The social construction of ‘deafness’: explored through the experiences of Black South African mothers raising a deaf child

Participants

Six Black South African hearing mothers who are raising a deaf child formed the participants of this interpretive qualitative research. The women’s children were between the ages of 3 and 8 years at the time of the research. This age range was chosen as it is during these developmental years that the relationship between a deaf child and his or her family, specifically the mother, may become particularly complicated. Communication and interaction with the child’s outside world start to play an important role in this stage. Furthermore, these years form the foundational schooling years (Kolucki & Lemish, 2011). Thus, it was thought that it is at this stage that mothers are faced with various issues they may have to grapple with. All of the participants live in townships (informal settlements) south of Johannesburg, South Africa. English is their second language, although all six women could understand and converse in English. Interviews were conducted in English. Four of the women were employed and two unemployed at the time of the interviews. Each woman had a number of dependants in her care, with two women having four and one having five children in their homes. Participants were contacted through a school for children who are deaf based in Gauteng. As this study required a particular type of participant, a purposive, non-convenience, and non-random (Cozby, 2009) sampling technique was used.

Instruments

Data were collected using one-on-one, semi-structured, in-depth interviews. This allowed for an understanding of these women’s everyday lives through their own subjective experiences (Kvale & Brinkmann, 2009). An interview schedule consisting of 18 questions was developed by the researchers, with further follow-up questions if deemed necessary. These questions were open-ended aiming at encouraging participants to share their experiences in detail. The questions focused on the mothers’ experiences of raising their deaf child. These included their emotional responses to being a mother, their feelings towards their child, and their experiences with various medical professionals, family, and society members in relation to them and their child. Some of the questions included the following:

Have you had to face certain challenges or deal with certain thoughts and feelings?

When the Doctor told you that your child was deaf, what did you first think of this?

What did the traditional healer tell you about your child’s deafness (causes, condition and implication of condition) and what you could do about it?

What did you feel when you were told that your child was d/Deaf and heard more about the condition?

Do you feel any different having a deaf child? What are some of these feelings?

Procedure

The Government Department of Education gave permission to access the specific school for deaf children and the School Principal was engaged about the research. Thereafter, participants were sought. Participants were given a Participant Information Sheet detailing the research, and once they had agreed to participate, a suitable time and venue was arranged to conduct an interview. Prior to each interview, participants were asked to sign an informed consent sheet agreeing to be interviewed and for the interview to be audio-recorded. Each interview was transcribed verbatim and then analysed.

Ethical considerations

This study was granted ethical clearance by the University of the Witwatersrand’s Human Research Ethics Committee (non-medical). All the participants completed an informed consent form before participating in an interview. Although a free counselling service had been arranged prior to the interviews, none of the participants became distressed to the point of wanting or needing to make use of this.

Data analysis

The interview transcripts were analysed using Braun and Clarke’s (2006) six-step thematic analysis approach. This is an analytic technique that allows identifying, analysing, and reporting patterns present in data in order to describe the data in rich detail (Braun & Clarke, 2006). Researchers familiarised themselves with the data by reading through it several times. The transcripts were then coded for any interesting features. All the common codes that were prevalent throughout the six interviews were then extracted and reviewed. These key codes were then listed and overarching themes were identified. These themes were reviewed, and through an analysis of a number of sub-themes, seven major themes were reviewed, identified, and named (Braun & Clarke, 2006). Both researchers independently followed this above process on the data, thus ensuring these themes were checked and validated. Both authors agreed on the final thematic structure. Finally, an analysis and discussion of each theme was produced, which will follow below.

Deafness is foreign and unknown

Research (e.g., Wallis et al., 2004) indicates that the majority of deaf children are born to hearing parents. All the women interviewed were hearing individuals and reported no prior knowledge of what it means to be deaf or have experience of specific needs of a deaf child. As a result, they all reported emotional, financial, and social strain upon first-time diagnosis of their child’s deafness.

Edith, ¹ mother of her 5-year-old deaf child, reported, ‘I don’t want to lie, I cried because it’s my first born in our family and in the family we don’t have deaf people’. Edith later added,

I don’t understand how am I going to cope with a child like that, you know? But they explain that there is a school . . . because she will go to the school and she will . . . she will learn and pass and she will be something.

Another mother, Fufu, who has a 4-year-old son, reported similar experiences:

. . . it was very difficult because I . . . I, I haven’t stayed with a deaf child before, I haven’t stayed with a deaf person before, I didn’t know how to communicate with a deaf person. So, it was so difficult I didn’t know how I was going to cope with that.

