“We too are disabled”: disability grants and poverty politics in rural South Africa
“We too are disabled”: disability grants and poverty politics in rural South Africa
Abstract and Keywords
This chapter examines the relationship between disability and poverty in the new democratic South Africa. During this country's transitional period, a new conceptual understanding of disability has mainstreamed disability in new policies and laws. The anthropological material presented here shows how these processes of programme implementation have shaped people's social experiences in rural areas of the Eastern Cape, around Mthatha. The history of apartheid, with its establishment of structural inequalities, has created a specific type of poverty forming people's social experiences as well as their understanding of disability. The chapter also discusses the local conceptualising of disability and Ubuntu in the surrounding areas of Mthatha. In this setting, disability grants are a tool of survival for both the person with a disability and the household. In addition, the grants contribute to establishing a commonly shared disability category that people make use of.
This chapter investigates the relationship between disability and poverty in the new democratic South Africa. During this country's transitional period, a new conceptual understanding of disability has mainstreamed disability in new policies and laws. The anthropological material presented here shows how these processes of programme implementation have shaped people's social experiences in rural areas of the Eastern Cape, around Mthatha. The history of apartheid, with its establishment of structural inequalities, has created a specific type of poverty forming people's social experiences as well as their understanding of disability.
The process of implementing disability grants (included in the Comprehensive Social Security System) has shown disagreements between poor people's demands and claims for being disabled and the bureaucratic definitions of who is considered to be disabled. The situation of poverty creates disagreement about what is analytically distinguished as broad (disability as discrimination) or narrow (disability as impairment) definitions of disability. Both these approaches are incorporated into the social change processes, within a human rights framework, that are transforming South African society, yet both approaches entail history differently, which affects how social experiences in poor settings are being interpreted, understood and debated, and hence how people's suffering is being acknowledged and acted on through programmes and new interventions. In this chapter we start with a discussion of the historical production of poverty, then we discuss the local conceptualising of disability and Ubuntu in the surrounding areas of Mthatha. In this setting, disability grants are a tool of survival for both the person with a disability and the household. In addition, the grants contribute to establishing a commonly shared disability category that people make use of and can act on in the new democratic South Africa.
Broad and narrow conceptualisations of disability are embedded in past historical structures of how disability is explained and understood. The broad definition understands disability as discrimination resulting from past injustice and segregation. Embedded within this is a different way of constructing personhood and disability, with a specific emphasis on how society creates barriers and hence disability. New constitutions, laws and policies have been developed from this perspective of understanding disability as discrimination (Office of the Deputy President, T.M. Mbeki, 1997).
The narrow definition classifies disability through bodily signs (impairment). This understanding is embedded in the bureaucratic implementation of the Comprehensive Social Security System that distributes disability grants in South Africa. The narrow definition forms part of a political and professional process of medicalisation that, according to Kleinman et al (1996), powerfully shapes the responses and type of social suffering. The Comprehensive Social Security System depends on classifications that are integrated in the political process of knowing how to develop a welfare state for all. This current modernisation process within South Africa requires the state to develop a knowledge system that regulates households, people, their bodies and their network. It also requires population studies and statistics from all over South Africa in order to plan comprehensive health and social services. This process additionally regulates how to define disability and how to formulate questions such as ‘who is disabled?’ and ‘what constitutes disability?’. The question ‘who is disabled?’ starts with the individual impairment level of classification and the definition leans on a biomedical system of expert knowledge.
The historical understanding of apartheid and the process of producing poverty creates disagreement between broad and narrow definitions of disability. In rural areas of the Eastern Cape, people demand that the condition of ‘having fits’ be acknowledged as impairment and therefore covered within the disability grants system. In order to capture the social experiences of those living in poverty and to understand the disagreement that occurs between the broad and the narrow definitions of disability, we find Kleinman et al's (1996) theory on social suffering useful for poverty analysis. Social suffering draws attention to suffering as a social problem, not as an individual condition, but rather as a result of political, economic and institutional structures and forms of power which influence people's responses to social problems as social experiences. According to Kleinman, suffering is a social experience grounded in interpersonal relationships, not only as an individual essence but also in its relation to structure, history and culture (Kleinman and Fitz-Henry, 2007, pp 63–4). Farmer (2004) makes power more explicit in his analysis of social suffering as a direct consequence of the production of poverty. Farmer uses Galtung's concept of structural violence (Farmer, 2004, p 307) to underline social structures as historical processes that create realities of poverty that continuously limit people's possibilities today. Farmer's analysis relates to how (p.95) the production of poverty occurs and what political acts and ethical demands are needed to change the ‘vicious circle’ of poverty and disability. Kleinman et al's use of social suffering draws attention to the cultural responses, including bureaucratic responses, that can intensify social suffering as structural violence. Important questions to ask are how social suffering is produced in societies and how acknowledgements of pain and poverty as cultural processes are given or withheld (Kleinman et al, 1996). In addition to describing the context of social suffering this ethnographic material shows how experiences of disability and local manifestations of conceptualising disability enable people to create meaning in this particular local context. Thus the analysis follows Bourgois and Scheper-Hughes (2004) and Green's (2004) comment to Farmer. In addition Ingstad and Reynolds Whyte's (1995, 2007), and Kohrman's (2005, 2007) ethnographic investigations shows the importance of studying how disability is being manifested and shaped within these particular local contexts.
Poverty and the history of apartheid
The history of apartheid has created a specific form of poverty. Dependence has become a consequence of the segregation policy under apartheid. One of the intentions of apartheid was to establish ‘separate development’, with independent ethnic ‘homelands’/Bantustans which were part of the ‘native reserves’ (established under the Land Act 1913) for native black South Africans. During the apartheid era, passports (Dom passes) and ID documents became central for moving between places. Those who received ID documents from government had been enrolled in labour regulation programmes. The apartheid state distributed labour between farms and towns, and only those who became migrant labourers could travel. Bantustan territories served as migrant systems, functioning as ‘labour reserves’ for the South African economy. ‘Labour reserves’ separated the household members living in ‘homelands’ from the migrant workers who lived on the white South Africans' land located in the cities far from ‘homelands’ or ‘native reserves’ (Comaroff and Comaroff, 1987; Ferguson, 2006). Black South Africans could only move in towns with a Dom passes which contained their life history and employment story and hence the right to be in the town (Legassick, 1977, pp 181–3). IDs and passports were given to people within a specific age group. The inability to move (due to lack of ID documents) restricted people's access to healthcare and social services that were located in urban places (Bundy, 1977). Today, ID documents are crucial in accessing disability grants, and much effort has been put into registering people who were never given the documents or birth certificates. Past practice has left a huge black population behind due to unfamiliarity with the bureaucratic system and lack of knowledge needed to access the current Comprehensive Social Security System.
