With 40 million people in the world living with HIV/AIDS, the epidemic is having a profound impact on all aspects of people’s livelihoods. Using a livelihoods framework this paper explores how the HIV/AIDS epidemic touches not only `human capital’ (health) but all aspects of the lives of those infected and those living in communities affected. The need to look beyond health interventions in mitigating the epidemic is shown by highlighting the impact on financial, economic, social and physical capital as well as looking at the influence of the epidemic on seasonal and other forms of vulnerability and the policy/institutional environment in which livelihoods are constructed and sustained. It is stressed that those living with HIV/AIDS have other and perhaps more pressing concerns than sickness, they are still people not just `patients’, and they have livelihoods to support and sustain. A contribution that livelihoods’ approaches can make is in highlighting the impact of the epidemic in all areas of peoples’ lives and thus help to ensure that when prioritising responses the non-health aspects of the epidemic are not neglected.
As we enter 2002, 40 million people are living with HIV/AIDS. Nearly 30 million of those people are living in Sub-Saharan Africa, eight million (at least) in Asia. What does it mean to be `living’ with HIV/AIDS? It means earning a living, raising a family, making a home, relaxing, joking, weeping and dying.
Just like anyone else. `Living with HIV/AIDS’ can alter the dimensions of a life, but it does not necessarily change the contents of `a life’. We sometimes forget that. We forget that people, many people, carry the HIV virus, sometimes they suffer AIDS related illness but they do not die immediately.
HIV/AIDS is not an automatic death sentence. With good nutrition and adequate health care life for most continues, for years.
Elizabeth, my friend for 12 years, has been `living with HIV/AIDS’ all the time I have known her. She lives in a small town in Uganda. Her latest letter, written on the 5 th
2001, tells me that `I have been working, but being disturbed by various health problems
[…] the only problem I now have is failure to hear properly.’ She goes on to say `My children this way are doing well at school. Charles [husband] is also okay and now spends most of his time at home cultivating and looking after the domestic animals’.
Living with HIV/AIDS is not only a fact of life for those who are HIV positive.
Family and friends, neighbours and colleagues who may not be infected themselves also live with HIV/AIDS, and that is something children and adults must learn about and live with. And must build livelihoods around.
In this paper I want to use the livelihoods framework to think about livelihoods in the context of the HIV/AIDS epidemic. The livelihoods framework, a tool we can use to improve our understanding of livelihoods, helps us to see how `livelihoods fit together’. If we use it to look at the impact of the HIV/AIDS epidemic on a person’s livelihood it can help us to look at linkages between the impact of the disease on health and human
School of Development Studies, University of East Anglia, Norwich, NR4 7TJ, UK. Email: J.firstname.lastname@example.org
18/2/02 capital, where much of the emphasis in research and development has to date been placed, and other parts of the framework and, hopefully, guide interventions that accept and build on those linkages.
HIV/AIDS can and does affect every part of a livelihood. Some livelihoods are more obviously touched than others. The Guardian on 28 th December 2001 carried the story of Salgaa, a truck stop like hundreds of others in East Africa.
Salgaa is a work place for 300 prostitutes. It was rainy and muddy when
Kevin Toolis, the journalist visited. He comments `everyone learns to live with mud, just as prostitutes learn to live with the ever-present danger of the
In the era of the AIDS holocaust, the average working life expectancy of a Kenyan prostitute is just seven years. […] Everyone in Kenya knows about AIDS. It is everywhere, cramming every hospital bed, touching every family in the land, stripping the rich and the poor of their brothers, mothers, fathers and sisters. Officially, AIDS has been declared a national emergency by President Arap Moi. AIDS stares out of the daily pages of obituaries that fill the back of every newspaper. […] it is hard to ignore because 250,000 Kenyans out of a population of 29.5 million died of AIDS last year.
Kevin Toolis, The Guardian 28 th December 2001, G2, p2
HIV/AIDS is not, as we well know, only an African tragedy. Hidden away in many families in Asia and Eastern Africa, the impact of the virus is distorting lives and livelihoods. Harsh Mander (2001) tells the story of Deepak, a young man who has set up a support network for HIV positive people in Manipur
(India). Deepak is living with HIV/AIDS acquired, apparently, through intravenous drug use. Mander recounts the story of Deepak and his family’s long fight to stop him using drugs and coping with the discovery that he is
HIV positive. Knowledge that led him with six friends to set up the support network, a very different way of life and livelihood from the one this middleclass young man may have expected.
