Motherhood and the disabled child in contexts of early education and care

Abstract

This article presents a theoretically based narrative analysis of conversations held with six women in South Africa who position themselves as mothers of disabled children. We examine the dominant socio-cultural narratives that impact the lives of the mothers as they enact motherhood, and the counter-narratives that emerge in the process. Three key themes are discussed: struggle, resiliency and agency; motherhood and the intersections of personal histories, spirituality and Ubuntu; and the economics and politics of negotiating access to social benefits, including early intervention and education. The study highlights the contextual, situated and diverse nature of motherhood and the disabled child in contexts of early education and care.

Keywords

Cultural narratives disabled child motherhood South Africa

Introduction

Over the years, researchers and scholars across disciplines have examined conceptions of motherhood in societies (e.g. Akujobi, 2011; Byrne, 2006; Goodwin and Huppatz, 2010). A key argument in these debates is that motherhood is culturally defined within social, cultural, economic and historical contexts. In this article motherhood is defined beyond the role of the biological mother. It refers to adults within the family and social adults who play an important part in nurturing, socialising, educating and caring for children (Harkness and Super, 1995). In a collective child-rearing context, which is common in Africa, Nsamenang (1992) notes that an expanded concept of motherhood is visible. Grandmothers, relatives and older siblings contribute to the care and education of children.

Mothers receive cultural messages regarding the roles they should assume and how these roles should be produced. Underlying these messages are discourses, which form ways of representing phenomena in a visual, oral or written form (Lupton and Barclay, 1997). The meanings that people construct around a particular phenomenon, such as motherhood, are impacted by the discourses that circulate within the socio-cultural context. In other words, through their embedded assumptions, discourses create expectancies about relationships, and influence thoughts and behaviours that shape the nature of the interactions (Robinson and Robinson, 1995).

Despite decades of feminist activism and scholarship to trouble dominant representations of mothers, mothering and motherhood, these images are still evident in diverse cultures and persist in institutional and social practices (Glenn, 1994; Goodwin and Huppatz, 2010; Ruddick, 2001). They continue to powerfully shape women’s lives and their everyday practices and interactions. Ruddick (2001) argues that the image of good mother remains as a form of social regulation and influences the social and cultural positioning of mothers. Motherhood ideologies are seen to define women and promote the norms against which they are judged, and against which they evaluate themselves. Good mother discourses require that mothers present themselves in culturally and socially acceptable ways, meeting the norms of society and community. In most cultures mothers are held accountable for the care, education and social and emotional development of their children. In other words, mothers are seen as ultimately responsible for the way their children turn out. Thus, a critical identity issue for many women is being constructed as a good mother (Collett, 2005). Thus, motherhood is a highly visible role (although the mother as a person can be invisible) and it involves certain socially constructed expectations.

The position that mothers of disabled children occupy in relation to dominant representations of motherhood and constructions of disability has been well documented in contexts of the North. Psychopathological models of mothering and the disabled child have constructed the lived realities of mothers and their disabled children in terms of notions of ‘normality’ and ‘abnormality’. Professionals located within these models adopt the frame of personal tragedy to explain the mothers’ experiences of caring for their disabled children, and the negative impact of disability in the experiences of mothers with disabled children is foregrounded (Leiter et al., 2004; Taanila et al., 2002). Mothers are often marked as having a ‘disabled identity’. They are viewed as in denial, unrealistic, over-protective emotional, confused or a problem to professionals (Carpenter and Austin, 2007; McLaughlin and Goodley, 2008). In contrast, sociological models highlight that individual stories about disability are shaped by larger cultural narratives about what it means to be different. The lens shifts to social arrangements, social conditions and structures and the inherent power imbalances that result in disabling attitudes towards and representations of mothers and their disabled children (Barnes and Mercer, 2007; Runswick-Cole, 2007; Ryan, 2005). Therefore, it is argued that experiences of motherhood and the disabled child are local, situated phenomena – the position taken in this article.