The Comprehensive Social Security System is part of a programme aimed at reducing poverty, the war against poverty,1 for all South African citizens. In the past, white South African planners did not take much responsibility for living conditions in the Bantustans. The Comprehensive Social Security System, including disability grants, was part of the white-controlled state, serving ‘poor whites’. The welfare costs of housing, pensions and social facilities were up to each ‘homeland’ to facilitate from the domain of the urban workforce and the industrialised centres. The welfare of poor whites was provided for under public works, vocational guidance, health services and housing and social clubs.2 Pensions for poor mothers and older people and disability grants for the sick were given and provided for whites only (Giliomee, 2003). This system has now been transformed into the new Comprehensive Social Security System, incorporating all South African citizens. This means-tested system3 is provided to a number of specific population groups such as children, people with disabilities, foster carers, war veterans and older people, according to personal income levels. Biomedical diagnostic tools with medical tests and scientific proof are the basis for accessing grants. Classifications and new definitions are under development and the practice and interpretation of these new definitions are understood differently in various settings within South Africa. The programme's intention is to strengthen the household level and the individual person with monthly distributions. The distribution system has less focus on guidance and advice on how to use the grants for the future. This chapter shows how disability grants are being used as a practice that has constructed the broad concept of disability.
Two phases of development after apartheid
We have chosen to divide the development process of conceptualising disability in the new democratic process into two phases. The first phase (1994–2001) consists of a reconciliation period that was a major issue in the building of the ‘rainbow nation’. During this period, discrimination and subjective experience were part of the public discourse on dealing with memories of the past. The strategy for Disabled People South Africa (DPSA) (DPSA, 2001), the Disabled Children Action Group (DICAG) and other actors in the disability movement has been to define disability through subjective discrimination experiences. The disability movement was visible and active in informing and recommending people in disadvantaged areas as to how to utilise disability grants. In this phase, the intention was more or less to distribute services to those who were in need, rather than to ask the question of who was in need. People had the right to receive grants to make up for past wrongdoings. Disability organisations run by disabled people were given the task of recommending people for accessing grants and for informing them on how to access disability grants.
(p.97) The second phase (2001–07) consists of the implementation of new policies and laws. The welfare system was under pressure as high unemployment rates increased the number of applications for disability grants. More people wanted to receive disability grants than those who actually received the grants (De Koker et al, 2006; Nattrass and Seekings, 2005; Nattrass, 2006; Mitra, 2008; Whitworth and Noble, 2008). In order to plan and control health and social services, the government saw the need for better statistics on the number of people with disabilities and the number living in poverty. The need for control was also apparent in how definitions of disability changed in subsequent national censuses – in 1996, 12% of the national population was considered disabled and in 2001 it was 5% (Child Health Policy Institute, 2001; Statistics South Africa Census, 2001). After 2001, the question of abuse and corruption was publicly debated and closely linked to the grant distribution process. The government initiated investigations that ended in reducing the number of recipients and withdrawal of grants from people, and introduced a more narrow definition of disability.4 However, the distribution process is now, more or less, in the hands of professionals, where disabled people's organisations (DPOs) claim difficulties in participating in the political process of defining disability within the Comprehensive Social Security System. In this political process there is a tendency to fear that too many people will be classified as disabled and as ill. Nattrass (2006, p 2) argues that ‘people become ill and remain ill because disability grants become one source of income’. This tendency is enhanced by the lack of unemployment grants in the welfare system that forces people to become ill (Nattrass, 2006, p 2). This has instigated debates about how to define disability, more narrowly, while in practice moving the process away from what really matters, addressing the phenomena of social suffering and the relationships between disability and poverty. Instead, the public discussion is caught up in debating what disability grants represent rather than what disability grants do and how people make use of these grants locally.
Part of the public debate was focused on the fear of creating state dependency, where too many receive government grants under the category of disease. In the South Africa Human Sciences Research Council study on state dependency it was highlighted that the notion that too many people receive disability grants goes back to the ‘undeserving poor’ entrenched in pre-welfare state Great Britain. However, more recent roots are to be found in neoliberal thought which emerged in the 1980s, particularly in the US, spreading concerns to any state offering cash transfers as part of its anti-poverty politics with state transfers becoming a strain on national expenditure (Noble and Ntshongwana, 2007, p 6). Interpreting people's demands for disability grants as abuse of the system and further ‘blaming the poor’ for taking advantage of the system are well-established concerns in South Africa. From this perspective the individual is seen as the recipient of handouts. It is interesting that studies of the contemporary Comprehensive Social Security System on grant beneficiaries made by the South Africa Human Sciences Research Council conclude that no evidence was found for creating a dependency culture (Noble and Ntshongwana, 2007, p 6). From this we understand that the (p.98) government wants strong arguments to deal with the rhetoric of abuse, corruption and the fear of medicalisation.
The two phases of development described above are connected to the broad definition (1994–2001) and the more narrow definition (2001–07) of disability. Here we have distinguished the phases analytically. In public discourse as well as in experiences among people, these thematic phases are often interwoven and cannot easily be distinguished.
