There are an estimated 200 million disabled children worldwide, of whom about two-thirds live in the Global South (World Health Organization 2011). Disabled children are comparatively more vulnerable to abuse, exploitation, neglect, and discrimination. They face reduced social participation and have less access to education and other social services than children without disabilities. These vulnerabilities are exacerbated in developing countries, where the level and quality of care, education, and treatment for disabled children in most cases fall far short of what is required (UNICEF 2013).

Where there are political instability and deep socio-economic problems, such as is currently the case in Zimbabwe, parents’ access to quality care, education, and treatment for their children is greatly compromised. For example, a report compiled in 2003 (and hence before the worst of the deterioration that occurred between 2003 and 2009) found that only 12.3% of people with a disability in Zimbabwe received financial assistance of any kind (Eide et al. 2003). According to the Leonard Cheshire Disability Zimbabwe Trust (Cheshire Foundation International 2010), Zimbabwean families with disabled children are among the most marginalised, socially excluded, and poorest groups in Zimbabwe. Increasing poverty levels, the HIV/AIDS pandemic, and other prevalent health conditions, combined with the economic hardships and a prevailing negative culture towards people living with disabilities, are some of the factors that contribute to Zimbabweans living with children with disabilities migrating to South Africa (Cheshire Foundation International 2010).

As Southern Africa’s richest, and one of its most developed, countries, South Africa boasts services for disabled children that are relatively more widespread and advanced than in most other countries in the region (Pisani and Grech 2015). As such, South Africa may be seen as the only hope for many parents with disabled children from neighbouring countries, where the services available for disabled children are extremely limited.

While only a small number of Zimbabwean parents have the resources to migrate to South Africa, those that do often find a harsh and disheartening reality in their new home. Despite going to great lengths to try to secure quality care, education, and treatment for their disabled children, immigrant parents need to overcome significant challenges to access the necessary institutions and service providers in South Africa (Pisani and Grech 2015). At the same time that families hope to access greater formal support through state provision, they leave behind their usual social networks that offer informal support.

In this chapter, we argue for a consideration of family support as it impacts upon the lives of families undergoing forced migration. We begin with a discussion of immigration policy in South Africa, before examining its impact on families with disabled children. We identify and define the group of immigrants—asylum seekers—to which this study pertains. We then present the findings of a qualitative research study carried out with Zimbabwean asylum-seeking parents of disabled children living in Cape Town and explore how their insecure grasp on citizenship interacts with disability, leading to an accumulation of impacts and predicaments. We hear from these families, regarding how they access support that enables them to respond to their precarious situation, through the analysis of 12 qualitative interviews with family caregivers.

South African Immigration Policy

Immigration policy in South Africa is described as restrictive, perhaps resulting from an official view that the majority of applicants are economic migrants, combined with the pressing need, after the demise of apartheid, to provide for historically disadvantaged Black South Africans (Crush and McDonald 2001; Handmaker and Parsley 2001). This perceived tension between economic development for foreign nationals and for South African citizens, who have long been denied access to the country’s resources, may be a contributor to the hostility with which many migrants are viewed, demonstrated most disastrously in outbreaks of xenophobic violence (Meldrum 2007). The documentation status of immigrants has important ramifications for the social conditions that they are faced with in South Africa. Although South Africa’s Constitution states that everyone in the country, including undocumented immigrants, has the right to basic healthcare and primary education, this is often not applied in practice (International Organisation for Migration [IOM] 2009). The options that immigrants have to document themselves in South Africa include (a) applying for a work (or business) permit; (b) applying for a study permit; or (c) applying for asylum in the hope of being granted refugee status (People Against Suffering, Oppression and Poverty [PASSOP] 2011).