She later recounted, ‘I wasn’t aware of those schools, I wasn’t aware of those other deaf people who are working . . .’

Literature suggests that the realisation that one’s baby is deaf causes a number of distressing emotions for a mother as the adjustment is no longer only to a new baby but is also to a baby with a disability. This leaves the mother feeling overwhelmed and confused (Sipal & Sayin, 2012). As discussed above, Kurtzer-White and Luterman (2003) describe how the diagnosis of a deaf baby is experienced as a death for a mother, surrounding the loss of the future she had hoped for. All six women voiced a certain expectation upon the arrival of their new baby. The diagnosis of their child as deaf created an initial inability to cope with their child. Furthermore, the lack of information about deafness made for a stressful and daunting experience for these women. The initial difficulty of diagnosis thus affects the well-being of the mother and her ability to cope with raising her child. It also affects her ability to relate to her child, creating further emotional strain on her and on her relationship with her child.

Increased awareness and normalising deafness

It was evident that these mothers initially had little awareness surrounding their child’s deafness as well as their child’s ability in this regard. However, when they learned more about what it meant to be deaf, they learned more about the ability of deaf individuals. This process of normalising deafness seemed to reassure them.

Fufu stated,

. . . now that I’ve seen there’s a . . . a . . . lady she use to come here, she was deaf mentor. So, she’s also deaf, she’s driving, she’s working, you see? So, when I looked at that then I said . . . there are lots . . . I’ve . . . err . . . I’ve met with a lot of deaf people and I’ve realised, no they are also normal just like anyone.

Nelisiwe, a mother of a 6-year-old boy, similarly reported a realisation, through exposure, that her child was not unique and alone in his deafness, which is what most of the women thought prior to exposure to other deaf individuals:

I accept it because you see the TV, maybe gonna see the people can’t talk. You see no it’s not only one child, it’s others, many people and its people like me, just don’t talk. Can use your hands, language, sign language . . . it’s normal like everybody.

Insufficient knowledge about the deaf community highlights an important concern for deaf people in South Africa. The larger hearing society has very limited knowledge about the nature and abilities of a deaf person. This was evident as no South African literature could be found that discussed deaf ability. This perpetuates the misconception that the absence of hearing is the absence of mind. As these women illustrate, through increased awareness, individuals would be exposed to the abilities of deaf people and deafness would be normalised. This would assist in moving away from an oppressive and stigmatising framework towards an acceptance and recognition of deaf people.

Christianity and traditional African beliefs about disability/deafness

Although all the women interviewed were Black South Africans, not one of them subscribes to traditional African beliefs or practices. They have renounced these beliefs for a Christian religious stance. When asked about their experiences and perceptions surrounding their child’s deafness, they reported an acceptance of what God has provided them with. Julia, a mother of two deaf children aged 6 and 3 years, explained, ‘. . . it is my gift from God that I’ve got . . . such child as she is . . .’ She later went on to speak of her rejection of traditional African beliefs: ‘No, I . . . as a Christian they just accept it. Because, everything that happened, it happened for a reason and the person who does that, it’s only God’.

Bennett, Deluca, and Allen (1995) discuss religion as a coping mechanism and a continual, stable support system in families with children with various disabilities. Religious beliefs and practices are claimed to contribute to one’s sense of empowerment and confidence in creating a future for one’s child with a disability. Disability, through a religious lens, is viewed as part of ‘God’s plan’ and is accepted as a gift. Through the mothers’ reports, there is a sense that one should not question what God has provided as it is part of ‘God’s plan’ and thus should be accepted.

Lerato, grandmother and primary caregiver of her 4-year-old grandson, stated, ‘I started to think, “no, let me not be disappointed, this is God’s plan, we can’t do nothing.” . . . what I experience, erm, I start to accept it’.

From the mothers’ accounts, it is also apparent that their religious beliefs filter out traditional beliefs. Many of the women were advised by older family members to consult with an African traditional healer but reported that was not part of their beliefs. Other mothers related that they did not believe a traditional healer could provide what an audiologist could. This is an interesting finding given that Pretorius, de Klerk, and van Rensburg (1993) report that 80% of Black South Africans consult with a traditional healer. Possible explanations for this finding may be that this might be an outdated account and that more Black South Africans are placing trust in Western medicine. However, this could also be the case in Johannesburg, an urban centre of South Africa, and perhaps traditional African beliefs are more prevalent in other areas in South Africa or among older generations. While this study found these religious preferences among the six participants, it is possible that larger studies may reveal differently. This is important to consider, and further research is needed as traditional healing has been a prominent and significant part of African culture for many years (Pillay & Kramers, 2003).