During these phases, a new framework for disability has been developed through the World Health Organization's (WHO) International Classification of Functioning, Disability and Health (ICF) (WHO, 2001), moving the medical model towards a social model, with greater emphasis on how the environment creates barriers and limitations. The ICF model deals with bodily impairment as a bodily entity that can be changed or removed. Disability is therefore something a person can move in and out of and the conceptual framework is flexible in defining people with disabilities in relation to the environment. During the same period, people within the South Africa disability movement have played a significant role in developing a global framework of human rights and the process of developing the United Nations (UN) Convention on the Rights of Persons with Disabilities (2007). The Convention requires a specific disability focus with a strong focus on discrimination and the responsibility to create a society that incorporates and makes reasonable accommodation for people with disabilities. In this political context South Africa has been used as a good example as to how the government has come far in implementing the Convention in new policies, laws and the constitution. The Convention depicts the proportion of people with disabilities in a population as around 10%, thus creating a space for a focus on barriers and limitations in society rather than on the question of ‘how many are disabled?’. Even though South African disability activists have achieved much, in only a short time, in mainstreaming disability to all levels of society, a call for a clearer definition (narrow definition) and the questions of who are disabled and what constitutes disability are still key aspects in the public debate. Demographic studies and national censuses contribute knowledge to form a basis for how the government sets priorities. Behind these prioritisations emerges a way of thinking that tends to draw the focus towards numbers in research and knowledge production rather than on questioning how suffering is produced in societies and in identifying factors that perpetuate the relationship between disability and poverty.
Disability as discrimination
There is a close relationship between the broad explanation of disability and the theory of social suffering. Disability as discrimination relates to the past and current structures of society, where discrimination is closely related to how people experience the environment. Subjective experiences become crucial in how discriminating practices are defined. The relationship between the individual (p.99) person and the environment becomes significant in order to understand how people conceptualise disability. Barriers in society are seen as discrimination due to restrictions in participation. Discrimination in South Africa also relates to the history of past inequalities and apartheid's segregated practices that also explain the cause of disability as barriers created by society.
As a development strategy to address inequalities of the past, the disability movement in South Africa has put cultural representation on the political agenda – representation is understood as people with disabilities being represented in positions of authority/power. Having such a position means that the embodied disability experience becomes significant. From this perspective the movement seeks to move away from seeing people with disabilities as victimised after apartheid, but rather as agents for change. The slogan ‘Nothing about us without us’5 underlines this emphasis. A significant distinction exists between people who are disabled and people who do not see themselves as disabled. This distinction is visible in the division between DPOs that only have members who are disabled (also called organisations of disabled people) and organisations run by professionals for disabled people (organisations for disabled people). The disability movement (DPOs) in South Africa has made self-experiences and self-representations a political agenda, emerging with the transformational process of creating access for all. These DPOs have created entrepreneurships in order to accumulate specific knowledge on how to mainstream disability in the workforce, organisations, institutions and government on all levels. A nationwide network of people who are disabled has put forward a recommendation to assist each other, and also to make sure that people with disabilities are represented by taking ownership of their own agenda. This network of people has been driven by people who are disabled and who used to be part of the resistance movement and the African National Congress (ANC) struggle against apartheid. In the contemporary transformational process of empowerment, a specific category of disability is acknowledged in laws, policy and the new constitutions. The national network has functioned as an empowerment tool to identify and to include more people who are disabled in activities and events.
The process of empowerment and change incorporates the past injustice of discrimination, and makes the disabled person visible and enabled to act in public. The focus on I can and on creating enabling environments has enabled individual performance through self-representations. DPSA have actively negotiated and taken part in developing policies and laws, and facilitated social change in government structures. DICAG has promoted the inclusion of children. This is particularly evident within education, social security and health areas. Disability has been mainstreamed in specific areas such as education, health and social services, buildings, transport and employment (Office of the Deputy President, T.M. Mbeki, 1997). Within the labour sector, disability is integrated as part of the affirmative action and equity programme of the Broad-based Black Economic Empowerment Act (South African Government, 2003) and the Employment Equity Act (South African Government, 1998). The law confirms that 2% of employees must be (p.100) people with disabilities. Specific units within the government that are established to implement the disability programme are further required to employ people who are disabled. Through these processes of employment positions, social change has been initiated and created places where disabled people are represented. The crucial aspects in these programmes are participation and equal opportunities. The human rights approach of social change has actively worked with empowerment, emancipation, self-representation and participation within the South African state. Disability has become a matter of citizenship, required through cultural representations in the new transformation process.
Conceptualising disability in the rural surroundings of Mthatha, Eastern Cape
The anthropological field study started out with a local key person who collaborated closely with the chief and headman. The local rural village structures were a significant starting point for mobilising and gathering people.6 We were overwhelmed by the number of people who turned up to our planned meeting and we could easily identify social suffering as a normality among them which had been shaped as a collective form of social experience. The anthropological material was collected through an open question methodology that allowed people to speak for themselves. A total of 10 village meetings were conducted, in addition to 57 individual interviews (some in people's homes) and 15 focus group discussions. The selection methods were drawn from those who had turned up at village meetings and who volunteered to participate in interviews. Among the individual interviewees were both men and women between the ages of 18–60. We purposely did not ask for a specific diagnosis nor had any diagnostic measurements but allowed people to express their understanding of disability.7 The material presented in this chapter forms one part of a broader doctorial research project in which this chapter is integrated into a broader content. The anthropological material was gathered during nine months of fieldwork where participatory observations enabled a situation in which the researcher moved with and between people in different situations – following the disability grants. A multisited methodology is essential for presenting different aspects of how disability grants are variously interpreted among people and made use of locally in different situations and places.
With this choice of method we asked about people's experiences of disability and created room to allow people's demands and social sufferings to be articulated. The most interesting part was that we met the same statements wherever we went: shared perceptions and agreements about what disability was all about. The general answer was: “You are disabled when you can't do what you want”,“We can't find work and we can't work – we are disabled.” They were referring to restrictions of mobility as important for understanding disability, inabilities to perform and barriers in the environment. This was expressed and articulated in many ways: “People are dying here because they can't travel to the doctor, we want (p.101) to seek medical help and there are no doctors here. People are ill and people are dying”; “Transport costs money and medication costs money, and the distance is too far”; “People experience pain, fits, illness, and a body which cannot do what they want”; “We become sick from the water.” All the time people asked, “Why are we not considered disabled?” These articulated demands were the result of huge expectations of the new democratic South Africa. In this situation, people try to talk themselves into disability. This correlates with MacGregor's 2006 findings on how people in Kayelitsha expect the state to provide the means for health, receiving grants from food and the most basic means of sustenance (MacGregor, 2006, p 53). We were faced with a situation where people seldom got the chance to articulate their experience in public hearings. Few doctors, nurses or social workers visited these localities and few development programmes were initiated, except for the event of the monthly distribution of grants in the villages. Poverty was not sufficiently addressed. We positioned ourselves as interpreters of people's experiences and saw it as important to put forward local and inside perspectives on how shared experiences and local understandings of disability and social suffering as a concept were being shaped, learned and constructed as cultural representations. The specific relationship between poverty and disability puts pressure on a medicalisation process, where people demand more people to be included and to be acknowledged as disabled, a process which is mobilised through a culturally inclusive word, Ubuntu, in addition to a political process of transforming South Africa into a new democratic society.