A review of literature internationally suggests that the research agenda on motherhood and disability has been dominated largely by the negative impact of disability. The focus has been on how having disabled child intensifies family demands and creates major challenges to the well-being of parents and the family as a whole (e.g. Beck et al., 2004; Erickson and Upshur, 1989). In countries of the South, a similar pattern in research emerges (e.g. Chimhenga and Musarurwa, 2011; Gupta et al., 2012). Studies have highlighted that parents of disabled children have poor mental health, experience emotional distress, are socially isolated and are generally in distress. Furthermore, studies show that mothers are usually the primary caregivers of their disabled children with fathers playing a limited care and support role (Kermanshahi et al., 2008; Nabawy Ahmed Moawad, 2012).

However, Ryan and Runswick-Cole (2008: 199) provide an alternate representation and note that mothers of disabled children do develop ‘special competence’ from their experiences. They highlight the role of activist mothers who work hard to bring about change on behalf of their children. Similarly, McLaughlin and Goodley (2008) also shed light on a marginalised perspective of familial care for disabled children. Using a research project focusing on parents of very young disabled children, she argues that families challenge the cultural stereotypes associated with care of disabled children. The inclusion of a disabled child is seen as having value and contributes to the development of a new family form.

There are a limited numbers of empirical studies, including studies undertaken in the South, that have challenged deficit and ‘tragedy’ assumptions about parental crisis and maladjustment, and have examined social capital, adaptive coping and resiliency among mothers and families (Brasfields, 2008; Kid and Kaczmarek, 2010; Nabawy Ahmed Moawad, 2012; Thuy and Berry, 2013). These studies have suggested that although parents, in particular mothers, experience numerous difficulties, many of them appear to manage their roles with optimism, agency, flexibility and resourcefulness.

In the study reported in this article, we explored motherhood through the narratives of mothers and caregivers of disabled children in the South African context. For the purpose of this study, we shall refer to the six women in the study as ‘mothers’ as they play the mothering role and do motherhood. The aim of the study was to examine how the women’s experiences are marked by dominant cultural narratives of motherhood and whether there is evidence of counter-narratives in the stories which disrupt dominant representations of motherhood. We were committed to trouble dominant ‘personal tragedy’ constructions of mothers of disabled children and motherhood. The research questions were as follows: What are the nuanced ways in which the mothers of disabled children enact and experience motherhood in contexts of early education and care? What meanings do participants make of motherhood within the social, political and relational networks of their lives?

Conceptual framework

In analysing the experiences of biological mothers and those that positioned themselves as mothers of children with disabilities, this study drew on several concepts which helped to make sense of the narratives of the women in the study. At the outset, the term cultural narrative proved to be helpful in understanding the normality of motherhood. Bramberg (2004) explains cultural narrative in terms of how people in society use key interpretive frames of reference as normalities to guide their daily lives. In reference to motherhood, the identity and activity of mothers stem from the commonsense frame of reference that biologically women are mothers and should therefore nurture and care for children.

The dominant and natural understanding of motherhood and how to be a mother circulates in society and creates expectations. Mothers are positioned in intersubjective relationships where they take on selfless roles in supporting children (Brown et al., 1994). When women actually perform their roles as mothers according to expectations, then they collude with the dominant framing of motherhood. The pressure to conform stems from the need of mothers for affirmation of being good mothers. The latter associates them with being caring, compassionate, responsible and in tune with the needs of their children and their families (Hays, 1996; Wearing, 1984).

The works of Bourdieu (1990) and Bourdieu and Wacquant (1992) provide the sensitising concept of habitus to understand the above. The notion of habitus, although criticised for being ‘overly deterministic and pessimistic’ (Mckeever and Miller, 2004: 1178), is helpful in understanding the way in which cultural narratives are kept alive in society. When mothers meet the naturalised expectations of being a good mother, they perform within acceptable boundaries of the narrative and give it life. When they resist, they run the risk of being marginalised and labelled as bad mothers.