Due to its restrictive immigration policy, South Africa receives a huge amount of applications for asylum, more than any other country in the world (United Nations High Commissioner for Refugees [UNHCR] 2010). In the face of a high number of applicants, the asylum process is completely overburdened and incapable of accommodating the many asylum seekers. The general inefficiency and corruption that has been widely documented at the Department of Home Affairs’ refugee reception offices across the country exacerbate these delays (PASSOP 2011). As a result, it is common for an asylum seeker to have to wait for five years for his or her status to be decided. When a decision is eventually reached, the outcome is negative for the vast majority of asylum seekers. Waiting for a decision for such a long time without any assurance of getting the much-needed document is a likely cause of the high stress levels found among asylum seekers and the refugee community (PASSOP 2011). Memories of harrowing experiences in their own countries may contribute to mental problems which may develop into a disability whilst in a foreign country (Momartin et al. 2004; Thapa et al. 2003; Tol et al. 2007). A total of 44,423 Zimbabweans claimed asylum in South Africa between 2005 and 2007. However, in 2004, 2005, and 2006, only 241 Zimbabweans were recognised as refugees (Africacheck 2013; Jesuit Refugee Service Report 2008).

This study focuses on asylum seekers as opposed to refugees. According to the United Nations Convention of 1951 (UN 1951, Article 1), “a refugee is any person, owing to well-founded fear of being persecuted for reasons of race, religion, and nationality, membership of a particular group or political opinion, is outside the country of his nationality and is unable to or owing to such fear, is unwilling to avail himself of protection of that country”. On the other hand, an asylum seeker is a person seeking international protection, whose claim has not yet been decided by UNHCR or the relevant authorities of the country in which he/she has requested refugee status (UNHCR 2002).

Challenges Facing Asylum Seekers

Having fled their home countries due to humanitarian suffering or political persecution, once in South Africa, many migrants remain in marginalised positions (Consortium for Refugees and Migrants in South Africa [CoRMSA] 2009). Most newcomers lack the local support structures such as friends and families to act as safety nets. They face adversity in finding employment, because many lack appropriate education or training and have little or no resources to obtain these or to cover the costs involved in job searching (CoRMSA 2009). For example, a recent survey found that 48% of refugees and asylum seekers reported being rejected as job applicants because they were not South African, even when they had the right to work (CoRMSA 2009). This is not to mention the xenophobic tension and discrimination they face because they are foreigners (Southern African Migration Project [SAMP] 2008). Many are forced to accept lower wages or higher rent or are subject to abusive verbal and physical harassment and threats (CoRMSA 2009).

Migrants find it very difficult to access healthcare (Crush and Tawodzera 2011), education, and social assistance (CoRMSA 2009). This is a reality despite South African law clearly providing that everyone in South Africa, regardless of nationality or immigration status, enjoys access to free emergency healthcare (including antiretroviral treatment for people infected with HIV), access to other forms of fee-based healthcare, and to basic education. The dichotomy between theory and practice here may be due to a reluctance by service providers to extend assistance to non-nationals (especially the undocumented), on the one hand, and a lack of rights awareness of immigrants, on the other hand.

Even if migrants have valid work permits or asylum-seeker documents, they lack access to grants and social support structures to assist them with the high costs involved in the proper care, education, and treatment for their disabled children (SAMP 2008). They do not qualify for the so-called Care Dependency Grant. This grant of R1200 (about USD 110) per month is administered by the South African Social Security Agency (SASSA) to parents with disabled children. Only in September 2011 did the Department of Social Development, after a legal challenge brought by the Legal Resource Centre and the Scalabrini Centre, change the regulations for the Care Dependency Grant to allow migrants with refugee status to qualify. This policy change only benefits a small portion of migrants (those with refugee status), while excluding the much larger number of asylum seekers and undocumented migrants.

Asylum seekers and refugees also encounter linguistic barriers; host countries may find it difficult to find appropriate interpreters for speakers of non-local languages (SAMP 2008). This language barrier means that even if there is available support for this population, communication can hinder the provision of this support.

Some of these asylum-seeking families may have arrived alone in a foreign country with a child with a disability, and in many cases, they settle away from available support. Some families may decide to settle in informal-settlement communities, where they pay less rent. This decision makes these families more vulnerable to isolation (Lawyers for Human Rights 2006). Asylum-seeking families are likely to be faced with the challenge of income restriction and are likely to find themselves working as cheap labour (SAMP 2008). As a result, immigrant families with disabled children who come to South Africa in search of peace, security, greater economic opportunity, or the proper care for their children often find conditions not much better than those they left in their home countries. Some of these families might have faced challenges associated with war and ethnic conflicts (Trani et al. 2011). On the basis of in-depth interviews with families with disabled children living in the Western Cape Province, this chapter explores the needs of this marginalised group of people and aims to shed light on the support that families need to raise their disabled child in a way that is consistent with their rights to full participation.