Ubuntu and self-representations
Kleinman et al (1996) define social suffering as an interpersonal experience embedded in local words of social experience and morality. Local moral words are significant in how people create networks and are able to share experiences and produce cultural representations of suffering. In this process the concept of Ubuntu shapes people's interaction and how they express their experiences in their everyday lives. There is a close link between how organisations of disabled people have worked with conceptualising disability and how Ubuntu creates a sociality of sharing perceptions, ideas and a practice of being together in everyday life. The practice of Ubuntu is visible in how people express their shared demands, differences, conflicts, disagreements and agreements, the knowledge of disability, the huge expectations that exist among rural people in poverty and the way people manage to organise these experiences as collective demands. Ubuntu is not an easy concept to translate. It is embedded in values of how people relate to each other. Ubuntu shapes relationships oriented in a sensibility vis-à-vis the other. Ubuntu's capabilities are about reaching out to people, showing greatness in order to help and assist others who are in need, sharing food, money or knowledge. It is about building a self in conjunction with others. In South Africa the concept of Ubuntu is commonly used in public as part of the reconciliation creation of unity.
(p.102) The word Ubuntu is Zulu, umuntu ngumuntu ngabantu, and means ‘humanness – a person is a person through other persons’.8 In a web video,9 Nelson Mandela explains the spirit of Ubuntu: ‘Ubuntu does not mean that people should not enrich themselves. The question therefore is: Are you going to do so in order to enable the community around you to improve?’. Desmond Tutu describes Ubuntu as:
In South Africa there is a common understanding of the word as part of an existing humanity. In Xhosa the word Ubuntu is the same, you just remove u (umntu ngumntu ngabantu). Humanity is closely linked to how people understand being incorporated into the new South African state, the interconnection and the way people help and assist each other. We discussed Ubuntu with some of the members in the local DPO and one of the leaders always repeated that there was little Ubuntu left. This came up instantly when he talked about how people are suffering and that people are more concerned about themselves ‘these days’. As outsiders we saw how incredibly important the value of Ubuntu is in order to interconnect people and communities, between different hierarchies and the way of sharing information and gathering people in order to help and assist and what people do and how people act; and, most importantly, how significant such a value system is for making voluntary organisations work.
A person with Ubuntu is welcoming, hospitable, warm and generous, willing to share. Such people are open and available to others, willing to be vulnerable, affirming of others, do not feel threatened that others are able and good, for they have a proper self-assurance that comes from knowing that they belong in a greater whole. They know that they are diminished when others are humiliated, diminished when others are oppressed, diminished when others are treated as if they were less than who they are. The quality of Ubuntu gives people resilience, enabling them to survive and emerge still human despite all efforts to dehumanize them.10
There is a close relationship between sharing goods and wealth and how disability grants are made use of. In a context of poverty, disability grants easily become integrated into a practice that has to do with sharing wealth and building relationships vis-à-vis others. Expectations to share these grants are embedded directly in values of Ubuntu as reciprocity. Around Mthatha ties of interdependence are indirectly maintained through disability grants as the amount of monthly income enables some households to share and create ties of interdependence through the value of sharing food and information. Disability grants also make it possible to sustain activities related to disability, creating meeting places and a common ground for sharing experiences. Local organisations of disabled people have developed a common ground for sharing subjective disability experiences and established networks and meeting places where words can be attributed to collective experiences. This network of people has also helped people with disabilities to access the disability grant system in rural areas. The story below is (p.103) based on an interview with a woman who used her own experience as a basis for setting up an organisation of parents. Exchanging dialogue created a network where mothers could share their experiences. She narrates.
Being able to establish such groups and being open to sharing one's experience is deeply related to values and practices of Ubuntu – acknowledging differences (p.104) and a willingness to share. Given the amount of people in the area who received disability grants, and the grass-roots movement that developed a network of people sharing disability experiences, the process can be analysed as sharing collective experiences, creating collective political demands.
The second and third stories below illustrate how disability is conceptualised within the disability grants system, what counts and what does not count as disability. These stories illustrate the disagreement between how people experience disability and the contemporary economic, bureaucratic prioritisation the government represents through a more narrow definition (medicalisation) of who qualifies for disability grants. The bureaucratic response intensifies people's suffering. In the second story we meet the social security officer who takes part in the implementation process of how people are selected for doctor's consultations as part of the process of applying for disability grants. The community is asked to pre-select 10 people. The social security officer, Mr Ngobo, encounters people who have already conceptualised a local understanding of disability related to illness and are able to articulate to him their social suffering as demands. The story shows the local disagreement between the broad and narrow understanding of disability and the kind of morality that is embedded in practices addressing poor people who experience social suffering and poverty.
(p.105) From this we see how disability was articulated by one gatekeeper, Mr Ngobo. Going through all the clinic cards in the queue we could see that many in the line were people with epilepsy. They had received treatment from the clinics for some years but still had fits periodically. Even though, they explained, the medication had an effect on reducing the seizures, they had not disappeared and for that reason they still regarded themselves as disabled in everyday situations and wanted to apply for a disability grant. In the process few of these people were selected. Thus, the question that remains is, why are seizures not acknowledged as ‘impairment’ symptoms that can lead to disability? Those who were selected included a young person with skin problems, one deaf and one blind person and others with physical disabilities. With the bases of my nursing experience, I assessed many of those left behind as critically ill. We followed the same selection process in five different villages. Twice a year Mr Ngobo visited the same village and conducted the selection process. Using this selection process was at the time the most common way of assessing disability grants, unless one did not happen to be admitted to the hospital for a longer period. In some cases hospitals issue disability grants, but the new reform refers such cases to the municipality.