In Bourdieu’s (1990) concept of habitus people are viewed as subjects who are social beings. Who they are and what they do is influenced by their historical and cultural context or what he terms the social field where certain values are upheld. As subjects people will align or disassociate themselves from these values. The habitus is key to developing a person’s knowledge and understanding. This in turn influences their thinking, doing and feeling (McKeever and Miller, 2004). How a person is socialised influences his or her ability to produce and reproduce ideas and actions of being a mother.

With regard to mothers and doing motherhood with children with disabilities, the dominant cultural narrative could function as noted by Gilligan (1993) as a fact of mothering. McKeever and Miller (2004) note that in an ‘abilist’ society, it is not uncommon for parents to become highly aware that the bodily and sometimes the mental capital of their children is devalued. This has implication for how parents enact their relationships with their children. This might mean measuring up to the ideals of being a good mother. When a mother of disabled child produces and enacts the values and practices associated with the dominant cultural narrative, this can result in oppressive behaviours that disadvantage her. For example, Veck (2002) notes how the non-disabled status of the mother places her in tension-filled situations of her role in the life of her disabled child. Mothers want to meet dominant expectations but their actions could run the risk of being interpreted as putting constraints on their children, limiting their opportunities and aspirations. From the margins of motherhood, these mothers find it difficult to speak out about the tensions they experience as they might run the risk of ostracism, marginalisation or being labelled as bad mothers.

Since this study dealt with women from a particular situation in a disadvantaged context, it was necessary to explore the socio-cultural dimension of motherhood. We drew on ideas from a Vygotskyian perspective (Vygotsky, 1978). This perspective foregrounds how our consciousness of who we are and what we do has socio-cultural origins (Wertsch and Tulviste, 1994). Mothers construct their identities by engaging with complex processes in a shared space and through participation in situations that implicate them as mothers. The complexities arise when meanings are negotiated, renegotiated and contested.

The socio-cultural perspective of motherhood makes salient the fact that how to be a mother and how to do motherhood is situationally and contextually defined by the individual and by the cultures in which their lives are embedded. Hence, this standpoint creates greater room for counter-narratives to develop. The agency of the human subject receives greater attention in the socio-cultural perspective. Mothers do not just perform their lives according to dominant cultural narratives with fixed ideas of performance. They actively make sense of their experiences. From an agency perspective, they are therefore able to articulate, enact and resist claims on motherhood. Fluidity and flexibility are associated with being mothers and doing motherhood in the context of the social, political, historical, cultural and economic arenas.

Research methodology and design

A narrative inquiry was undertaken as a lens into the complexities of lives and experiences of the mothers. Central to narrative inquiry is the contention that stories give meaning to people’s lives. Thus, stories are treated as data. Clandinin and Connelly (2000) assert that experience happens narratively, and that narrative inquiry is in a sense a kind of narrative experience. We were interested in what stories tell us about each mother’s self and the nuanced ways in which life is lived.

Participants in the study were six mothers and carers of disabled children. They were accessed through two centres for the disabled run by non-governmental organisations (NGOs). Initially, seven mothers were included in the study based on discussions with the lead agencies about availability of these types of mothers and the vulnerabilities associated with interviewing them. One of the mothers withdrew owing to personal issues that emerged at the time of the interviews. We envisaged that a small sample would enable a focussed understanding of the nuances of motherhood and mothering.

The mothers were between the ages 31 and 48 years. Only two of the women were biological mothers to the disabled child. The profiles are one grandmother, one foster mother, one paternal aunt and one partner to the biological father.

Thabi is 32 years old. She was asked to care for a child with a disability from the family when she got married. She lives with her husband. Thabi has a 5-year-old son of her own. The child with a disability is an 11-year-old quadriplegic. All adults are unemployed and rely on the government’s social grant for two children.

Fikile is 31 years old. She lives with her husband and two children in a shack. The 7-year-old is physically and mentally challenged. Both she and her husband are unemployed. They receive a child support and disability grant for their children.

