Introduction

Malaysia recorded about 44,500 persons (0.14% of the Malaysian population of 32,000,000 citizens) with hearing impairment registered with the Welfare Department of Malaysia (Jabatan Kebajikan Masyarakat [JKM], 2018). This population is scattered across Malaysia as many are likely to move across states for studies, work, and marriage. However, deaf adults tend to congregate in cities and towns where they can find work and socialize with other deaf people (Deaf in Malaysia, 2021). Although deaf schools and deaf societies have become common place for socialization among the deaf communities, deaf people are the minority and mostly work and live with hearing members of the community.

Well-Being of Deaf People

Little has been documented about the well-being of the Malaysian deaf community. However, past researches reported that deaf people experience poorer psychological health compared to their hearing counterparts (Fellinger et al., 2012). Deaf people had higher rates of depression, anxiety, insomnia, emotional distress, and poorer quality of life than the general population (Fellinger et al., 2005; Kvam et al., 2006; Werngren-Elgström et al., 2003). In children, the prevalence of psychological difficulties (e.g. not feeling good about oneself, anxiety, etc.) was four times greater than in typical hearing children (Martikainen et al., 2002). Mental distress risk was higher in deaf individuals who were reported to have more communication problems, lower self-esteem, and less acceptance of their hearing loss (De Graaf & Bijl, 2002). These show that deaf individuals seemed to be more vulnerable than their hearing counterparts. Therefore, more attention should be given to explore this vulnerable group.

Most of the deaf and hard of hearing persons grew up in hearing environments, which has posed potential adversities and unique risks to their socio-emotional well-being (Eichengreen et al., 2021). Adversities like deaf stigmatization (Mousley & Chaudoir, 2018) and bullying victimization in school (Cheng et al., 2019) increased psychological distress among the deaf persons. Common themes revealed in the narratives of deaf people’s lives include isolation, tension and struggle (Leigh, 2009). In a study by Fellinger et al., (2009a, b), high depression rates were found in deaf children and it was significantly related to adverse communication experiences at school and home. These deaf children shared the same aetiological factors such as being teased, maltreated and neglected, as typical children. However, they face difficulties making themselves understood compared with typical hearing children. Deaf children who could not make themselves understood in the family were four times more likely to be affected by mental health issues than are those from families who communicate successfully. The poor connections and communication, social exclusion, and psychological distress may result in mental distress and suicidal ideation in deaf people (Akram et al., 2018; De Graaf & Bijl, 2002).

Sense of Belonging and Well-Being

The two main settings that deaf people grew up in were at home with the family and in school. At home, in hearing non-signing families, deaf members often experienced the ‘dinner table syndrome’, where they are excluded from the flow of family spoken conversations at mealtime (Hauser et al., 2010). Although hearing families tried to include deaf family members in family conversations and events, and the deaf member tried to follow along, they invariably still missed something, which led to confusion and made them feel left out or isolated. The deaf family member eventually felt disconnected from family or not feeling a sense of belonging at home (Meek, 2020). Meek further found that socializing with other people who are signers gave deaf members a stronger sense of belonging. Hence, it is not surprising that deaf students, for the first time, enjoyed satisfactory friendship and a sense of belonging with other fellow deaf students in a university that offers extensive deaf student support program (Hyde et al., 2009). On the other hand, deaf students in the same university who were in the majority hearing peer group had reported feeling socially isolated. Deaf students from another university with inclusive instructions for learning had reported similar feelings—they did not feel as much as a part of the ‘university family’ as did their hearing peers (Foster, 1999). The feeling of social isolation or belongingness were related to the nature of the group (e.g. communication mode, hearing status) they interacted with.

It is clearly seen that the communication barriers in the family (Calderon & Greenberg, 2012), and exclusion from peer interactions at school (Zaidman-Zait & Dotan, 2017) has negatively affect deaf people’s sense of belonging (Israelite et al., 2002). The sense of belonging plays an important role in a person’s well-being. In fact, Baumeister and Leary  (1995) state that sense of belonging is so vital to our survival that it is considered as one of our basic human needs along with food and shelter. The sense of belonging is the feeling of being accepted within one’s social group (Roffey, 2013). The sense of belonging also serves as a protective factor in a person’s well-being (Libbey, 2004). Connectedness to family was a protective factor against emotional distress, disordered eating, suicidal ideation and attempts (Blum et al., 2002). School connectedness was the strongest protective factor to decrease substance use, school absenteeism, early sexual initiation, violence, and risk of unintentional injury (Blum et al., 2002). Similarly, the positive social connections with others provides reliable alliance in the face of adversity, self-validation, support, and emotional security (Majors, 2012).

As for deaf adults, the main struggle that the deaf person experienced is similar to as when they were a child. Deaf people, child or adult, struggle with issues of equality, participation, and access. They have been excluded from participation in society because of these issues (Harris & Bamford, 2001). Deaf children depend largely on parents and teachers for information and guidance (e.g. access to information) and have developed friendships brought into adult lives. Research on deaf adults focused more on the struggle for equality, participation and access to information, which are related to linguistic and communication issues. These struggles has indirectly affected their well-being. For example, access to primary care affects the health of deaf people. Poor physical well-being was because of the poor accessibility to health care, and communication barriers in consultations with their doctors (Emond et al., 2015). In terms of a deaf person’s sense of belonging and well-being, deaf communities and deaf identity were reported to addressed these concerns. Deaf identity was significant for psychological well-being (Chapman & Dammeyer, 2017).