Deepak looks like any average young person in the Imphal Valley. His clothes are trendy, and he sports an earring in one ear. But when he speaks today, there is a difference. I have learnt that how long one lives is not important, he says with conviction. What is important is how well one lives. I keep running these days, because there is so much to be done. I know
I will die one day, like any of you.
Harsh Mander (2001)
Unheard Voices. Stories of forgotten lives
Telling people about HIV/AIDs, supporting people living with the virus, comforting families, fighting discrimination and stigma are a way of life for people like Deepak. Caring for people with AIDS related illness is the unpaid work of many, often women, in all parts of the world. Carers who can not give time to till the land, who lose jobs because they cannot regularly get to work, who leave school to care for others and shoulder unfamiliar responsibilities because of the deaths of their families and friends.
… a 35 year old woman whose husband had died earlier in the year. She was living close to her elderly mother-in-law, who was too weak to help. She had seven children. The youngest two, aged six months and three years, were sick. Her son aged 16 and daughter aged 15 cared for their mother. On two occasions the eldest son went to fetch his maternal grandmother, who lived some distance away, when he believed his mother to be dying. On both occasions when this proved not to be the case, the grandmother returned to her own home because of her own family responsibilities. When the woman did die the extended family gathered for the funeral, but returned to their homes after the funeral rites leaving the 16 year old boy as household head in charge of his six siblings.
(1993) `The Extended Family and Support for People with AIDS in a Rural
Population in South West Uganda: a Safety Net with Holes?’
Let’s look at the livelihoods framework and think about some of the ways the
HIV/AIDS epidemic is altering the shape of peoples’ lives, a shape which sustainable livelihood approaches need to be sensitive and responsive to.
Sickness can be viewed as a part of the Vulnerability Context, particularly if one thinks in terms of a region or country where HIV prevalence rates are high and the risk of infection from unprotected sex, contaminated blood transfusions as well as mother to child transmission are a reality of life, something everyone may be vulnerable to. As well as being a part of the vulnerability context, HIV/AIDS compounds the problems posed through vulnerability to natural disasters, seasonal changes and the shock of accidents or sudden (non-AIDS related) illness. Such `vulnerabilities’ do not go away, and may be felt more keenly.
Health and well-being are a part of `human capital’ and it is in that part of the assets pentagon that most emphasis has been put in thinking about the impact of the epidemic on livelihoods.
AIDS-related illnesses affect the health of those infected with the HIV virus.
That is perhaps the most obvious impact on human capital. Good nutrition and affordable, appropriate, health care, can make a big difference to both the quality and the length of a life. Providing affordable and effective health in response to a virus that is quickly adapting and becoming resistant to some
18/2/02 of the drugs used to treat its affects is not a simple matter. For many people, accessing health care that provides creams or herbs to ease a sore or tablets to calm a fever can make a great difference to well-being. Many studies tell us that in places overwhelmed with people suffering with AIDS related illnesses, families and friends hard-pressed to pay for care stop providing more than the bare minimum for someone who will `die anyway’. For those who are not infected, the burden of the virus takes its toll. Worry, anxiety about care, about paying bills, about living with the stigma of having HIV in the family, about coping with the death of a loved one: these things affect mind and body. The health of carers’ suffers, grandmothers who should be enjoying a quieter life struggle to care for young grandchildren and their own dying children.
A carer’s human capital is lost to their office work, or to tilling the fields.
Those who travel to take care of other family members are not available to participate in their own family decision-making, caring, farming, small business etc. Children who are carers lose out on school, lose an education that might have equipped them better for the world. And knowledge is lost, knowledge of crops or medicines or of the history of the family, the community. That knowledge, memories, which are part of our `capital’ that is shared and enriches lives.
And the very act of reproduction is dangerous because of the virus spread through sexual contact. So the reproduction of the domestic group is threatened.