Clara is 48 years old who works as a cleaner at a primary school. She fostered three of her late sister’s children. She has two of her own children. The 5-year-old is hyperactive and aggressive and experiences other social and emotional problems. All three children received a child support grant from government.

Yandiswa is 42 years of age. She is a caregiver at a centre for children with disabilities run by an NGO. She cares for her grandson with cerebral palsy who is aged 2 years, 4 months. The father of the child is Yandiswa’s son and he is unemployed.

Faith is a 39-year-old caregiver at a centre for children with disabilities. She has four biological children from a previous relationship. Faith also cares for her current husband’s 10-year-old daughter who is a quadriplegic. Although the child lives at a residential centre for the disabled, the couple plan to have the child live them soon, once their new home is ready for occupation.

Preesha is 33 years old and is currently unemployed. She is married with two children, a 14-year-old girl and a 10-year-old boy with cerebral palsy who also has severe behavioural and health problems.

Participation in the study was voluntary. Ethical principles of anonymity, confidentiality and right to withdraw from the study at any stage were shared with the participant. Informed consent was obtained from the two centres and from each of the mothers. Pseudonyms are used to protect the identity of the participants.

The interviews began with the question: ‘Can you tell me the story of your experiences of being a mother to a child with a disability?’ The mothers had the liberty to speak from their own perspective and to tell their stories of their lived experiences. In general, they decided to start at the beginning with the birth of the child, and told their stories as temporal narratives. Each interview was a dialogic process. We were committed to a less imposed process, privileging the telling of the experiences by the motspecific.

A set of open-ended questions was structured as a guide to the interviewer. However, the narratives unfolded rather spontaneously and the issues that the mothers raised served as starting points for exploration. Interviews were digitally recorded and transcribed verbatim.

We understood that the individual mothers were unique beings and engaged with each story in depth. We also wanted to examine patterns of lived experiences that cohere among the mothers and the aspects of lived experience that place them apart from one another. In other words, we engaged in contextual, situated interpretations of the different levels of psychological, social and cultural reality in the individual cases and then relating them to one other. Josselson (2006: 7) argued for the need to search for the ‘commonalities and disjunctures that help us go beyond individual cases to larger frameworks of understanding’.

The first stage of data analysis involved reading and reviewing the transcripts for commonalities and differences in the experiences of the mothers as well as for shared perspectives on issues they raised. A detailed substantive coding process followed. In the next stage, categories containing clusters of codes were identified. Finally patterns or themes in the narratives were noted based on the shared experiences, perspectives or interpretations in the stories of the mothers. Transcripts were subjected to inductive analysis by the two authors. Each author/researcher examined transcripts in depth and produced written accounts, identifying emerging codes, categories and themes. These were discussed and deliberated on until agreement was reached on the analytical outcomes. Although the analysis was largely inductive, it was guided by the research questions, theory and previous empirical work.

Results and discussion

The women in the study spoke of motherhood in complex ways, often drawing attention to the cultural narratives that played out in their lives, how they positioned themselves in relation to cultural narratives and the counter-narratives they constructed to disrupt hegemonic representations of them encountered in social interactions. An interesting dimension that we observed was that in the telling of the stories, the women actively shaped and reshaped their experiences and the meanings they constructed, as noted in the study by Birmingham (2010). Through the stories, the mothers were able to reflect on and interpret past experiences and events; their current experiences and events; and their dreams, hopes and fears for the future. Three key themes that emerged from our analysis are presented in the following sections of this article.

Struggle, resiliency and agency

It was evident that the mothers experienced times of struggle, conflict and confusion, and yet their counter-narratives reveal underlying resiliency and agency. The mothers spoke of feelings of frustration and hopelessness in their interactions with medical professionals and educational institutions. Yandiswa narrated that on discovering that there was a problem with the child at 4 months, she took the child to the local hospital for screening, diagnosis and early intervention support and was told that the birth records were required. She felt angered when she discovered that the public hospital at which her grandchild was born had lost the child’s file that contained important birth records.