Above we saw that Mr Ngobo quickly acknowledged physical signs as impairment in contrast to signs of fatigue, malnourishment, tiredness and fits/seizures. This illustrates a distinction between visible and invisible signs in the selection process that is part of a complicated public bureaucratic system dependent on medical evidence and documentation. To apply for a disability grant, the person needs an ID card, clinic cards and professional medical documentation concerning their disability, such as x-ray pictures, blood tests or other tools for diagnostic justification. However, diagnostic technology is distributed differently (p.106) according to where you live due to the establishment of institutions that have such capacity. Urban areas are far better equipped when it comes to such technology and availability of medical doctors. In the past, most black people were denied access to places where such technology existed. They now demand to have medical doctors in places where people are ill. The term ‘epilepsy’ requires such expertise to acknowledge such a condition as being disabled.
The third story: ‘Having fits’ challenges of defining disability
In the Comprehensive Social Security System ‘having fits’ is hard to diagnose as epilepsy, hence people do not receive disability grants for this impairment alone. Looking through 100 rejected cases (up to the year 2006) in the O.R. Tambo DPO, 70 of these cases were rejected with the argument that epilepsy could easily be treated with medication, and hence, since in South Africa medication should be given out free at each clinic, it was not seen that ‘having fits’ could cause any situation of disablement. This correlates with Segar's (1994) argument of the ambiguity of disability when it comes to epilepsy, and that people from impoverished backgrounds spend a lot of time and energy trying to substantiate claims to these grants, and are rejected due to the morality of drug compliance (Segar, 1994, pp 282–86). The argument of rejecting ‘having fits’ as impairment for disablement is interesting when we compare this argument with recent epidemiological research findings. These studies show the connection between malnutrion, high unemployment and undertreatment of taenia solium cysticerosis, a biomedical infection causing tiredness, fatigue, malnutrition, fits and epilepsy. According to Carabin et al (2006), the former Ciskei and Transkei in Eastern Cape are endemic areas for taenia solium cysticerosis. This condition causes serious public health problems and remains uncontrolled due to lack of information and awareness, absence of suitable diagnostic tools and appropriately adapted interventions (Carabin et al, 2006, p 906). Comparing the high prevalence with how people in the study express their subjective experience, we see that the link between poverty and ‘having fits’ also demands attention within expert groups and professionals who are working within the health and social service system. An epidemiological community-based survey in the area showed that among professionals it was well known that humans acquired tapeworm after eating raw or undercooked pork contaminated through faeces or food but little is done in order to act on such information (Del Rio-Romer et al, 2005; Carabin et al, 2006). From these research findings relevant questions emerge: in which way can the Comprehensive Social Security System relate to people's emerging demands on the ground? Further we illustrate how poverty is continuously shaping a disabling environment, and constituting disability differently in different places.
In rural areas, ‘having fits’ is quite a common phenomenon among people, and different local explanations exist. People distinguish between those who have regular fits and need constant care from those who have fits once or twice every six months. Rituals where pigs are eaten are significant events such as funerals (p.107) and marriages, and some people are fully aware of the danger of eating such meat. But other explanatory models also exist. The ‘poison’ is not only understood as coming from what the pigs eat but also as evil spirits embodied in the pigs, which later has the ability to be transferred to the person who eats the meat and then the spirits which embody them. In some Xhosa tribes, eating pigs is part of a practice linked to special rituals. It is believed that a person can resist poison if he or she is well protected or has the ability to see whether the meat is poisoned or not. To receive protection, people use priests, faith healers or traditional healers. Some attend regular services and pray every day in order to receive protection from God but also from the ancestors. Different local healers play a crucial role in giving people such specific protection. People see the healer's role as significant. Some people find the healers meaningful and important and tend not to find the clinics useful in the same manner. The current situation is that many people are suffering without being successfully treated and lack of diagnostic tools has resulted in a failure to prevent epilepsy or to cure well-known treatable infections which are not given attention.
When it comes to applying for disability grants within the Comprehensive Social Security System there are several barriers regarding acknowledging ‘having fits’ as a disability. First, in interviews with both adult men and women, it was difficult for people to remember the prevalence of the fits; they could not easily describe the specificity which is required as vital information when applying for a grant. People with fits would rather talk about everyday difficulties – their difficulties in reaching the clinic, struggle with transport, how to find money for food and medication, the realisation that the help received did not work for long and that it required them to start all over again, their apathy and tiredness. Second, people who attend traditional healers tend to be left out of the whole system. The healers do not have clinic cards and do not register the fits anywhere, and many people who only use healers do not even have the necessary ID card. The word ‘epilepsy’ was only used by people who had attended the clinic regularly. The use of the word ‘epilepsy’ put a stronger emphasis on medicalisation, diagnostic equipment and a call for biomedical doctors with expert knowledge who understand the context of poverty. This is how one mother explained her situation:
(p.108) The financial consequences for the household are huge. Since the mother needs to be with her daughter she is not able to take on paid work. The mother struggles to get money every day, money that is needed to get to the clinic, to get medication and food. There is also the hopeless feeling when she encounters the clinic and is left with a feeling that what she received did not help in the end.
In a focus group meeting with adult men, none had received a disability grant, even though they had regularly attended clinics for years (some of these men were previously mine workers and some had never been migrant workers). The doctors had never mentioned the possibility of applying for a disability grant. As a group, they had started to question why epilepsy or ‘having fits’ was not acknowledged as a disability. The condition was described as dizziness and they felt that they could not progress in the same manner as others; they were always scared when the next fit would occur. Feelings of pain and fear in addition to the experience of losing their jobs had created the need to do something about their situation. We sat in one of the huts listening to the men openly express their concerns about why ‘having fits’ was not regarded as a disability. Their hope was that we would pass along their stories. The problem they were facing was related to difficulties in keeping their job because of their pains and weakness compared to others. Many had lost their temporary work in surrounding villages. They expressed how difficult it was for their families when they suddenly had to stop working on the house because of the fits, leaving the work to others due to their inability to perform at the same speed. They felt that they were becoming weaker and weaker, with no money or income, struggling to provide for their families.
