to take part in those tasks.
In the puppet show analogy, the sex and guanxi cultures control the tripartite troupe. Together they do not protect people with IDs’ autonomy regarding sexuality. “Not protesting” is an offering to each other that illustrates the dynamic in guanxi that echoes the concern for harmony in Chinese conflict management. A harmonizing process in guanxi has an art-orientation for resolving conflicts in Chinese culture. The tendency to avoid face-to-face conflicts and value harmonious interpersonal relationships is deeply rooted in the mindset of Chinese people [56].
Face, Filial Piety and the Show
Face and filial piety are another two puppeteers illustrated in the middle of Fig. 1. Many cultures have a notion of face, but analysis of face and Chinese must be grounded in the relationship or relation network [57]. The Chinese expect to have an admirable reputation and honor face [58, 59]. In traditional Chinese society, individuals would either strive for a respectable and admirable social position to “gain face”, or “protect face” by not “losing it”. To minimize the opportunity of losing one’s face, one of the common strategies is to behave according to the social norm [60, 61].
Filial piety is an important Chinese social norm; a classical Chinese saying is: “Among all virtues, filial piety is the first”. Filial piety is the core pillar of Confucian ethics that legitimates the Chinese patrilineal, patrilocal, and patriarchal family system [62, 63]. Filial piety accentuates obedience and submission, marriage, and procreation [64]. In Chinese society, marriage is not a union of two individuals, but a union between two families. One of the purposes of the union, is procreation, and to ensure that ancestors might continue to receive honor from having male descendants [65, 66]. This cultural norm about filial piety implicitly stigmatizes single adults. Being a single with no male descendant, resulting in losing the face of self, his or her parents, and the whole family [67]. Moreover, Chinese parents wish their child to become a “dragon”—a well-adjusted and achieving person [68, 69]. As one mother said: “All parents wish their children to have a brilliant future. It brings face to the family. I am that type of person…. But sorry that my son cannot achieve this (P6)”. Failure to fulfil these expectations elicits facelessness for the whole family in a hierarchical society [70]. Parents’ accounts of this study clearly reflected the ideology that incorporates sex with procreation. People with ID have limited cognitive functioning. It is extremely difficult for them to overcome the restrictions imposed by stigmatizing attitudes in society, to get married and to continue the family bloodline, and to be a “dragon” in comparison to other people. Eventually, Chinese families with a member with ID experienced a specific and extremely shameful emotion [42, 70].
The face and filial piety social scripts compose another plot for parents and people with ID. Based on patriarchal tradition, Chinese parents exercise their authority to demand their child, whether they have disabilities or not, exhibits self-control and discipline [42, 71]. This action is to avoid the embarrassment of a losing face performance in the front stage [29, 72]. As a mother expressed: “It is so embarrassing if my son tries to hug someone. The best way to handle this is to deal with it at the beginning by not allowing him to do it (P7).” Chinese boys or girls should also not to perform any act that would, or have the potential to, damage the face of the family [44, 71]. As a person with ID, the “best way” to protect the face of the family, and to fulfill the filial duty, is to adhere to parental dogma, even if doing so contradicts personal wishes and desires. As illustrated in the findings of this study, people with ID surrendered their desires and no individual with ID dared resist their parents’ restraints. They simply complied. Corresponding to the idea of impression management, the child with ID co-plays the puppet stage performance as a good kid to save the face of the family.
An Equilibristic and Harmonic Show
The analogy of sex culture, guanxi, face and filial piety as puppeteers, represents a tragedy that depicts all involved parties as victims of destiny. The underlying feelings of the three parties: resignation, struggling, and shame, can be categorized as negative emotions generated by the cultural script. There remains, however, a positive side of the tripartite puppet show. The tripartite troupe collaborates in a stage performance complementing the theme of equilibrium and harmony, a core philosophy in Chinese culture.