Preesha explained that she felt she was not listened to by her doctors and medical specialists who treated her child. She was keen that the child has an early intervention programme. She explains,

They … actually to be quite honest, why I turned to taking him to the centre (run by the NGO) because I wasn’t being listened to – like my money was just going. So we was paying cash for Dr D. Then we was paying Dr B. from City Hospital. And we weren’t … I found that nothing good was happening. Even Dr D. didn’t do much. He didn’t send my child for speech therapy. He hasn’t been going for occupational therapy, nothing of that sort. Every time when we would get to that topic, Dr D. would always tell me, I’m just rushing things, just wait. My child was always been sick with bronchial-pneumonia; he is often admitted for that. So the doctor’s words to me was – just wait.

From the dialogue with Preesha, it was evident that every time she raised the issue of some kind of intervention for her child with doctors she was silenced by the powerful cultural narrative that constructed her views as without value, and required her to ignore her intuitive thoughts to act as told by experts in the medical profession. Cultural narratives depict beliefs of both how things are and how things should be (Austin and Carpenter, 2008). Preesha does try to find justification for the doctor’s attitude by stating that the child had serious medical problems which were given priority. However, the child was now 10 years old and had not benefitted from an early intervention programme until he was admitted at the early childhood centre for care and education a few weeks prior to the interview.

Our analysis of the narratives indicated that in the case of the six women, the disabled child was accepted and supported by the immediate family, friends and neighbours. Fikile’s narrative showed her living up to the expectations of the dominant narrative of ‘good mother’ and following the culturally appropriate trajectory of motherhood.

My family and relatives they appreciate what I am doing. My sister has a daughter like my one. My family gives me no problem. They understand my situation. They tell me that I am doing a good job. They tell me that I am caring. They say how come I have my children and I take care of the other children. I have passion. I learnt from my mother. My mother would take care of other children besides us. When people ask how I can raise children that are not my own, I say my mother could do this and this is how she raised me … to take care of others. I did not feel angry when she took care of others. It was not painful. We saw ourselves as a family and other children as being part of us.

The mothers were supported in their experiences of emotions of grief, joy, uncertainty, hope and fear. We will return to this finding in the following theme. This finding was illuminating and contrary to much of the literature emanating from the African context which foregrounds the stigma attached to disability and negative impact on family (e.g. Chimedza and Peters, 1999; Kapp, 1994). Furthermore, most mothers felt they were coping with raising the child with a disability.

However, there was evidence of negative attitudes associated with those children who displayed behaviour difficulties such as aggression and hyperactivity as in the case of Preesha’s son and Clara’s foster child. It was these two mothers who talked of emotional strain and stress in social interactions outside the circle of immediate family and friends. Clara explains,

When the preschool teacher gives him a task he will not do it. Not pay attention. Not do things. He goes outside the room on his own. He broke some items from the centre. They called me to show me this and now she says I must pay for what he broke. When she tells me about these things I normally don’t say anything. I replace the items. I do what I am supposed to do. I feel this is very painful and I am helpless not knowing what to do.

Preesha and Clara are of the view that in these social interactions their role as mother is placed under scrutiny, and their children are devalued. The mothers are measured against dominant normative representations of the ‘good mother’. The implication made is that their children’s difficult behaviours are the result of ‘poor mothering’. Clara’s comment above illustrates that cultural narratives may be too powerful to resist at times (May, 2004).