In situations where people cannot find work or cannot work due to illness, ‘having fits’ is an example of how men have gathered these experiences and demand epilepsy to be acknowledged. Their argument draws on the fact that they feel that their fits make them unable to find work or keep work, they are not receiving appropriate medications, and hence they can relate to disability as a concept. The men have been able to gather collective demands, an act of collectivity that would not have happened without a prior process that produced a common understanding of disability. They are developing and expanding the disability concept further as a political demand.
The fourth story in this chapter shows how disability is made use of. Households become totally financially dependent on the grants as their only means of survival for building a future for their families. The poor environmental setting of unemployment creates dependency on the grants system. As we will see, this dependency is not necessarily part of an individual manipulative abuse practice, (p.109) but rather the result of a survival strategy where disability becomes a collective positive category people can act on and make use of. Further analysis emphasises how the local DPO and their work is embedded in a practice of ubuntu, also referred to in the first story. This is a practice where the family receives a position within the community in the process of naming disability.
(p.110) Nowinile uses her daughter's story to tell us about how she has received help and support, and this experience still keeps the family active in community gatherings as a family who managed. Although they received help for the girl's feet, her arms have no strength, which limits her ability to cook or clean and other ‘female’ work. After the operation, the child dependency grant (grants given to parents due to disability of a child under the age 18) was not withdrawn. The mother was managing to keep the disability identity through her status and community work. Coceka, her whole family and her mother Nowinile, have created a life around disability. Sharing experiences and establishing working relationships have given Nowinile a position in the DICAG network. The local group initiated the building of a community centre for children with disabilities. Part of this work was made possible due to the fact that Coceka's family receives adisability grant in the village. They save some of the grant money every month for education, but they also share the money among others – to give out food and coffee, for instance. The family is totally dependent on the category of disability in order to receive the grant and hence also keep their position in the community. The story shows how the whole family has managed to identify themselves within a framework of disability and created activities and relationships. Similar processes are also described in Botswana, where Benedicte Ingstad has shown how disability makes an impact on the whole family and how it inflicts the household as a whole, not just the individual person as such (Ingstad, 1997). In this context, it is interesting to question whether disability grants could be accepted as a contribution to the whole family/household as such and not specifically linked to one individual that a human rights perspective requires. Nowinile and Coceka's story shows that disability is also about relationships between people and how this shapes the perception of discrimination. Receiving disability grants becomes a matter of acknowledging being discriminated against in the past but now receiving help. The achievement is especially clear when we compare how differently disabilities are locally interpreted and the amount of attention and physical signs given in the bureaucratic process.
Conclusion: New democracy, poverty and disability agency
The anthropological material shows how the broad definition of disability is embedded in cultural representations perceived and understood as practices of Ubuntu. The morality of Ubuntu is embedded in cultural practices of sharing. We (p.111) have seen how disability experiences are openly expressed in public as words shared, articulated as experiences of discriminating practices. Furthermore, the sharing of money and food has created relationships of solidarity. The morality of Ubuntu has created a common understanding of discrimination and poverty, explained as a result of the past segregation practice of apartheid. The shared practices of Ubuntu have initiated a foundation on which grass-roots organisations for disabled people have developed locally. The production of poverty in the past has managed to gather people around a collective understanding of disability and practices of utilising disability grants. Ubuntu as a cultural representation of humanity has enabled citizens to mobilise for change in the new democratic South Africa.
The four stories presented here have shown how disability grants are being made use of – implemented in a context where people have a common understanding of the relationship between disability and poverty. People put forward their social experiences – we too are disabled – demanding inclusion in plans and policies in the new democratic South Africa. The demands of acknowledging ‘having fits’ as a disability incorporates aspects of poverty illustrated through people's expression of not being able to find work, of having no money, no food, and in having difficulties in reaching clinics when fits occur – all aspects of social experiences included in the broad definition of disability as well as Kleinman et al's (1996) understanding of social suffering.
In this context, the distribution of disability grants creates local conflicts and disagreements between the broad and narrow definitions of disability. The narrow definition tends to interpret physical impairment, physically visible signs, as a qualification for what disability is. These sign interpretation processes are closely linked to similar historical processes. During apartheid, specific visible signs (skin colour as the basis for classifications of different ‘race’ groups) became significant for structural segregation practices. These physical signs of disabilities can today easily be interpreted as representing double discrimination, adding to previous disadvantage due to skin colour. The current situation shows how these past historical practices, in conjunction with biomedical knowledge and international classifications, are part of the processes that construct what disability is. Furthermore, the distribution of disability grants puts forward the question of who the disabled are and requires a definition of what kind of impairment can count for defining what disability is. These questions enhance historical practices in conceptualising disability as an essence embodied in a person's body.
This anthropological material shows that people in the rural Eastern Cape conceptualise disability acted out as demand for acknowledging the relationship between poverty and disability. The broad definition represents the new approach in South African policies and laws, but this definition is interpreted differently among central institutions, organisations and people representing these organisations. The challenge today is to embrace the new broad approach within the contemporary social security system, with disability grants, not only in how to define disability, but also in acknowledging how people make use of the grants; in other words, to emphasise how people locally interpret the broad understanding of disability. It is (p.112) important to make room to locally discuss this broad understanding in public with the intention of creating a broader acknowledgement of the relationship between poverty and disability. The broad definition manages to explain disability in an historical, cultural and social perspective that is closer to people's understanding and their lived experiences as social suffering. Conceptualising disability becomes deeply embedded in political processes, both in how disability is defined and in how policies are implemented. This is highly significant in the process of defining research questions and in determining what needs to be investigated. In this chapter we have shown how incredibly important these questions become in shaping people's everyday life situations and how their social experiences are conceptualised locally.