The sacrifices in the co-play exhibit family harmony, family closeness, congeniality, cooperation in the workplace, and mutuality. Among the dimensions influencing social harmony, harmony and cohesion within a family are the most critical in Chinese society and could be regarded as the major indicators of a harmonious Chinese neighborhood [73]. People with ID struggle for their autonomy, but are “rewarded” by praise for being a good child. They do not bargain with social services staff or parents which further contributes to harmony in the social services unit and protection of the family’s face. Keeping the can of worms sealed reduces conflict and dilemmas for the family, although it suppresses the right of the person with disabilities to enjoy the positive experiences of sexuality and intimate relationships. Following the Confucianism culture, it is a crucial and positive act to hunt for a harmonious family life.
Chinese people have highly valued equilibrium and harmony since ancient times [74, 75]. Confucianism directs people not to pursue a perfect scientific model for “absolutely” resolving contradictions or conflicts [76, 77]. For social services staff, keeping their resignation at a personal level enables them to benefit from having good guanxi with all stakeholders. This reaction further promotes the core value of maintaining harmony at the organizational level of the social service agency.
The puppet show analogy is not to imply that the “puppets” are merely dolls with no free will. If individuals are constrained by sociocultural interaction to present themselves in their performance, the examination of individuals’ development through Goffman’s dramaturgical lens is not a cynical viewpoint [78]. As a symbolic interactionist, Goffman, in fact, asks how people present themselves within the domain of social interchange governed by cultural rules and conditions [29]. This article examines the functions of the dynamic of the three groups of participants in the context of Chinese cultural norms on sexuality. It further reveals the alliance through respecting cultural expectations and creating an equilibristic and harmonic mutual network, which is the priority and end goal of the entire sociocultural environment.
Research Implications and Limitations
Transforming cultural beliefs is a massive task that cannot be accomplished in one move. The tripartite harmonic status quo does not imply no action should be taken to promote the autonomy of sexuality for people with ID. With careful consideration of the cultural context and the subtle feelings experienced by all parties, the government and social service agencies should lead a policy change. Research demonstrates that prolonged exposure to sex education enhanced participant’s misconception about sexuality [79]. Hence, systematic and regular sex education should be provided to all parties. For people with ID, meaningful life experience may help them to feel psychologically empowered, be capable of determining their lives [80]. With respect to the restriction imposed by the sex culture, social services personnel may help people with ID engage in hobbies, meaningful activities that will lead to enhance their confidence, skills, and self-esteem [81]. Anti-stigmatization is also essential and social service practitioners should empower families and people with ID as competent, contributing members of society [44].
The sample size for this study was relatively small. However, it was exceedingly difficult to recruit participants for a face-to-face interview during the Covid-19 pandemic. The cross-sectional and convenience sampling design might influence the understanding of participants’ experiences. All participant parents were recruited through a parent resource center in Hong Kong whose experiences may differ from parents receiving different services, and experiences may vary according to the experience of social services and community linkages. Another key limitation is the gender and role disproportionality among participants. Only one father participated in the study; thus, fathers’ voices remain unheard. This is a common issue in research of this nature and future studies may usefully target fathers to address this research gap. Social services participants worked in social welfare settings and may not represent the views or experiences of individuals working in special education or other health settings. In addition, neither senior management nor government officials participated in the study; therefore, the perspectives of non-frontline higher management are not represented. Again, future research could target this group to investigate their views and experiences. The three participant groups were independent of each other. This means that the participating parents were not the parents of the participants with ID; neither were the social services participants working with either the participating parents or participants with ID. Therefore, the actual negotiation process among the three groups could not be observed directly.
Conclusion
People with ID desire meaningful relationships and have sexual needs as their counterparts without a disability. Promoting their autonomy regarding sexuality in Chinese context is challenging. Government and social services agency leadership should take the lead to adopt an evidence-based sex education protocol in daily practice. Lastly, any change should take account of the sociocultural context of the challenges faced by people with ID and their family regarding expression of their sexual needs.
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Lam, A.Y.K., Yau, M.K.S., Franklin, R.C. et al. Sexuality of People with Intellectual Disabilities: Dynamic with Parents and Social Services Personnel in a Chinese Context. Sex Disabil 42, 501–519 (2024). https://doi.org/10.1007/s11195-024-09839-w
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DOI: https://doi.org/10.1007/s11195-024-09839-w