The Situation in Malaysia

The sense of belonging is indeed an important protective factor for those who experience multiple adversities in their lives (Werner & Smith, 2001). The deaf people are one of the vulnerable groups that has unique adversities related to communication challenges at home or in school. Similar to deaf people across the globe, one major challenge is to connect to the hearing society.  The communication barrier often leaves the deaf person socially excluded or isolated. Futuremore, there are additional language challenges in a multilingual country such as Malaysia. Malaysia is an ethnically and linguistically diverse population with Malay (69.8%), Chinese (22.4%), Indian (6.8%) and others (1.0%) (Department of Statistics Malaysia, 2021). Bahasa Malaysia is the official national language that is generally used by the whole population. The other languages used widely across the country includes English, Chinese, Tamil and other dialects (Pregel & Kamenopoulou, 2018). In Deaf schools, Manually Coded Malay (Kod Tangan Bahasa Malaysia—KTBM) and Bahasa Malaysia (written/spoken) is the main medium used for education (Pregel & Kamenopoulou, 2018). A Chinese family of a deaf person is likely to speak Chinese dialects at home while the deaf child learns written Bahasa Malaysia and some written English in school. The parents of deaf people who belong to the older generation do not quite understand English nor Malay, not to mention making it a conversational language at home. The use of multiple languages for communication adds to the communication challenge for the deaf person, which is important to make connections and to develop a sense of belonging with people.

Within families, Malaysian hearing parents’ communication with their deaf children varied. Not only do Malaysian parents have to choose which language to use for communicating with the child, they too have to make decisions on the deaf child’s communication modality—oral or/and signed language (Porter et al., 2018). Communications in spoken language were common in hearing families with a deaf child (Plotkin et al., 2014). However, Malaysian research participants who mainly used oral communication (e.g. lip-reading, residual hearing, and simple signs) for communication with family, wished their parents could sign for better connections (Pregel & Kamenopoulou, 2018). A good match of communication between hearing parent and deaf child was said to positively impacted the deaf child’s emotional well-being (Leigh et al., 1990).

Social connections in schools with teachers and classmates are just as important as social connections at home with family. In the Malaysian educational setting, deaf students have three options for education: (1) special schools, (2) special education integrated program, or (3) inclusive education program (Khairuddin et al., 2018). Meaningful communication (spoken, written and/or signed) is essential for equal participation in the classroom for deaf students (Lee et al., 2021). However, there is insufficient understanding of the importance to have this type of environment in the Malaysian schools (Khairuddin et al., 2018). There is still a lack of interpreting services for classes with deaf students, and a lack of teachers who are skilled in sign language (Muhamad Nadhir & Alfa Nur, 2016). Communications among classmates in Malaysian schools differed according to the chosen educational program. It was reported that Malaysian deaf students in the inclusive program experienced isolation, while those under the special education integrated program enjoyed communications in sign language with other deaf students (Khairuddin et al., 2018). This shows that communication with hearing peers is lacking and it is possibly due to language barriers. Fellinger et al. (2009a, 2009b) supported this possible reason as they found that the level of language (signed or spoken) used with others at school was associated with peer relationship difficulties.

The communication challenges in Malaysia has posed potential adversities to the deaf people when there is a lack of connectedness or sense of belonging, resulting in poorer well-being. Little has been documented on the sense of belonging for the deaf community in Malaysia. Therefore, this research explores the deaf person’s sense of belonging and well-being through their social experiences in Malaysia, as they are part of a minority and vulnerable people group in the country.

Research Method

Research Design

This study used the ethnography approach with participant observations followed by in-depth interviews, to explore the social experiences of Malaysian Chinese deaf adults residing in Ipoh, Malaysia. Ipoh was chosen as it is the city where more deaf people in the state of Perak congregate. It is also where the first author was a participant and occasional sign language interpreter in that community. Deaf communities are sporadic across the country. Sign language and deaf culture are developed within that particular community, forming a unique minority culture. Being the minority and deaf, this community is easily marginalized or ignored. Hence, ethnography research method was deemed as the most appropriate research method to study this marginalized population (Marshall & Rosman, 2016). The researcher was fully integrated and engaged with the deaf community, and was considered as a friend by the community. Starting from 2012, she was involved in this deaf community as an interpreter, teacher, a hearing participant in their deaf events, and a friend who attends personal life events (e.g. weddings, funerals, holiday outings, festival celebrations, etc.). With eight years of immersion in the deaf community (2011–2019), the researcher had established a comfortable, trusting relationship with members of this deaf community.

Sampling

Participants of this study were recruited through purposive and snowballing sampling methods. Participants were selected among the deaf community in Ipoh whom the researcher has already established trust with. They were then selected based on these criterion—(1) the only deaf person in the hearing family, (2) aged between 18 and 39 years old, and (3) a Malaysian citizen of Chinese ethnic living in Ipoh. This target group are adults who had a certain amount of exposure and self-discovery, who could articulate their thoughts and experience independently. In this stage of life, they would be starting off their careers and also seeking relationships—which would provide a rich data in understanding deaf participants’ social life. One of their hearing parents was interviewed to provide background information and perspective of the child’s social interactions and well-being in the earlier years. This source of data was used for triangulation purposes as well.

Recruitment

After obtaining ethical approval from the university, invitations were sent out to the Ipoh deaf community through WhatsApp messages, and sign language video message on Facebook. Interested participants were followed up and an interview date was scheduled for both participants and parent. Participants who declined to be interviewed suggested other members in the Ipoh community. Three pairs of participants were recruited in this manner. The other three pairs of participants were reached through their hearing parent by recommendation of a hearing interpreter who served the deaf community for 15 years.

Research Participants

Demographics of Participants

A total of six pairs of deaf adults and their hearing parent took part in this study. Participants consisted of three pairs of hearing mother-deaf daughter, two pairs hearing father–deaf son, and one pair of hearing father–deaf daughter. Parents interviewed were the main care-givers of the deaf child. All hearing parents interviewed assumed the main responsibility between the spouses, to look into their deaf child’s needs in the early development years. This was the case except for participant 4 whose main care-giver (mother) was ill and unable to attend to the interview.

Most of the participants were from the middle social economical background. Only deaf participants 3 and 4 came from low social economic background, and whose parents had lower education (up to primary education) compared to the rest. All deaf participants exceed their parents’ education level, except for the deaf sons of hearing fathers. All deaf participants graduated with a polytechnic diploma in Graphic Designing except for deaf participant 5. It is common for deaf students to be sent to pursue a polytechnic diploma after their secondary school studies. Of which, three of them (deaf participants 1, 3, and 4) stayed in hostels away from home during their polytechnic diploma studies. All deaf participants had at least one ear with severe to profound deafness, and only one had a cochlear implant (deaf participant 2). Those who wore hearing aids (deaf participant 2 and 4) were the ones who were sent to hearing primary school for a short period of time. The Table 1 below describes the research participants that were interviewed.