We are grateful to Professor Benedicte Ingstad, Professor Arne H. Eide and Professor Harald Grimen, for reading and commenting on the typescript throughout the process. To Mrs Vuyelwa Duma for her willingness to collaborate and ability to create a secure environment during our fieldwork period. She has also commented and added valuable input at the end. To O.R. Tambo DPO for their contribution of local knowledge in the field, and to the people who wanted to participate in this study and openly share their experiences with us. At an early stage, this was a paper presented at the Nordic Network of Medical Anthropology V Nordic Research Conference in Iceland in 2007. The research was funded by the Norwegian Research Council and the collaboration programme between the South Africa Research Foundation and the Norwegian Research Council.
Borgois, P. and Scheper-Hughes, N. (2004) ‘Comment on Sidney Mintz Lecture 2001’, Current Anthropology, vol 45, no 3, pp 317–18.
Bundy, C. (1977) ‘The Transkei peasantry, c 1890–1914: passing through a period of stress’, in R. Palmer and N. Parsons (eds) The roots of rural poverty in central and southern Africa, London: Heineman, pp 201–21.
(p.115) Carabin, H., Krecek, R.C., Cowan, L.D., Michael, L., Foyaca-Sibat, H., Nash, T. and Willingham, A.L. (2006) ‘Estimation of the cost of Taenia solium cystricercosis in Eastern Cape Province, South Africa’, Tropical Medicine and International Health, vol 11, no 6, pp 906–16.
Charlton, J. (1998) Nothing about us without us: Disability oppression and empowerment, Berkeley, CA: University of California Press.
Comaroff, J. and Comaroff, J. (1987) ‘The madman and the migrant: work and labor in the historical consciousness of a South African People’, American Ethnologist, vol 14, no 2, pp 191–209.
de Koker, C., De Waal, L. and Vorster, J. (2006) A profile of social security beneficiaries in South Africa, vol 1, Stellenbosch: Department of Sociology and Social Anthropology, Stellenbosch University.
Del. Rio-Romero, A.H, Foyaca-Sibat, H., Ibanez-Valdes, LdeF and Vega-Novoa, E. (2005) ‘Prevalence of epilepsy and general knowledge about neurocysticiercosis at Nkalukeni village, South Africa’, The Internet Journal of Neurology, vol 3, no 2.
Department of Social Development (2006) Report on incentive structures of social assistance grants in South Africa, Department of Social Development, Republic of South Africa.
DPSA (Disabled People South Africa) (2001) DPSA: An empowerment tool pocket guide on disability equity, Cape Town: DPSA Parliamentary Office.
Farmer, P. (2004) ‘An anthropology of structural violence’, Current Anthropology, vol 45, no 3, pp 305–17.
Ferguson, J. (2006) Global shadows: Africa in the neoliberal world order, Durham, NC: Duke University Press.
Giliomee, H. (2003) The Afrikaners: Biography of a people, Cape Town: Tafelberg.
Green, L. (2004) ‘Comment on Sidney Mintz Lecture 2001’, Current Anthropology, vol 45, no 3, pp 319–20.
Ingstad, B. (1997) Community-based rehabilitation in Botswana: The myth of the hidden disabled, Studies in African Health and Medicine 7, Lewiston, NY: Edwin Mellen Press.
Ingstad, B. and Reynolds Whyte, S. (1995) (eds) Disability and culture, Berkeley, CA: University of California Press.
Kleinman, A and Fitz-Henry. E. (2007) ‘The experimental basis of subjectivity: how individuals change on the context of societal transformation’, in J. Biehl et al (eds) Subjectivity: Ethnographic investigations, Berkeley, CA: University of California Press, pp 52–66.
Kleinman, A., Das, V. and Lock, M. (1996) Social suffering, Berkeley, CA: University of California Press.
Kohrman, M. (2005) Bodies of difference, Berkeley, CA: University of California Press.
Kohrman, M. (2007) ‘Why am I not disabled? Making state subjects, making statistics in post- Mao China’, in B. Ingstad and S. Reynolds Whyte (eds) Disability in local and global worlds, Berkeley, CA: University of California Press, pp 212–37.
(p.116) Legassick, M. (1977) ‘Gold, agriculture, and second industry in South Africa, 1885–1970: from periphery to sub-metropole as forced labour system’, in R. Palmer and N. Parsons (eds) The roots of rural poverty in central and southern Africa, London: Heineman, pp 175–201.
Lister, R. (2004) Poverty, Cambridge: Polity Press.
MacGregor, H. (2006) ‘“The grant is what I eat”: the politics of disability and social security in the post-apartheid South African state’, Journal of Biosocial Science, vol 38, pp 43–55.
Mitra, S. (2008) The recent decline in the employment of persons with disabilities in South Africa 1998–2006, Discussion paper no 2008–12, Bronx, NY: Fordham University.
Nattrass, N (2005) ‘Trading off income and health? Aids and the disability grant in South Africa’, Journal of Social Policy, vol 35, no 1, pp 3–19.
Nattrass, N. (2006) Disability and welfare in South Africa's era of unemployment and AIDS, CSSR Working Paper no 147, Cape Town: Centre for Social Research, University of Cape Town.
Nattrass, N. and Seekings, J.F. (2005) ‘The political economy of the basic income grant in South Africa’, in K. Widerquist (ed) The ethics and economics of the basic income guarantee, Aldershot: Ashgate, pp 235–48.
Noble, M. and Ntshongwana, P. (2007) ‘No evidence of dependency culture in South Africa’, HSRC Review, vol 5, no 4, pp 6–7, South Africa: Human Science Research Council.
Office of the Deputy President, T.M. Mbeki (1997) An integrated national disability strategy, White Paper, South Africa.
O.R. Tambo District Municipality (2008/09) Integrated development plan, O.R. Tambo District Municipality.
Reynolds Whyte, S. and Ingstad, B. (2007) ‘Introduction to disability connections’, in B. Ingstad and S. Reynolds Whyte (eds) Disability in local and global worlds, Berkeley, CA: University of California Press, pp 1–29.
Segar, J. (1994) ‘Negotiating illness: disability grants and the treatment of epilepsy’, Medical Anthropology Quarterly, vol 8, no 3, pp 282–98.
Sen, A. (1999) Development as freedom, Oxford: Oxford University Press.