External pity and the mother’s rejection of it

In exploring the women’s experiences of their friends and family surrounding their deaf child, all of them reported a sense of external pity and most of the mothers took a distinct disliking towards this. Julia’s words are suggestive of this:

I accepted my baby the way she is and then when I tell my friends they were keep on saying ‘shame’, ‘askies’ [sorry] all those things and I was hating that . . . there’s nothing shame . . .

Julia rejected this pity and reported that she had accepted her children.

Lerato also described a complete rejection of this pity from others:

Ja [yes] they say ‘[child] is so beautiful, agh shame!’ . . . ‘look at him, he’s so beautiful, how can he be like that’. . . So, but in my mind, I just told myself that you know what, I don’t like that name saying ‘shame’, you see? I wanted them to accept.

Society attributes a negative identity to an individual with a disability and this individual in turn struggles against this imposed identity throughout their social life (Hayes & Black, 2003). Hayes and Black (2003) define pity as ‘an emotionally conditioned social response which marginalizes those with disabilities and better serves the interests of those who show pity than it does the object of their pity’ (p. 115). Pity as a discourse creates an authoritarian power relationship which denounces the individual’s autonomy and masks relationships of dominance and subordinance (Hayes & Black, 2003). Depictions of disability in media, religion, and history have described disabled individuals as an object of pity. This is then internalised by both disabled and non-disabled individuals which contributes to stereotypes, creating limitations and the discrimination of this minority group (Prilleltensky, 2004). Although these are claims about the minority group, mothers of children with disabilities are also at the forefront of the reception of this pity. Mothers experience this pity vicariously and directly. Pity disempowers both mother and child, as seen in the participants’ comments above, leaving mothers feeling angry. The rejection of individuals with disabilities as helpless and in need of care and assistance brought about the emergence of the social model understanding of disability (Prilleltensky, 2004). In this understanding, disability is perceived as a social construct of social barriers that prevent individuals who have impairments to participate in mainstream social activities (Shakespeare, 2006). It is evident that individuals with disabilities, and mothers of children with disabilities, reject pity and instead favour acceptance and recognition. This is important to consider in creating an integrated and equal society.

The discourse around the ‘superiority’ of speech and encouragement of speech and hearing

When asked about their interactions with medical professionals with regard to their deaf child, the majority of the women reported that they were advised to use various hearing devices. All of the women have been urged to speak to their child and to encourage their child to speak. While their children are deaf and cannot hear or speak, many of the mothers are hopeful that if they follow an oral (speech and hearing) approach, their child will eventually be able to hear and/or speak.

Fufu narrated,

. . . there are speech therapists at his school so they are trying to . . . they also forcing them to try to speak. So, I also have to . . . to encourage him to . . . to try to speak.

Similarly, Julia discussed what her child’s audiologist advised her: ‘that we have to put pressure on this little one to talk’.

Prilleltensky (2004) notes, ‘historically, the ethos in special education and in medical rehabilitation was to “normalise” people with disabilities and thus help them “blend in.” This “normalisation” took place through prohibiting Deaf children to sign and insisting that they speak’ (p. 14). Although presently in most South African schools children who are deaf are not prohibited to use South African Sign Language (SASL), the promotion and encouragement of speech and hearing still dominate. Although many shifts have taken place in recognising SASL as the language of deaf South Africans, it is evident that speech is still the dominant emphasis within most services and mothers of a deaf child are still encouraged to use speech over sign language. While it may be beneficial for a deaf child to be able to function in a hearing world, it is important for a child to be exposed to their natural language. Silvers (1998) discussed how this insistence of speech and limitation of natural sign language leave the child with limited access to language during crucial years of language development. This perpetuates the legacy of reduced literacy in the deaf community. The mothers in this study have all been encouraged to favour speech over sign language. While this may provide their child with access to the hearing world, it restricts access to the deaf world and in turn may have a negative impact on their literacy in the future, as well as on their identity. This results in increased stress levels for the mothers.