Land, forests, water, crops and animals are all affected by the HIV/AIDS epidemic. Land may not be tilled and certain crops may not be grown because of the lack of labour, and land may be sold to pay medical fees, funeral costs or everyday household expenses. Forests may not be managed, with some areas being over harvested because they are close to home for labour starved households. Depleted water bodies may be over-exploited as a household with a sick person who requires frequent washing takes more than their usual share.
The management of land, forests, fish, animals and water has to adapt to altered demands and use.
Access to credit for people living with HIV/AIDS is something some NGOs are now seeking to address. Like insurance and investments, who would lend money to someone who has an illness with a death sentence? Who would lend to a family where someone has died of AIDS, how do they know that others are not also infected? Access to credit has never been easy for the poorest sections of communities, and seldom has it been easy for women.
HIV/AIDS has made it harder. High interest rates, to cushion the risk for the lender, make loans prohibitive, undermining even the most modest agricultural or business development.
The sick or those busy with care cannot repair a leaking roof, fix a faulty engine on the motor-bike, or join in community efforts to clear clogged drains in the road. Infrastructure deteriorates if people have no time, energy or the numbers to maintain it. Field terraces, which depend on regular maintenance crumble, soil fertility declines without people to spread manure or leaf litter, and to make compost. Clogged irrigation channels adversely affect growing crops, stagnant water in the clogged channels encourage mosquitoes that may spread dengue or malaria and tsetse flies. Cattle-proof fences and trenches fall down without regular care and animals wander off or destroy crops and young trees.
Small tasks that are neglected become bigger, more labour intensive work, which left undone have profound implications for the maintenance of natural resources as well as infrastructure.
Physical capital, like some forms of natural capital, is sometimes convertible: a house or a bicycle may be sold to pay bills, to cope with the toll of the epidemic.
Death and sickness erode social networks. Friends and families are lost making the maintenance of the kin group more difficult. Cultural events diminish… except for funerals. Some cultural and social events may change because of the risk of HIV/AIDS or become less attractive to those afraid that social activity may spread the virus.
In the absence of formal credit, the loss of family and friends may spell the end of access to informal, affordable, credit as well as the loss of a trusted carer for a child or old person.
Social capital is often undermined by the stigma of being someone affected by HIV/AIDS. As one young woman living with HIV/AIDS in Uganda once told me `I feel that even good people when they are being nice to me, all the time… underneath they look at me as a wrong doer.’ It is not just the categorising someone as a `wrong doer’ there is also the fear of contamination. It is easy think that the fear of touching someone with AIDS, much publicised in the 1980s and 1990s is a thing of the past (one may recall the publicity around the Princess of Wales’ shaking hands with men living with
AIDS on visits to hospices), but the stigma associated with HIV/AIDS infection persists. Social exclusion, resulting from the fear others may have of AIDSrelated illness, haunts many sufferers and denies them the support and
18/2/02 comfort that comes from friends and family as well as potential support organisations.
Policies and institutions can play a key role in ‘transforming’ livelihoods. An aim of sustainable livelihoods approaches is to build or reform policies, laws and institutions so that they provide better opportunities for the poor and to ensure that attention to HIV/AIDS is not confined to health strategies and policy making.
Government policy to HIV/AIDS can profoundly affect the impact of the epidemic. Look at the contrast between Uganda and Kenya, in the former
President Museveni was open in his response to the epidemic from the late
1980s and encouraged the people of Uganda to be so to. In Kenya, the
President there has recently declared AIDS a national emergency, but still only one person in Kenya has `publicly died of AIDS’. It is not an easy form of death to accept. Many people, throughout the world, are dying of `a long illness bravely borne’. Doing away with the stigma and discrimination which goes with this sexually transmitted disease is more than any Government has managed to do, even Uganda. Doing away with the ignorance that surrounds the causes and spread of the disease as well as its prevention is a major task for government and non-government bodies. The private sector, often because their industry is badly affected, is also in some places putting in place support for those who are infected as well as education campaigns to try to stem to growth of the epidemic.
Public denials that HIV-infection causes AIDS, most famously by Mbeki in
South Africa, do nothing to support those working to halt the epidemic.