Families of Disabled Children

Beresford, Rabiee, and Sloper (2007) argue that parenting a disabled child goes beyond “ordinary” parenting. This is why one could argue that the situation of a family living with a disabled child is analogous to that of a migrant in a foreign land (Cowie et al. 1998; Crock et al. 2011), contributing to a double alienation for immigrants with a disabled child.

Families living with disabled children are economically marginalised by various factors, such as problems with parents’ ability to access work (e.g., relating to the unavailability of appropriate and affordable childcare), difficulties when employers fail to recognise the parental responsibilities of parents living with disabled children, and impairment and disability-related costs (PASSOP 2011; Working Families 2017).

Though the above is relevant to the burden faced by families living with disabled children, it is essential to note the positive experiences associated with having a disabled child. In reframing the experience of disability, some families report a sense of personal growth through having their disabled child (Stainton and Besser 1998). Apart from personal growth, Scorgie and Sobsey (2000) wrote that families living with a disabled child reported that their child’s disability has given them an increased sense of purpose. Improvement in relationships and social networks are some of the positive aspects that some families experience through their disabled child (Scorgie and Sobsey 2000). For Ylvén, Björck-Åkesson, and Granlund (2006), a positive outlook on childhood disability correlates with decreased feelings of stress and burden.

Some families may receive a child with a disability as a blessing from God. When trying to understand the circumstances or meaning behind having a disabled child, researchers report that many parents take comfort in their spirituality, which helps them to view their child as a blessing or a test of their faith, as opposed to a burden (Blacher et al. 2005).

Family in an African Context

The most salient features of the African family institution include strong patriarchal traditions, widespread polygamy, institutionalised age cohorts, major cultural weight given to fertility and lineage, and pervasive politico-economic, social, and cultural patterning through kinship (Therborn 2006).

The centrality of the family in the current study rests on its capacity to meet the needs of a disabled child, as the familial space is the primary setting where children’s needs can be met (Pringle 1975). It is the responsibility of family members to offer social support to a relative that is in need. In this case, family members and friends of a Zimbabwean asylum-seeking family living with a disabled child are expected to provide social support in the interests of the well-being of the child.

The Nature and Meaning of Social Support for Zimbabwean Immigrant Families with a Disabled Child

Ten interviews were conducted with asylum-seeking Zimbabwean mothers of disabled children and two interviews with key informants from PASSOP, a local non-governmental organisation that deals with Cape Town-based refugees and asylum seekers from all over the world.

Five key sources of support (or lack of it) were identified by the families, each of which will be briefly discussed in turn.

Informal Support from Family Members and Friends

Participants reported that friends and family of the disabled family member provided emotional support, which included, among other things, the sharing of problems related to the care of a disabled child. This was particularly important in the light of their dislocation from their extended family. Certain participants, however, expressed their displeasure in the way some of their family members and friends perceived them and their disabled children. This negative perception, they reported, is rooted in traditional Zimbabwean beliefs about disability, where a mother is blamed for the disability of her child. Some participants commented that they had hoped to leave these negative perceptions behind them when they left Zimbabwe.

Support from Husbands

Some participants reported that the burden of care was lessened by the involvement of their husbands in childcare. Most, however, said that their husbands were not interested in caring for their disabled child. Some marriages had come to an end as a result of difficulties associated with caring for a disabled child.

Religious Support

All participants in the study identified as Christian, and most of the mothers believed that religion was the only solution to their care-based challenges. They expressed that Christianity provided the only framework through which they could interpret having a disabled child as positive and meaningful, with the children seen, for example, as gifts from God. They reported that there must be a divine reason for them having these children.

By contrast, none of the mothers mentioned African traditional healers as a source of support. Participants in this study viewed traditional healers as part of the “evil” affecting their communities, including the disability of their children. They suspected that traditional healers had used herbs to cause their child’s disability during pregnancy. For this reason all of the participants in the study rejected the idea of consulting traditional healers.

Parent Support Groups

Participants regarded support groups as one of the main sources of support in caring for a child with a disability. Interaction with other parents of disabled children was acknowledged as pivotal. However, some participants were not so lucky: they were refused entry into these social support groups because of their nationality. Xenophobia, as stated earlier, is not new to South African communities and is not unique to Zimbabwean immigrants.