Table 1 Demographics of Deaf Participants and Hearing Parents
Full size table

Communication Mode of Participants

Four of the hearing parents (participant 1, 2, 5 and 6), who were in the middle class social economic status, intentionally learnt sign language to communicate with their deaf child in the early years of development. They used a mix of basic sign language, home sign and spoken Malay for communication with their hearing child. Spoken Malay was used instead of their spoken mother tongue (Cantonese) because it was advised by experts to use only one spoken and written language and Malay was the language used in schools for learning. This mode of communication was adapted since young till date. Writing in simple Malay was included as their child learnt written language in school.

The other two hearing parents (participant 3 and 4) were from the lower social economical class, did not learn sign language to communicate with their deaf child. Parent participant 3 regarded his deaf daughter as a regular hearing person with some hearing loss, and spoke to her as she wore hearing aids and learnt to speak. Home sign was minimal. Their communication mode was mostly using spoken Cantonese mixed with a little spoken Malay when needed. Parent participant 4 also used spoken Cantonese to communicate with some home sign. No writing or sign language was used.

Data Collection Techniques and Procedures

Two data collection techniques were used in this research: (1) participant observation and (2) interviews.

Participant Observation

To facilitate the data collection process, the researcher was a participant-as-observer. She could fully integrate into the deaf community understudied, and was treated as a friend and neutral researcher. She adopted an active membership role and had engage in core activities (e.g. interpretation or simple explanation of English words when needed during the meetings). She had refrained from committing herself to the deaf community’s values, goals and attitude. This is because there were two different attitudes towards being deaf in the deaf group who attend the meeting—the pride of being Deaf and being a person with disabilities. The researcher did not want to be seen to take sides or supporting either position.

The researcher was fully involved in this community for 8 years (2011–2018), and data were collected through participant observation in year 2019 for a duration of two months (1 July–31 August 2019). Participants and all the other deaf non-participants present were aware of the researcher’s role, the purpose and process of the research, and gave consent to the participant observation during meetings.

The participant observations were mainly done in two contexts—(1) two separate times during the weekly meetings, and (2) during the interviews. The weekly meetings lasted about three hours each time, and it was a time for socializing and learning religious matters. The researcher’s observations focused on deaf participants’ general social interactions throughout the meeting—the choice of interaction (e.g. whom they chose to interact with), mode of communication (e.g. sign language, hand-coded Malay language) and content of communication (e.g. topic of discussion). This information was recorded in an observation checklist with a section for additional field notes. The field notes captured other details of participants’ interactions such as the enthusiasm in interactions, duration of conversations with individuals or as a group. These observational data were used as supporting evidence to provide context for the themes that emerged from the analysis.

The researcher participated in activities and conversations only when invited, and did not actively take initiatives to be involved. This was intended as to not interfere with the deaf participant’s natural choice of social interactions. After the event, the researcher noted down her observations. Researcher’s involvement as a participant might have inhibit deaf participants from talking about true emotions about certain topics such the hearing interpreter’s performance.

The researcher did not observe two deaf participants as they did not attend the weekly meetings. However, all participant pairs of parent and adult child were observed of their interactions before, during and after the interview, as they came together for the interview. Observations focused on the dynamics and interactions between hearing parent and deaf adult child and were recorded as field notes. Researcher also took note of their communication mode, communication limitations, and the nature of their relationship. Observations from both the weekly meetings and interactions between hearing parents and deaf adult child provided insights into deaf participants’ nature of communication and socializing.

Interviews

The researcher also conducted informal semi-structured and retrospective interviews with the deaf participants and hearing parents to further explore the deaf person’s social experience. The interviews were conducted over a 40-day period from 13 July to 23 August 2019. Before the data collection, the researcher obtained informed consent from the participants. They were briefed about the nature, purpose, procedure, privacy, and confidentiality of the research. Participants were given the opportunity to ask for clarifications about the research anytime.

The deaf participants were asked open-ended questions such as “What was growing up as the only deaf member in a hearing family?” and “What are some of the challenges you faced growing up in a hearing environment (family and community)?”. Hearing parents were asked “Please share with me your experience bringing up a deaf child” and “What were the challenges you have with your deaf child”. More questions were added to further explore the narrative of the interviewee. One interview was conducted for each deaf participant and each hearing parent. A second interview was conducted with Deaf participant 1, 2 and 3 to seek some clarification on the response of their first interview and obtain more information about their experience.

The interviews were conducted in spoken English or Chinese for the hearing parents, and Malaysian sign language for the deaf participants. Spoken interviews were audio recorded while sign language was video recorded. The length of interviews ranged from 30 min to an hour. The interviews were conducted individually, although some of the interviews were conducted in the presence of the other (e.g. deaf adult child or hearing parent). The participants were presented a token of appreciation after completion of the interview.

Ethical Concerns

It is the best interest of the researcher to ensure that the community under study is not harmed in any way throughout the process. The researcher is mindful to keep the privacy and confidentiality of participants, and always consider how the participants may be affected by the research process itself. Before collecting the data, the researcher made clear  the potential risks and benefits for the participant during the briefing of inform consent before data collection. One of the privacy and confidential risks is that participants’ interview would be reviewed by another community sign language interpreter for transcribing and interpreting accuracy purposes. As the deaf community is small, the sign language interpreter and participant were most likely to know each other. Therefore, the privacy of the interviews was extended to the sign language interpreters, and the identity of the interpreters were made known to the participants before they agreed to participate in the research.

As participant observation was covertly collecting data, the researcher has made known the purpose and procedures in the informed consent briefing. A possible limitation in meeting the ethical guideline is that the observed participants do not know when exactly they are being observed.