Laws, policies, campaigns against cultural practices which may spread the virus (such as widow-inheritance) have little impact when public figures spread mis-information. HIV/AIDS strategies for governments, nongovernment organisations, multi-nationals, bilateral donors etc, can only be more than paper statements if senior people take responsibility for moving the words into action.
In the next section I take the bits of the framework and link them together by looking at one woman’s life.
Fitting the pieces together
Theopista in the story below lives with HIV/AIDS, even though it is not mentioned in the story. Relatives and friends have died, perhaps she is infected herself, and the agricultural landscape around her home in Masaka
District, in Uganda, is altered by the impact of the epidemic. But Theopista still needs to feed her children and manage her household.
The household head, Theopista, is a woman in her thirties, living with three of her youngest children. She is separated from her husband and has come to live near her father.
Her father gave her one acre of land, which she cultivates. She also keeps a pig and a few
18/2/02 hens. Because the children are young Theopista does nearly all the household tasks and cultivation herself.
The house was already on the plot when Theopista came; it is an old structure made of mud and wattle with a grass thatched roof which leaks. She talks of building her own house when she has money.
Her older children are staying with their fathers. She expects her other children to join their fathers or their fathers’ relatives as they grow older, as is customary in this patrilineal society. She has a lover in the village by whom she has had one child, her youngest. This man has helped her with a few expenses, but he has another wife and family, so he can not be depended upon.
In order to earn money for her family Theopista digs for other people in the village.
In this way she can get food and sometimes cash. If she manages to harvest more than a tin of beans from her own land she sells some in the village (while trying to keep a tin for home consumption). She uses the money to pay the school fees of the oldest child staying with her and to buy paraffin, soap, salt and occasionally clothing from the market.
In pre-harvest months, when food is short throughout the village, the household members eat only one meal a day, which consists of cassava and sugarless/milkless tea or maize meal porridge. Even at good times the family rarely eats meat or fish. However, at times like Christmas Theopista tries to earn enough money to buy some nile perch (fish) or some beef or goat meat.
At times when Theopista anticipates that extra cash will be needed, for example at the beginning of the school year, she tries to team up with a friend to brew beer or make waragi (locally distilled liquor). However, sometimes, during prolonged dry periods the mbidde (bananas used in brewing) may not be available or the household head may be sick and unable to work, a pig or some hens may be sold to raise the cash needed or a friend
(often the lover) will be asked to lend/give the household some money.
When someone in the household is sick Theopista usually prepares some herbs to treat them. Tablets may be bought from the shops. The children and Theopista are often suffering from colds and fever.
Theopista very rarely has visitors who stay for more than a half a day or a day, so she seldom has to spend extra money on entertaining guests.
If a crisis does not occur the household can cope with the costs of everyday life
Theopista, however, despairs about ever having enough surplus cash to build her own house because any money she gets is soon used up on household expenses.
Adapted from Janet Seeley (1993) `Searching for indicators of vulnerability: a study of household coping strategies in rural South West Uganda’ MRC/ODA report pp. 19-20
If we think about Theopista’s livelihood using the livelihood framework to interpret what we are told in the story, we would think of it something like this:
The vulnerability context in which she lives includes seasonal drought (which affects her wage labour work as well as brewing/distilling) and the times of the year when colds and flu may be more common. But it also includes the fact of living in a place where at least 15 percent of the sexually active population is HIV positive.
Theopista is separated from her husband but she has a lover and she has had other sexual partners before her husband. We are not told her HIV status, but she would appear to be vulnerable to infection because of the level of risk in the community around her. So are her children. Her social support network is also vulnerable, if those who help her fall sick and die they are no longer there for her and she may use some of her money, goods and time to help them.
Theopista’s assets, or capitals, may categorised in the following way:
Strength and health for digging etc, skills in brewing and distilling, knowledge of cultivation, children’s education
Land, crops, pig, hens, medicinal herbs
Income/savings from labouring, selling beans, beer and waragi
Children, father, lover, neighbours
As for policies, institutions and processes, we know little from the story of
Theopista’s contact with local government but like everyone else in her community, she is subject to the rules and regulations of the Local Council, customary law and national government policy. This includes regulations on the sale and transporting of alcohol (the infringement of which would lead to confiscation of the alcohol and a fine), and Government health centre and school fees. It also includes the protection of her customary right to land
(which may be disputed by her natal family once her father dies), and the access her children may have to their fathers’ goods.