Formal Support

In this study, professionals such as teachers and health workers were mentioned by participants as important forms of social support. It was mainly the direction and guidance that these families received on meeting such a professional, sometimes after receiving a diagnosis, that was important. Participants reported that they face regular challenges, such as when their child is ill, and that these challenges require specialists. It is mainly during such times of illness that parents found themselves at clinics and hospitals, seeking guidance on how to deal with the child’s condition.

Conversely, some participants disagreed with this view of professionals as supportive. The unhelpful language and behaviour of some specialists was identified as a problem by parents. Participants complained that their specialists used local languages (IsiXhosa and Afrikaans) to communicate with them, even though the parents cannot speak these languages.

Adding to these difficulties were the unexplained medical terms employed by some health officials. Participants reported that many times they did not understand the terminology used by the doctors, which left them completely ignorant regarding the progress of their children.

Challenges in Accessing Support

Mothers mentioned a number of challenges they experienced in accessing support.

No Interpreters

There were no interpreters at clinics and hospitals, and health officials’ refusal to use English as a common language exacerbated the problem. Most health officials prefer to speak in their local languages, which are familiar to most families they come into contact with. The families of children living with disabilities saw the language problem at health centres as, in the final analysis, harmful to the child, since the child is often not given the necessary attention or the proper medication.

Culture as a Barrier

Within some Zimbabwean traditions, the mother of a disabled child is assumed to have “caused” the disability, commonly through being unfaithful to her husband during pregnancy. Some of the mothers we spoke to were told by family members that it was incumbent upon them to return to Zimbabwe to take part in cultural rituals to appease the ancestors for their wrongdoings. None of the mothers took this advice, and they resented being positioned in this way.

Ubiquitous Stigma

Some participants reported feeling rejection, isolation, and alienation from medical personnel on the basis of their disabilities and their status as foreign nationals. Others were also discriminated against by the church and the community. Families reported that the stigmatisation of their children was common, and they wondered why people with disabilities, and especially young children, are still stigmatised.

Denied Places at Schools

Regarding education for their children, participants reported that, at some schools, their children were not given places to study because of their disabilities. This particular challenge was reported by many participants, who saw their difficulty as doubled because of their status as foreign nationals. Participants reported that the condition of disability was one of the first factors that certain schools considered before they enrol a child. The more severe the disability, the slimmer the child’s chance of getting a place at the school.

Attitudinal Barriers

Many parents reported that the most common barriers to support were the attitudes they encountered in their day-to-day living. They described how the negative attitude of ordinary locals, professionals, and the church was something they endured in their search for support for their children.

Violence/Anti-immigrant Sentiment

South Africa has been the scene of wide-scale xenophobic violence, with a much-publicised series of outbreaks in 2008 (Crush 2008; Neocosmos 2008). Participants reported that ongoing anti-immigrant sentiment and violence affect their lives deeply. Facing all of the challenges described here, along with living with the constant threat of unpredictable hostility from the community, amounts to lives of immense stress.

Implications for the Politics of Citizenship

What is clear from the stories of this small group of mothers is that they have to struggle with far more than questions of citizenship and place for themselves—that is, difficulties which are common to asylum seekers and migrants in many parts of the world. Beyond these things, they struggle as advocates for their children, for their children to be accorded full recognition as persons in both institutional and community settings. There are two arcs of disavowal in operation here—one is that of the global politics of migration and the other is that of the politics of personhood in relation to disability. In addition to this, the mothers themselves are blamed for producing defective children and, therefore, seen as not deserving of the same rights others would enjoy. This is a small case of displaced people who have fled their homes and now find themselves homeless in many senses of the word, if not literally. The marginality of migration and the marginality of disability intersect powerfully. There are many signs of resilience and strength here, but an important lesson for our thinking about disability and citizenship is that just as the category of disability disrupts our common sense understanding of personhood, so the category of migration (or asylum seeking) disrupts our understanding of citizenship. Our participants are living a complex politics of multiple liminalities. This is not an uncommon experience, as so many people migrate. An understanding of citizenship which does not allow for the instability of the lives of these women and their children cannot be anything other than incomplete.