Data Analysis

Transcription

Three verbal interviews were conducted in Chinese, and then they were directly translated and transcribed into English by the researcher. To check for accuracy of interpretation, the audio and transcripts were given to another interpreter to review. The English interviews were directly transcribed into verbatims. As for the sign language video interviews, the researcher voice interpreted them into English before transcribing it down in text. Thereafter, two other sign language community interpreters who are familiar with this deaf community’s expression in sign language helped to cross check the accuracy of the translations. To ensure accuracy, if there were any doubts in the transcription, researcher approached the participant to seek for clarification.

Participant Observation and Field Notes

The field notes from the participant observation was recorded in two formats. One was in an observational checklist, and the other was the researcher’s written observations about deaf participants’ social interaction. The researcher analysed data in the checklist and the written observations for each deaf participant at a time. Codes were given for each emerging pattern in the observations. The codes were later combined with the thematic analysis of the interviews. Data from this source, provided information to help with triangulation of the deaf participants’ social interaction situations.

Thematic Analysis

After the transcription of the verbatims, the researcher examined the experiences shared by the participants using thematic analysis (Braun & Clarke, 2006). The researcher familiarized herself with the data through reading and re-reading the data, noting down initial ideas. Then, codes were generated in a systematic way across the data set.

Verbatims of the interviews were coded by the researcher and another two independent coders, for inter-rater reliability. These two second coders are interpreters who have been involved in the deaf community for 9–15 years. When there was a disagreement over meaning, the researcher and second coder discussed, and came to an agreement of which codes best represented the data. These codes were grouped together according to their similarities, which formed an overarching theme. The emerging themes and patterns were then reviewed by checking if the themes work in relation to the codes and entire data set. Lastly, the specifics of each theme were refined by generating clear definitions and names for each theme, before producing the report. The same approach was used for the fieldwork notes, and observations. The themes between the different sources of data overlapped, hence it was decided to combine all data from different sources to analyse as a whole. Later, all codes were combined for triangulation purposes. The results reported the theme and indicated the source of data to reveal clearly which was the deaf participant’s lived experience and parents’ perspective of the matter. The analysis was reported in writing using reflexivity.

Reflexivity

The researcher conducted the interviews and analysed the data. Her motivation for the research is acknowledged here in order to promote transparency. She was motivated to understand and document the well-being of the deaf people as they have been socially marginalized because of language barriers and their hearing disabilities. Reflexivity helped to increase her awareness of possible biasness due to her assumptions and perspectives as a participant of the community for the past 8 years. In her course of interaction with this deaf community, the researcher felt empathy for deaf participants when they were misunderstood and excluded by hearing members of the community and family. This assumption influenced her as she interviewed the deaf participants. She had a tendency to focus on client’s emotional and social response to the way hearing members related to them. However, as she interviewed the hearing parents, she saw a different perspective of the deaf person’s situation—hearing parents had put in a lot of effort to communicate, but it has not always been effective or acknowledged as sufficient to meet the child’s communication needs. These reflective thoughts after the interviews helped the researcher to view the situation of the deaf participant from a deeper, and more complex angle. These reflections were included in the writing of results, to provide a context of the data analysed.

Reliability and Validity

According to Angrosino (2007), qualitative ethnographic researchers are not usually concerned with reliability as the findings of their research cannot be replicated. In other words, one researcher observing the community at one time cannot exactly duplicate the findings of a different researcher observing the same community at a different time. However, for observational research, conduct observations in a systematic fashion is a way to achieve the criteria of scientific reliability, such as using a standardized technique for recording and analysing the data. To achieve reliability for data collection in this research, field notes were jotted down after the activity with the deaf and it included observation of behaviour, nature of setting, content of topic/activity and also personal insights and reflections of the activity and interactions. Perhaps, these standardizations of checklist to be observed will increase reliability of data. As for data analysis of interview data, to determine inter-rater reliability, another independent rater coded the interviews. The independent coder would probably code it slightly different from the researcher. According to Murchison (2010), the fact that it can be coded differently is a sign of richness and complexity of the ethnographic record. Multiple coders add a check on reliability.

As for validity in analysing the data, researcher used the technique of verisimilitude (Angrosino, 2007), which is a style of writing that draws the reader into the world that has been studied so as to evoke a mood of recognition. The researcher use rich descriptive language that is internally coherent, plausible, and recognizable by readers from their own experiences or from other things they have read or heard about. These may also include reporting and making known possible personal biasness as a researcher in the process. The work that achieves this is seen to be authentic in the eyes of the readers. Hence, these observations become ‘valid’ when they are rendered into some sort of coherent, consistent narrative.

Also, in order to control the biasness, it is a common practice to make the specific biases explicit and add quality controls such as triangulation, contextualization and a non-judgmental orientation (Fetterman, 2019). Angrosino (2007) states that “good ethnography is usually the result of triangulation, which is the use of multiple data collection techniques to reinforce conclusions” (pp. 35). Triangulation will be used to reduce biasness by using data from different sources (e.g. information from interviews, archival searches) to cross-check the observations findings. Reflexivity as a means for the researcher to reflect on own thoughts and be aware of how the researcher’s background affects their point of view, along with transparent reporting will help clarify the biasness.

Results

Deaf participants shared about both past and current social experiences in school and with hearing family members. Three participants (Deaf participant 3, 4 and 5) who had started working during the time of data collection, shared very minimally (or not at all) about their social experience at the workplace, love life, and general community. A larger portion of their narratives focused mainly on family and school. This indicated how family and school possibly were of greater importance and therefore might have a greater impact on the deaf participants’ social life. The purpose of this study was to explore the sense of belonging and well-being through their social experiences. Therefore, the results will report both past and current social experiences with family and in school, even though the experience narrated were childhood incidents. Thematic analysis reviewed similar themes across the data from participant observations and the interviews with the Deaf participant and hearing parents. The main theme that emerged was the deaf participants’ social experience of ‘struggling to fit in’, which resulted in various ‘emotional struggles’ affecting their well-being and search for sense of belonging.

The Struggle to Fit In

Across the different source of data, deaf participants either shared clearly described situations or showed indication of struggles fitting into the hearing environment. Deaf participants struggled to fit in whether it was at home with family, or in school with classmates.