Barriers to communicating with her child

All of the mothers reported difficulty in communicating with their child. These mothers had no knowledge of the deaf nature or sign language prior to their child’s diagnosis and presently have a very basic knowledge of sign language. Hence, communication with their child is a difficult and stressful task. Lerato is quoted in this regard: ‘Ah, it’s too complicated my sister, I’m telling you. I mean, eh, sometimes you want to talk to him, sometimes you want to explain, to tell, “listen, you can’t do this.” You see? It’s very difficult’.

Edith reported a similar difficulty when asked about her experiences of raising her deaf child: ‘Yoh. It difficult but I’m patient, because sometimes I don’t know how to explain, if she wants something . . . I don’t understand what she want so but it’s difficult’.

All six women recounted a good relationship with their child; however, four of the six mothers reported their child being short tempered and aggressive. Edith stated, ‘she have short temper. And when she wants something if I don’t . . . I didn’t respond she . . . she will fight with me and beat me’. Similarly, Lerato reported, ‘he was angry; he can even hit us with all things at home. He can go inside the room, smash everything’.

A study by Hintermair (2006) found that a mother’s stress levels directly impact her deaf child’s socio-emotional problems, including conduct problems such as anger and temper tantrums. The study further indicated that mothers who have access to necessary resources presented with less stress, which in turn influences the well-being of their child. It was evident with all the mothers in this study that their child’s aggression was apparent when there was a barrier in communication between them. This frustration led to aggressive behaviour and temper tantrums in their child. The more the mother and child were able to communicate effectively, the better the quality of their relationship. This suggests that communication plays an essential role in the quality of the mother–child relationship and resources in assisting the improvement of communication would benefit the well-being of both mother and child.

Why me? Attribution of cause and the emergence of blame

The women were asked about their experiences in raising a deaf child, as well as their reaction to the news of the diagnosis that their child is deaf. Most of the mothers recounted complete distress or confusion and were initially conflicted in trying to understand why this had happened. Many of the women questioned ‘why me?’ upon the diagnosis of deafness in their child. Julia stated, ‘I’d look at this child, it was so difficult for me to accept it and then I keep on asking myself, “why me, what have I done?” you know all these questions?’

Similarly, Tshego, mother of her 5-year-old daughter, said, ‘Ja [yes] it was hard I couldn’t believe it as well because first thing that I ask, I say but “why me?”’ From the mothers’ reports, it seemed that they struggled with their plight and for a reason for having a deaf child.

Hingley-Jones (2005) discussed experiences of parents raising children with autism. Feelings of parental blame were evidenced, and the study argued that blame could have been a product of the preoccupation with a simplistic aetiology of autism. Blame was thought of as an extension of parents managing unconscious feelings of guilt and shame surrounding their child’s disability. Although this study involved parents of children with autism, it is felt to be relevant to this study as these mothers are also raising children with a disability that is unfamiliar to them in that they are hearing and their child is deaf.

The ‘why me?’ questions could also reflect the influence of Christian beliefs and/or African traditional beliefs. A Christian response could include asking God why she has been given a deaf child. It could be perceived as a punishment by God for a ‘sin’ or past behaviour (Duchan & Kovarsky, 2005); however, this was not the case in this study. An African traditional belief response may include supernatural causes or ancestral punishment. de Andrade and Ross (2005) conducted a study with 15 African traditional healers aiming to unpack their views regarding deafness. They found that the majority of the traditional healers reported that deafness was caused by ancestors. These traditional healers reported that this could be a result of punishment by the ancestors or an ancestral calling to become a traditional healer. While the women of this study reported rejecting traditional beliefs and consultation, their reports appeared to be influenced by their community’s beliefs surrounding the cause of deafness. This supports the earlier argument that disability, and for the purposes of this article, specifically deafness, is largely socially constructed. Furthermore, it suggests a maternal experience that involves receiving and having to tolerate others’ projections regarding the more unpalatable aspects of disability, leaving mothers to feel shamed and blamed (Harvey, 2015).

From these reported maternal experiences, it appears that the mothers’ backgrounds and current social and cultural circumstances influenced how they understood the cause of their child’s deafness. All of the women seemed to portray a sense of self-blame when they first had to deal with the diagnosis of their child’s deafness.

Several limitations are apparent in this study. The sample is small and the study could be enhanced with a larger participant size. The sample is also limited to an urban population. All of the interviews were conducted in English which is the women’s second language. This was a limitation in one particular case where the mother interviewed could speak and understand limited English. Further research would benefit from conducting interviews in the women’s first language.