However, all the mothers in the study, including Clara and Preesha, constructed themselves as ‘good mothers’, despite the fact that at times outsiders may not appreciate and understand them as individuals and their circumstances. They were able to justify their constructions of their selves, and they showed a strong sense of identity, autonomy, self-efficacy, resiliency and agency. Thabi talked about how she acts as a resource to the pre-school teacher and provides advice on how to interact with and communicate with her child who has speech and language problems. Preesha and Yandiswa spoke of her quest to access education and care for the children despite the various exclusionary pressures they encountered. Yandiswa made the decision to remove her child with cerebral palsy from the maternal mother’s home and take over his care. The paternal mother was an alcoholic and lived in poor socio-economic conditions. Yandiswa, who is a caregiver at a centre for the disabled, draws on her social capital to provide the child’s unmarried mother and her son, the child’s father, with knowledge and training on how to stimulate the child and provide therapy.

The issue of fathers and fatherhood in the context of raising a disabled child is an intriguing issue that emerged in the findings. In three of the households, father figures were present in the form of biological fathers or partners to the mother. The other three households were female-headed households, a common feature in the African context. Preesha, Yandiswa, Faith and Thabi spoke proudly of the support from the men in the family, despite times of stress and tension. Yandiswa’s son, the disabled child’s father, is unemployed and spends time with the child assisting with his physical needs and stimulating him by taking him outdoors for walks and so on. She laughed as she narrated how the neighbours playfully chide her son for taking the baby out in the sunshine on walks, by asking him, ‘Do you want to make the baby black like you?’ Yandiswa’s partner provides for the family financially, although his biological children do not live in the household. Faith narrated how it pained her partner to have his disabled daughter, whose mother abandoned them, placed in a residential care centre. She spoke of his frequent visits to spend time with the child, and his determination to have the child back with him once he has acquired his own home. Thabi had the following to say about how her husband supports the child:

My husband assists in doing the same things that I do for the child. Even if happen to go somewhere I know the child will be bathed and fed. He always encourages me to look after M and he also says I am looking after his children very well and M included. And whenever I hear that I become strengthened and motivated. He is fully supportive … My husband hardly gets angry or frustrated by the child and her situation. He does get angry at the other children who are staying with us except M.

The dominant narrative in literature from Africa suggests that fathers often abandon the disabled child or are invisible in the care of the disabled child (e.g, Grut and Ingstad, 2005). It is likely that there is a contradictory and alternate narrative on fatherhood and the disabled child that needs to be the focus of future research, as in the recent study by Navalkar (2010) in India.

Motherhood and the intersections of personal histories, spirituality and ‘Ubuntu’

The findings suggest that counter-narratives to disrupt the dominant narratives of taboo, stigma and tragedy are embedded in the mothers’ histories, religious beliefs and the philosophy or ethic of Ubuntu. Ubuntu is a humanistic worldview that emanates from southern Africa, and would be upheld within the individual’s social field. It is the essence of being human. A person with Ubuntu has allegiance to and affirms one’s fellow human beings, and has a sense of community, compassion and shared concern for the rights of others. Tutu (1999) explains that to oppress, humiliate or diminish others is not Ubuntu.

The findings in this study show that the ideology of Ubuntu permeates the lives of mothers and the disabled children, alongside the contradictions of exclusion and oppression discussed above. In the case of all six women, motherhood happens within networks of families, relatives, friends and neighbours. Preesha narrated selfless ways in which her niece and her neighbours provide support in times of need. She spoke in admiration of her niece:

I got my niece who’s like my child’s second mother. She also very good with him. She is young … just completed matric and is looking for a job. I always told her … this is my worst fear … if something happened to me, she must take over him. I … I feel like very … I just feel like she’s the right person for him, If something happens to me. She’s just this loving somebody and he takes to her very well.

On the death of her young sister, Faith took her sister’s three children under her care, including a daughter who is hearing impaired. Her story of her agency in engaging with various institutions to have the child’s hearing assessed and diagnosed, and eventually accessing education for the child is illuminating. Now she is committed to being mother to her partner’s disabled daughter whom she plans to move from residential care to the home she and her partner will set up soon.