Deaf participant 4 struggled to fit into her hearing family because of communication issues. She could speak and read lips, but her hearing abilities were insufficient to follow the family’s communications. She relayed her experience trying to join in the family’s communication:

It would be better if my relatives included me in conversations. I always had to ask my sister what they said. But she would reply me saying, “Aiya, aiya. Nothing. Nothing. Never mind” (This is a Malaysian expression of “oh, forget it. It’s not necessary to know”). I felt hurt and left out. I want to be part of it. But they kept telling me that I don’t need to know. But, I am family! Why do they exclude me as a deaf person? (Deaf participant 4)

Although this family conversation did not happen around a meal, the scenario is similar to the “dinner table syndrome” phenomena where deaf individuals are excluded from the flow of conversations (Meek, 2020). She expressed this with frustration and hurt. With the unchanged situation, she ended up not wanting to join in family Chinese new year visitations.

“I rather stay home while all of them go, because they all speak in their own world. I really dislike it. I hate it when they talk. It is boring to sit there and just watch. I don’t feel belonged” (Deaf participant 4).

In researcher’s observation, she interacted with all the hearing people in the deaf meeting. She even married a hearing man. She had no issue with confidence to initiate conversations with hearing members. Her struggle to join in conversations with family was because there was little accommodation by hearing family members for her hearing loss. She was expected to fit herself in the hearing environment just like regular hearing people with little or no assistance. She longed for a sense of belonging within the family but struggled to fit into the hearing family conversations.

Recollecting early experience, deaf participants expressed the struggle to in, in the school context. Deaf participants couldn’t cope with learning in a hearing environment because of their hearing loss that affected communication. Deaf participant 1 and 2 shared their struggle:

My mom sent me to a vocational school in XX (another state) when I was in Form 2. That school had a mix of hearing and deaf people. I was quiet. They kept asking me questions. I felt pressured being with hearing people. You were put aside if you were deaf. I was tired being in this situation (she looked sad, but not angry). So, after my mother had a discussion with the teacher, we decided to move back to Ipoh for the rest of my secondary studies. (Deaf participant 1)

When I was in a hearing school when I was 7 years old. I could not hear or understand what teacher was saying. So, I moved to a deaf school. (Deaf participant 2)

I had a hearing friend who helped me in primary 1 and 2. When the study level got higher, I couldn’t keep up. It was very difficult, I couldn’t hear or understand what teacher was saying, and I no longer had a friend to help me with interpretations on what is going on in the class. I was scared, I couldn’t focus in school. I wanted to go to the deaf school. (Deaf participant 4).

The struggle to fit into the hearing environment was also because of the multilingual situation in Malaysia. Deaf Participant 6 made friends with his hearing friends but struggled to communicate with them because of the different language used. He described his experience:

I can make a lot of friends with the hearing. But the hearing and deaf are always segregated. They can hear and we can’t. They always speak Chinese and don’t use English very much.” (Deaf participant 6).

Although deaf participant 6 is Chinese, his main language was Malay, followed by English. According to the interview with his father, parents were advised to speak only one language to help the child’s communication development. The hearing young adult Chinese Malaysians in Ipoh do know Malay, but they are more comfortable to speak in their mother tongue—Chinese. This seem to indicate that his hearing peers were not sensitive to his communication differences as a deaf person, and he was left out from communications because of the language barrier. Deaf participant 6 did not insist to be involved in communications in his presence. But when he tried, he struggled to stay in sync with his hearing peers.

The researcher observed that both hearing parent and deaf adult child (Deaf participant pair 3) did not share a common language for communication. The hearing parent was illiterate and could only speak Chinese while the deaf child could only read and write Bahasa Malaysia. They used simple home sign for the necessary daily communications. During a visit to the family, it was observed that the deaf adult child and hearing parent struggled to communicate. In the end, there was no communication unless necessary, as both sides were helpless in communication. The deaf adult child couldn’t fit into the hearing environment without assistance. She was emotionally and socially isolated. Her mother expressed worry for her daughter’s emotional and social well-being thus quickly searched for a deaf community for her daughter.

The results showed how the deaf participants couldn’t fit into the hearing environment without some accommodation in communications by hearing members. They struggled because of the inability to hear the conversations and the use of different language, which left them excluded from conversations. Their hearing parents were aware of these struggles too. Parent participant 2 took her deaf daughter out of the mainstream school and placed her in a deaf school when she realised that her daughter was struggling to fit in. Parent participant 3 verbally mentioned her worry about her deaf daughter’s loneliness and social well-being because of her struggle to fit in socially in the hearing world.

Emotional Effect

There were some emotional effects resulting from the struggle to fit into the hearing environment. Deaf participants reported to have experienced fear, frustration, shame, and aloneness, which would lead to poor mental health if there was insufficient coping strategies.

Fear

Deaf participants were fearful of not knowing what was going on in the hearing world. They were anxious when they were required to respond but had no information (through sound) to know how to respond appropriately. This led to fear of embarrassment—looking stupid for not knowing what is going on. Deaf participant 4 studied in a hearing classroom for about 2 years. This is the account of her experience:

I was scared that I would get punished if I did not answer my teacher’s questions correctly in front of the class. I couldn’t hear or understand what my teacher asked. I was really scared and wanted to go back to the deaf school. (Deaf participant 4)

Deaf participant 2 was afraid that she would be laughed at if she used her voice to talk. Mother of deaf participant 2 shared in the interview that her daughter didn’t want to speak even though she had a cochlear implant. When deaf participant 2 was asked personally about the reason why she didn’t want to speak, she said “ my voice is not nice. it’s very difficult. I can’t and don’t want to speak”. The researcher suspected that she was afraid to be laughed it for speaking. A key informant of the deaf community explained to the researcher that it was true that some deaf people who could speak, preferred not to, because hearing people would laughed, teased and bully them. The researcher has also witnessed other deaf people being teased for their poor speech. Research has also indicated how bullying and teasing was one of the common negative experience deaf people had (Cheng et al., 2019).

Deaf participant 2 who had a cochlear implant and deaf participant 4 who was hard of hearing, were more sensitive in hearing environments. Perhaps, there was more expectation and awareness about the hearing world as they had “better” access to hearing, which caused them to feel more fearful than the other deaf participants who were not bothered about hearing people’s respond to them.