South African Government (1998) Employment Equity Act, no 55 (www.info.gov.za/view/DynamicAction?pageid=545&sdate=1998&orderby=act_nodesc).
South African Government (2003) Broad-based Black Economic Empowerment Act, no 5 (www.info.gov.za/view/DynamicAction?pageid=545&sdate=2003&orderby=act_nodesc).
Statistics South Africa Census (2001) Prevalence of disability in South Africa, Report No 03–02-44.
The Child Health Policy Institute (2001) Summary of literature: Disability and chronic illness prevalence in children in South Africa, Rondebosch (www.ci.org.za/depts/ci/pubs/pdf/poverty/resrep/disprev.pdf).
UN (United Nations) (2007) Convention on the Rights of Persons with Disabilities (www.un.org/disabilities/default.asp?id=13&pid=150).
Whitworth, A. and Noble, M. (2008) ‘A safety net without holes: an argument for comprehensive income security system for South Africa’, Journal of Human Development, vol 9, no 2, pp 247–63.
(1) The Comprehensive Social Security System (allocating disability grants) of poverty reduction is in line with Amartya Sen's argument that capability/functioning can affect the needs of the person. For instance, a disabled person's capability to function may be lower than that of a non-disabled person. The additional needs disabled people may have in order to achieve similar functions to non-disabled people involve additional cost. Poverty, according to Sen, should be defined as ‘the failure of basic capabilities to reach certain minimally acceptable levels’ (Sen, 1999, quoted in Lister, 2004, p 16).
(2) The welfare of poor whites including coloureds, a mixed race group with substantial ancestry from Europe, Indonesia, Madagascar, Saint Helena, Mauritius, Mozambique, Malay and southern Africa. Racial segregation in South Africa began in colonial times, but the official policy was introduced in 1948. From 1958 black people were deprived of their citizenship, legally becoming citizens of one of ten tribal based self-governing homelands called Bantustans, four of which became nominally independent states. The government segregated education, medical care, and other public services, and provided black people with services inferior to those of white people.
(p.113) (3) According to the national policy, the Comprehensive Social Security System is provided in the form of: an old age grant, a disability grant, a war veteran grant, a care dependency grant, a foster child grant and child support grant. The grants are subject to a means test (which means that the South Africa Social Security Agency evaluate the income and assets of the people applying for social assistance) with the exception of the old age grant, where the universal model is used, with a grant to all above the age of 67 (Department of Social Development, 2006). Specific diseases such as AIDS are also covered within the disability grant system when the person indicates seriousness of disease due to a specific blood test (Nattrass, 2005). The disability grant is means-tested and awarded to a person who is unfit to enter employment due to physical or mental disability (Social Assistance Act, number Act 59 1992 or Act number 9 2004). The disability grant is intended to make provision for the person's monthly maintenance with 940 ZA Rand. (The SASSA model can be downloaded from www.sassa.org.za)
(4) The Eastern Cape has a high proportion of disability grant beneficiaries: 18% (Natrass, 2006, p 23). Compared with the other eight provinces, Eastern Cape is second only to KwaZulu-Natal (O.R. Tambo District Municipality, 2008–09). From 2001 work has been done in order to restrict the grant distribution according to the abuses and corruption that were investigated in the Eastern Cape. From 2001 decisions in Eastern Cape were to be made by the medical officer alone, followed by an assessment unit and district medical officer, followed up by guidelines. A person must be significantly impaired, and if treatment is available it is necessary to provide documentary evidence of treatment compliance. In the Mthathta region, the medical officer herself was disabled and a member of DPSA, actively involved in the Mthatha branch. In three out of nine provinces in South Africa assessment panels have been used for implementation. The intention of theses panels was shaped out of interdisciplinary work, whereby a team from the local community, traditional healer organisations and health personnel carry out the assessment, not only the medical doctor. In these provinces the numbers of beneficiaries seem to be high and the methods of the assessment panels have been questioned in that regard. I was told that representatives from the DPSA were satisfied with the panels because the decisions were not only based on a medical judgement but also that of a multidisciplinary team, which in many situations managed to avoid conflict and initiate a more understandable community approach. In interviews with people in the Department of Social Development at national level it was indicated that, to a larger extent, the environment was brought in as an indicator for receiving disability grants when occupational therapists was brought into the assessment.
(5) This was taken up by the South African disability movement. It was first used by David Werner (1998) in describing the development of innovating technologies in developing countries. The term was later used as a slogan within the Disability Rights Movement, especially in the US Disability Rights Movement, and it is also strongly visible in South Africa. It is about power to the people and the demand for control: the quite militant and revolutionary claim is that politically active people with disabilities are beginning to proclaim that they know what is best for themselves and their community. Since people with disabilities have needs, this creates dependency, and further people are born into (p.114) powerlessness, poverty, degradation and institutionalisation. ‘Nothing about us without us’ points towards these power relationships with active representations (Charlton, 1998).
(6) We were three women, two of us foreign to the place (one South African ‘coloured’ disability activist from the Disability Rights Movement, one Norwegian and one local assistant). The material was collected from two research projects funded from the Norwegian Research Council. The research was conducted in collaboration between the University of Cape Town, the Department of Social Anthropology and Department of Health Science, DPSA and DICAG and the University of Oslo, Section of Medical Anthropology, Department of General Practice and Community Medicine, using multisited methodology, interviews and participant observation over a 12-month period between 2004 and 2007. I use we in the text since we were a team who collected part of the ethnography together.
(7) The material in this chapter is drawn from interviews, focus groups and the village meeting and informal and formal conversations. In addition, one of the researchers used participant observations, which here means that she was able to move between different places and situations (urban and rural, between different levels of society), and to meet different people with different experiences and positions, and followed up events that became significantly visible. The situated methods enable the researcher to see connections and to understand people within a local context, to grasp conflict, disagreements and agreements. This position gave a specific insider and local perspective since the researcher participated more in everyday life. This material draws on 12 months of fieldwork, where one of the researchers lived in a household in Mthatha.
(11) The number of 10 was directed from the Department of Social Development. It was difficult to find out why it was 10 and the distributions process was always under a process of development, so today the number might have changed.