Thabi unofficially ‘adopted’ a child from her husband’s family soon after she married. She realised that the child was not developing according to the normal developmental milestones. She reflects on the decision she made at the time:

I grew up in a very difficult situation where I could not have the type of support and love from my mother, and that to me has made me to realize that when I first met the child that I feel that I can take care of the child. I’ve always through my background … I’ve always wanted to look after other people. So I asked my husband’s grandmother that can they … can I be given the child so that I can take care of her through what I’ve learnt, through what I’ve missed growing up … not having the type of support and love from my own mother.

Thabi also spoke about how relatives and neighbours function as networks of care and support. She leaves her disabled child with a relative when she has errands to run. The relative takes care of the child without payment. In return, Thabi supports the relative when she needs help. Thabi had the following to say about how her neighbours assist her:

When I do not do my laundry my neighbour becomes concerned. She voluntarily offers me foam powder and fabric softener to wash the child’s clothes. She also assists me with the food to feed the child at times … I think the neighbour sees sometimes that when I do not do laundry or buy food that maybe there is a need.

Faith expressed similar sentiments to explain her embracing nature, and alluded to the fact that her personal history moulded her into the person she is today. She spent the greater part of her childhood away from her mother who worked in the city. Faith grew up with her grandmother in a rural context. Her father had abandoned the family at an early age. She further explains,

But my mother managed to bring us up with love. She taught us that you have to love in whatever condition. Love unconditionally … she taught us about forgiving.

All six mothers shared that they were spiritual individuals, and that they held strong religious beliefs. The excerpts below illustrate this:

I believe that God has given an opportunity to me. He has chosen me to make a difference in her life. God wants me to help her. I want to do more. I want to open up a centre for children with disabilities. I can help more children. (Thabi)

The church, they take care. They do the prayer and they tell the mother that God will help the child and look after the child. Don’t hurt the child and look after the child because God gave you the child. (Fikile)

The mothers shared that their religious beliefs sustained them and gave them strength and courage, and served to disrupt counter narratives in their lives. Many of the mothers alluded to the fact that they were special as they were chosen by God to the role of mother to a disabled child. This could be conceived as a form of agency as the mothers try to construct a self that is uniquely their own in the face of constraints and challenges. It also draws attention to the situated, contextual nature of human identity.

The stories above show that the mothers lives are embedded in and influenced by social expectations, personal histories, ideology, culture and religious beliefs, which in turn influence how they perform and experience motherhood of the disabled child. Drawing on the arguments of Grech (2009) we stress the importance of engaging with the nuances of the socio-political context when attempting to understand motherhood and disability as it is within context that motherhood is negotiated and lived.

The economics and politics of negotiating access to social benefits

Since the democratic government came into power in 1994, South Africa has passed legislation and released policies to protect the social rights of its citizens. Many of these policies are considered among the most enlightened by international standards, including the Constitution of the Republic of South Africa (Act no. 108 of 1996); South African Schools Act no. 84 of 1996; and Education White Paper 6: Special Education – Building an inclusive Education and Training System (Department of Education, Republic of South Africa, 2001). Despite this, social disadvantage, in particular poverty, was a theme that was weaved into the stories of the mothers. The mothers did not construct themselves as victims but rather drew our attention to the barriers to accessing the social resources of the country. However, all six mothers were positive and spoke of coping in the midst of financial insecurity. The prohibitive cost of specialist medical care, inability to access assistive devices such as wheelchairs and high cost of transport to access early intervention and therapy programmes present on-going difficulties in negotiating motherhood, particularly in families where key members are unemployed or experience employment insecurity. The study highlights the need for disability-specific as well as mainstream poverty-reduction programmes to build assets and reduce the vulnerability of families and the social networks in which they are embedded and which are currently supporting mothers and children. The majority of mainstream development and poverty alleviation programmes do not reach children with disabilities and their families. In the global South, disabled individuals and their families are among the most excluded and are trapped in a vicious circle of poverty and disability (Grech, 2009). Development can be inclusive and reduce poverty only if disabled individuals and their families have access to opportunities, share the benefits of development programmes and participate effectively in decision making. Grech (2011) argues that programmes will be most effective if they build on the strengths and resiliencies of families, communities and social networks.