Frustration

Other than fear, deaf participants experienced frustration in interacting with hearing peers. When asked about socializing with hearing peers, she exclaimed:

I don’t know. There’s nothing I can do. (We can only) go our separate ways. (Deaf participant 2)

Father of deaf participant 6 also shared how his deaf son was frustrated with family communications. The hearing father shared:

My son finger spells so fast, I can’t read it. I don’t understand. He starts to get vocal. He can’t speak but makes certain noise. I sometimes, get angry at him too. (Hearing parent 6)

Both deaf son and hearing father got frustrated in communication, which resulted in less communication, and sometimes, a sense of helplessness. Although this hearing father learnt sign language to communicate with his deaf son, it was not sufficient for deeper communication that the deaf son desired.

Isolation

Deaf participant 3 was isolated from the hearing community and her deaf peers for a decade, and recently only reconnected to the deaf community. In the interview, she expressed how isolated and lonely she felt. When asked about her social connectedness, she shared:

When I have problems, I will look for deaf friends, but I don’t have any. I am quite alone. I don’t have hearing friends. I don’t have a boyfriend and not married. I wish to marry. What about you? (Deaf participant 3)

Deaf participant 3 expressed a desire for friendship and social connections. In the interview, she frequently wanted to have a sharing session, to know and hear about the researcher’s life. In researcher’s observation when deaf participant 3 was in the company of other people, she would initiate small talk with other deaf or hearing people in the meetings. However, she had poor social skills and did not know how to relate to others appropriately. The deaf people initially avoided her because of her ‘weirdness’ in communication. For example, she would repeat the same sentence multiple times in different ways (e.g. fingerspell, manually coded Malay, sign language, write the letters with her finger). She seemed to be concerned about being understood. Hence, used multiple ways to attempt communicating the same message. Her mother was concerned about the possible loneliness and depression of her deaf daughter and that is how she got connected to this deaf community.

Deaf participant 4 expressed the emotional impact of loneliness on her as a child. She felt alone, was left out and isolated from meaningful connections. She shared:

When I was young, I would cry because I couldn’t hear what people was saying. People gossiped and laughed at me because I couldn’t hear. I was very sensitive and easily got hurt. I wanted to understand what everyone else was talking about but I couldn’t communicate. I felt left out. It was very difficult for me and I hurt inside. My parents didn’t understand why I cried. I kept it to myself. (Deaf participant 4).

Deaf participant 3 expressed present feelings of isolation, while deaf participant 4 expressed past emotions of feeling isolated. Their parents seemed limited to resources and knowledge to assist their deaf child in meeting their social needs. Both Deaf participants were born to parents who were less educated and did not have the resources or knowledge to raise the deaf child personally. Most of the deaf child’s learning was left to the teachers of the school. Deaf participant 3 was dependent on parents for her social life while deaf participant 4 was left on her own, to find her own way in the social hearing world.

Deaf participant 1, 2, 5 and 6 who had emotionally supportive parents, did not express feeling isolated. This did not mean deaf participants never experienced or felt loneliness or isolation, but it did indicate that such incidences might have not been too devasting, or it was not a continuous struggle in their life. It was observed in the interviews that their parents had put in much effort to ensure that their child had the social and emotional support needed in life. In fact, these parents knew each other and shared many activities together for the deaf child’s development (explicitly stated by parent participant 1, 2, 5, and 6). These hearing parents described extensively in the interviews about their efforts and challenges to support their deaf child’s social and emotional well-being. Parents educated themselves about the child’s condition and developmental needs. They took initiatives to provide a wide exposure for the child’s learning. They ensured that they deaf child had other deaf children to mingle with. These four deaf children, now adults, are emotionally secure and had strong emotional bonds with their parents. Interactions between deaf adult child and hearing parents indicated a good trusting comfortable bond. None of the four deaf participants expressed any feelings of isolation. This supports the importance of parents’ support as a protective factor in a child’s development (Sheridan, 2011).

Shame

One of the other emotional effect deaf participants expressed was shame while struggling to fit in. Deaf participant 4 was taunted by hearing people in public for not being able to speak. She angrily relayed a story of how a food stall owner embarrassed her in public for not being able to speak. When the stall owner found out she could not hear, instead of being helpful, she said loudly in front of everyone: “You cannot hear and cannot speak? How are you going to order? If you have a voice, speak lah!”. The public’s eyes were on her, she was very hurt and embarrassed by this incident. She developed a fear going to Chinese hawker stalls or other food stalls that required her to speak to order food. To avoid such public shaming, she would only go to food stalls with food menus. This behavior and the reason for it was consistent with the other deaf participants and the wider deaf community.

Although deaf participants did not explicitly share how they were shamed, the researcher suspected that it is likely that they have experienced it and thus avoid being in the hearing environment or selective choose their connections. In the researcher’s participation observation, deaf participants avoid asking questions when they do not know, to avoid the shame of not knowing. The older deaf people had to encourage them (deaf participants 1, 2, and 3) that there is no shame in asking what one does not know.

It seems that the unspoken shame was something to be avoided. Deaf people might have avoided such situations by choosing the communities they are comfortable with. Feeling shameful for being who they are, for what they are not able to do (to hear to understand and to be involved) could have made them wanting to pull themselves out of the community they do not feel belong. Deaf participant 1, 2, and 4 preferred the deaf community over the hearing community. Deaf participant 5 and 6 preferred to be alone and not get involved in either community. Deaf participant 3 was unfortunately not given much opportunity to interact with either hearing or deaf community.

Sense of Belonging & Well-being

The negative emotional experiences resulted from trying to fit in may impact one’s well-being negatively, if no effective coping strategies were adapted. The results of the study revealed that deaf participants coped with the challenges of fitting into the hearing environment by looking for quality social connections, which gave them a sense of belonging. Results of this study revealed three characteristics of sense of belonging that deaf participants look for—equal relationships, inclusiveness, and connectedness. These social connections built a sense of belonging which helped maintain their well-being.

Equal Relationship

The search for equal relationships was expressed by deaf participants in their educational experiences (Lee et al., 2021), and also echoed in their general social experience. Deaf participant 2 was happy when she shared about her experience studying with hearing classmates. This was especially when there was an equal relationship between the two persons. An equal relationship refers to having mutual exchange of help. It is about equal ability to contribute, and not always having to depend on others. Both deaf participant 1 and 2 expressed this sentiment:

I have a friend in class who would help me with communications. If there’s any miscommunications, she would write it down. I will teach her to sign and fingerspell. We help each other this way. (Deaf participant 2)

I mix more with hearing people because they can teach me and I can teach them sign language (Deaf participant 1).

It was also similar when deaf participant 2 started work. She happily taught her hearing colleagues sign language and was happy to contribute in that way. It was an equality of the friendship. She seemed to be happy with the learning together approach.

When I first entered the work force, I looked for a hearing person and she became my friend and we worked together. She wanted to learn sign language, so I taught her the alphabets. She continued to learn and I taught her at work. She enjoyed it, like it. So, working was good. There was an exchange of information and learning together for proper communication. (Deaf participant 2)

It seems that deaf participant 2 appreciated the mutual exchange of help and learning together. The researcher also observed this practice in deaf participant 3, 4 and 6. In their communications with the researcher in the interviews, they happily taught the researcher new signs when needed. They seemed happy when the researcher learnt a sign from them. It was similar in the researcher’s experience during the weekly meetings and interpreting events. Perhaps, this kind of mutual exchange gave them a sense of equality and significance. There was something that the deaf contributed and offered to the hearing world, and not having to always be in the receiving end. Being deaf may require special assistance in communication when present in hearing communities, which sometimes may made the deaf person feel being dependent. Thus, when there was a mutual exchange, it put the relationship on an equal level.

Inclusiveness

Deaf participants also revealed that they valued inclusiveness in their social connections. Again, it did not matter whether it was the hearing or the deaf community, it was as long as they were included socially. Deaf participant 2 clearly demonstrated this. In the interview, she explicitly said that she preferred to hang out with the deaf. One main reason for this is because she wanted to be included in conversations with her hearing colleagues at work but she couldn’t. When asked how she feels as a deaf person in such situation, she said, “I can’t hear or understand what they were saying. I am not able to join them”. This may have made her feel left out and not part of the group. Yet, later in the interview, she indicated an appreciation and feeling of belongingness when her hearing colleagues who included her in lunch outings and considered her needs. She shared her experience:

I feel belonged with the hearing because we go out for lunch together… The hearing people are concerned about me. They would ask me out for a meal and sometimes, they would help me order food. We sit down together for a meal. When I need help to speak, they help me. (Deaf participant 2)

She was included and her needs considered. Thus, this made her feel belonged to this hearing group. If the hearing community did not consider including the deaf person in their conversations and company, the deaf person would not be able to connect and hence prefer to connect with other groups (e.g. deaf community) that would include them. Deaf participant 6 expressed this idea of inclusiveness and how it affected his preference of connection. He states:

I prefer to be with the deaf. But with the hearing, you can have a lot of friends. The hearing and the deaf are quite segregated because they (hearing people) always can hear. They (hearing people) always speak Chinese; they don’t use English very much. So, I feel that it is better to be with the deaf. (Deaf participant 6)

Deaf participant 6 seemed to be bit torn between choosing deaf and hearing friends. There was an impression that he wanted to connect with more hearing friends but because he was not able to join in conversations with hearing people, he chose to be with the deaf. There were communication barriers. First, it was about not being able to hear the conversation, therefore not being able to join in. Second, it was also about the type of language used. Deaf participant 6 was more familiar with Bahasa Malaysia and English, in writing and perhaps able to lip read some spoken words. But the main language used for communication was Chinese, in which Deaf participant 6 was totally left out and not included in this hearing group. Hence, the preference to be with the deaf community whom he shared a common language for communication. All in all, this seems to indicate that when people include and cater for the communication needs of deaf person, they would not mind being part of that group.

Connectedness

Some of the deaf participants indicated in their interviews that they enjoyed making connections with others and establishing friendship. It did not matter whether they were from the hearing or the deaf community. However, it depended on how connected they felt. It is interesting to note that they emphasized on the need to ‘feel’ connected. This search for connectedness was seen in the classroom (Lee et al., 2021), and also extended to their general social experiences with people around them. Deaf participant 1 was undecided about which group she preferred to connect to, because she enjoyed being with both hearing and deaf people, for different reasons. She stated:

I am curious (to know) when I see deaf people sign, but I feel more belonged with the hearing, because I enjoy being with them… but it is better to be with all the deaf, it’s just different… I like both (hearing and deaf friends).. I don’t know which to choose. I think both are okay. I don’t have a preference. (Deaf participant 1)

In earlier parts of the conversation, she said she enjoy being with the hearing because she could get to know their stories and learn from their experiences. While she enjoyed being with the deaf because communication was so free and easy to express and understand. She was torn between both worlds, so she embraced both communities, as each community gave her different experiences. Regardless, she felt a sense of connection.

Deaf participant 4 also enjoyed connections with people, but she preferred the deaf community over the hearing community. Her reason for a preference of the deaf community was not only because of better communication, but also because the deaf community was smaller and a close-knitted community. It was unlike the hearing community where there were so many individuals. She shared:

I like to be with the deaf, as it is easy to connect and sign to them. For the hearing, it was difficult because they don’t (sign). Not all of them know (how to sign). Not everyone is my friend. We have 60 students in a class, but I don’t feel belong to everyone. For the deaf group, I feel belong because the class is smaller. It makes me feel closer. That’s why I like to be with the deaf. (Deaf participant 4)

From these statements, despite the different preferences, it can be seen that deaf participants appreciate connecting with people especially when communication was not a barrier. They felt connected and belonged.

Summary of Results

This study provided insights to deaf participants’ sense of belonging and well-being through the lived social experiences with hearing members of family and society. Results showed how a poor sense of belonging impacted deaf participants’ emotional state. Feeling fearful, frustrated, being isolated, and shameful about themselves were the negative affection revealed in this study. If these negative feelings resulting from their adversities are not managed carefully, it may lead to psychological distress. Communication was obviously a barrier in the context of Malaysia as multiple languages were used especially for the Chinese community where Mandarin or dialects (e.g. Cantonese) were used at home. In managing their social life and well-being, deaf participants find their sense of belonging in people or communities that would offer equal relationships, inclusivity and connectedness.