Many of the mothers have experienced marginalisation and exclusion when trying to access social resources and service-related information. Yet Education White Paper 6 has proposed a sound model of community-based support, and comprehensive training is on-going to build the capacity of these structures in districts throughout the country. Thabi and Preesha narrated the difficulties she has had in trying to access resources, support and education for the children. Thabi explained the lack of success she has had in acquiring a new wheelchair for her child through the government’s social services. Two special schools rejected Preesha’s application for admission on grounds that the child was not toilet trained and was aggressive. To deny a child education on these grounds is a violation of legislation and social policy. Special schools have to admit children from the age of three, and the child has a right to early intervention programmes and therapy to address all development needs and behaviour problems.

It is evident that policy imperatives are being subverted to exclude disabled children from low-income families who cannot challenge this kind of oppression and exclusion. Preesha and her husband do not have the political power to contest the violation of the rights of their child enshrined in legislation and policy. Oppressive cultural narratives continue to circulate in the democratic South Africa, and these block access to early education and care for disabled children from economically disadvantaged background. The study indicates an urgent need for monitoring and accountability mechanisms to be put in place to protect rights of disabled children, particularly those from poor families.

Conclusion

The study presented in this article was able to illuminate and theorise the contextual, situated and complex nature of motherhood and the disabled child in an African context. Grech (2011) asserts that for decades inferences and accounts about disability from North have been transported to the global South. Arising from this influence, issues such as parental stress, grief, mourning and care have dominated research agendas in the South. Singal (2010) calls on researchers of the South to move away from a tragedy model of disability, to a greater appreciation of people with disabilities and their families as individuals with considerable agency. This equally applies to research with mothers and carers of disabled children.

We argue that issues critical to socio-cultural and political contexts of the South have been neglected in research, and the social and material realities of the lives of disabled children and their families in the South remain under-theorized. For example, a human rights approach to research on disability and development is North orientated. In the South, the notion of human rights is often different from the personal, individualistic North-oriented conception of human rights (Hellsten, 2004). In the South, it is multi-dimensional and context specific. The study showed that the mothers and their disabled children often have their human rights violated as they face exclusion and marginalisation from different levels of societal systems.

A key issue raised in our study is that motherhood does not happen at the individual level but within social networks and community. Furthermore, the ways in which the participants enacted motherhood and engaged with issues surrounding their disabled children were embedded in social encounters. This perspective on motherhood is the essence of the philosophy of Ubuntu, which we argue epitomises the crucial difference between approaches to mothering and the disabled child between the North and the South. This finding in our study highlights a space for meaningful dialogue from the global South to the North. Ubuntu is an ethic, a unifying force and sense of communitarianism. This lived experience of community offers a challenge to individualism and isolationist tendencies in many cultures of the North. Ubuntu offers a space of belonging with others and caring for each other’s well-being. While it may be risky to generalise, motherhood at an individual level may not exist in African contexts, particularly in the case of economically disadvantaged families.

The study in this article has sought to achieve what Lindemann Nelson (2001) refers to as using the counter-story for retelling narratives and bridging the gaps in dominant discourses of motherhood and the disabled child that are often invisible. Stories of agency, resistance, coping and community are seldom heard. The counter-stories in this study as also evident in corrective literature, for example, Ryan and Runswick-Cole (2008) and McLaughlin and Goodley (2008), have the potential to address often distorted assumptions about the identities of mothers of disabled children, providing more authentic insight into their lived realities.

Our reflections on this research made us realise that narratives were a valuable approach to create a space for mothers of disabled children to make meanings and express their understandings of their life experiences. Many of the women in the story appreciated that for the first time someone was interested in their stories of their lives. Birmingham (2010) raises this issue in the context of her own research with mothers of autistic children. We also came to realise the power of narratives in that through their tellings the mothers came to understand and appreciate their own resilience and agency.

Footnotes

Funding

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

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