Discussion

The sense of belonging is an important contributor to a person’s well-being (Baumeister & Leary, 1995). Results revealed the deaf participants’ struggle to fit into their hearing environments. This is consistent with previous research, reporting that mental health risks were resulted from social exclusion (Akram et al., 2018; De Graaf & Bijl, 2002), and poor communications (Johannes Fellinger et al., 2009a, 2009b). Although the struggle to fit in by deaf people is an obvious fact, this research highlights the unique communication situation in Malaysia. There was not just a communication modality challenge (e.g. spoken vs. signed) for the deaf child and hearing family. The deaf child had to use different spoken/written language at home (e.g. Chinese), and at school (e.g. Malay). Hearing parents or deaf child had to be minimally bilingual in order to establish better communication connections. Hearing parents (Parent 1, 2, 5, and 6) were versatile with language and were minimally bilingual. They knew Chinese (their mother tongue), Malay (the national language), English and some sign language. They fared better in giving the emotional support needed to the child, as compared to those who lacked this skill or ability (Parent 3 and 4).

Communication between the deaf with hearing family members is crucial to the social and emotional well-being of the deaf person (Calderon & Greenberg, 2012; Israelite et al., 2002; Zaidman-Zait & Dotan, 2017). As deaf adults reported that the chronic lack of accessibility to communication with hearing parents was a common childhood trauma (Anderson et al., 2016), the ‘dinner table syndrome’ that the Malaysian deaf participants also experienced should be addressed. Such childhood traumas may be carried forward into the adult life. The ‘dinner table syndrome’ may also have been expressed in a different context as a hearing adult (e.g. during big extended family gatherings, office and school events, etc.). One way to move forward is to begin initiatives in the early stages of the deaf child’s life—provide accessibility and resources of sign language to hearing parents of deaf children. Paediatricians, early intervention therapists, and teachers need to emphasize the importance of accommodating the child’s communication needs so that they are included in family communications. The effort of hearing parents to learn and use sign language for communication will greatly benefit the deaf person. The initiatives of using sign language should not be limited to the family of the deaf person, but also be extended to the schools and community. This provides the opportunity for deaf people (children and adults) to participate meaningfully in communications among society.

Another highlight of this study is that deaf participants seek for connections that are equal, inclusive, and connective. They did not show partiality to a particular hearing status group (e.g. deaf or hearing), but rather, they selectively chose communities with individuals who include them as valuable members of the community, accept their contribution, and treat them as an equal. It is also important to note the contrary—deaf did not feel belonged and avoided such situations when they are excluded, or not treated equal as a person in social groups. Malaysian hearing individuals may not have sufficient knowledge about deaf people and are ignorant of their linguistic difficulties. Deaf people are grouped under the broad concept of “disabilities” and likely viewed as individuals who are disabled. Hence, the relationships are not equal and deaf person do not feel belonged in certain social connections. To increase inclusion of the deaf into society, these three qualities of social relationship (equal, inclusive, and a sense of connection) should be considered in designing disability-inclusivity activities and programs for  deaf people.

The hearing community may also tap into the resources the deaf community can offer. The experience of a deaf person is something that the deaf community can offer but the hearing community cannot (Chute & Nevins, 2002). Participants of this study had experienced the struggle of fitting in and revealed the emotional effects of feeling fearful, frustrated, isolated, and shame. Deaf role models can help other deaf individuals to navigate through these psychological, societal, and physical barriers in the hearing world (Cawthon et al., 2016). The deaf community also helps to develop the deaf identity—social identity (Dirth & Branscombe, 2018) and/or disability identity (Forber-Pratt & Zape, 2017), which is significant for one’s psychological well-being (Chapman & Dammeyer, 2017). As a whole, the role of the deaf community is not only a support for families in the early interventions of the deaf child (Benedict et al., 2015), rather it can provide social support throughout life’s journey and help to maintain well-being. Connecting to the deaf community would also assist the deaf person person to discover their deaf identity (Chen & Chen, 2014). Hence, it is important that the deaf people in Malaysia further develop their deaf identity. As for future research, it is recommended that research could focus on the Deaf identity and well-being of the deaf youth in Malaysia.

Limitations and Recommendations of Study

This study is limited to the Chinese deaf participants’ retrospective lived experiences in Ipoh from the year 1990 to 2019. As this study focused only on the Chinese ethnic deaf people, their lived experience is within the context of Ipoh Malaysian Chinese culture. The ethnic Malay, Indian, and native people in Malaysia have a different culture, language, and religious background. Their lived experience and sense of belonging as deaf people may be different from the results of this study. Since the sense of belonging serves as a protective factor in a person’s well-being (Libbey, 2004), it is suggested that future studies could explore the social experience of the difference races in Malaysia. It would provide useful insights to design strategies to build a better sense of belonging in their community.

On another note, this study was done before the COVID-19 pandemic. The pandemic has presented many challenges and new opportunities to the social lives of the deaf community worldwide. This includes meeting other deaf people from other countries. Perhaps, the awareness and connections to the deaf communities worldwide would provide an extended sense of belonging, that would indirectly increase the well-being of the deaf in Malaysia.

Conclusion

Overall, this study explored the deaf person’s sense of belonging and well-being through their social experiences in Malaysia. The sense of belonging played an important role in the well-being of the deaf person. The results revealed the deaf participants’ struggle to fit in, the emotional effect of it, and their search for a sense of belonging through quality connections that are inclusive, connective, and equal. This study further highlights the importance of inclusivity of deaf people into both hearing and deaf communities so that they will have a healthy sense of belonging. An emphasis is placed on the importance of better communication through sign language within the family and extended to the community, which promotes inclusivity. The deaf community also plays an important role for deaf individual to gain a sense of belonging which would help maintain psychological and social well-being, and reduce the possibility of mental health issues.