Levels of government
We do not know how powerful, traditionally, her family has been in the area.
So we cannot judge what protection local patron/client relationships may afford her, but given she has moved back to her natal home and she is accepted there, this gives her some security. Theopista will see and hear health campaigns, agricultural extension and other messages put out by local and national government as well as NGOs. She will also be influenced by the norms of the Roman Catholic Church, which is very well established in her area.
Theopista’s present livelihood strategy, combining various income generating activities with loans and gifts from family, is barely sustainable. Theopista copes. She does not thrive. If sickness, for example, befalls her or her children, the present strategy cannot be sustained. Living in the context of the HIV/AIDS epidemic is an ever present threat to her livelihood.
So what next?
Just as the impact of HIV/AIDS can be seen at every point of the livelihood framework, efforts to address the impact of the epidemic must also occur at every one of those points. The way to address the impact is not just through trying to rebuild assets: it is through supporting structures and processes that can cope with and support the diverse lives people live, and in finding ways to make them safer. Be it through better health care provision, supplies of condoms or through finding ways to address the fundamental cause of the spread of much of the epidemic: poverty and inequality.
Kika is a 35 year old widow with 5 children who lives in the outskirts of Kampala. […] Kika is a tall, straight and beautiful woman who admits to an occasional headache or fever and tiredness. Grateful as she is for her good health, she nevertheless has great concerns. Chief among them is her young daughter who plays nearby as we talk. When she wanders over for a hug and crawls onto Kika’s lap for a short nap, love and worry transform Kika’s face and the discussion changes course. The confident face transforms into that of a pensive and frustrated mother. She is, she now relates, simply desperate for work [she was `re-trenched’ from her job as a prison warden and her husband’s family threw her out of her marital home when her husband died] and money that will provide a future for the children. `I don’t mind dying. Everyone dies. But I want work. I have ideas for work. I have land. I can grow flowers to sell in the market, but I need money for seeds and to hire someone to dig the land’. Holding her head and staring at the sleeping child in her lap, she again reiterates, `I don’t worry for myself. I am free. It is for my children. Joseph needs books and shoes for school’.
TASO and WHO (1995) TASO Uganda. The Inside Story . Participatory evaluation of
HIV/AIDS counselling. Medical and social services 1993-1994
TASO and WHO, Kampala, p. 71
Using the livelihoods framework to assist in analysis, rather than just focusing on the impact of the epidemic on health, enables us to see not only what is being negatively affected, for example finding that land has been left uncultivated because of time or people to plant and financial resources have been used up on treatment costs, but also what strengths may be built upon: what are viable livelihood alternatives, what support mechanisms exist?
It is relatively easy to focus at the household and community level, harder to examine policy and processes are local, regional and national level. This is an area where more work needs to be done, not only to look at policy directly related to HIV/AIDS, but also how other policies (perhaps on land tenure, or contraceptive use, or education) may impact upon those living with HIV/AIDS and what areas attention may be needed to strengthen livelihood options and improve the quality of life for those affected by the epidemic.
The Governments of many of the worst affected countries are engaged in supporting strategies to mitigate the impact of the epidemic and prevent its’ spread. The Minister for Health, Government of South Africa, in October 2001 for example, observed that his Government’s `Partnership Against AIDS’ was launched
`to ensure a broad-based and multi-sectoral societal response, based on the recognition that no single sector, ministry, department or organisation is solely responsible for addressing the HIV epidemic… By this time next year, when we gather to mark the fourth year of partnership, I hope to hear more stakeholders and sectors have joined the partnership, and that cooperation in fighting the disease has intensified’.
A contribution that livelihoods approaches can make to this aspiration is in highlighting the impact of the epidemic in all areas of peoples’ lives and thus help to ensure that when prioritising `broad-based and multi-sectoral’ responses the non-health aspects of the epidemic are not neglected.
It is essential to remember that people living in countries decimated by the
HIV/AIDS epidemic as well as those living where the mark of the epidemic is only just being recognised, are just like those living without HIV/AIDS. They are people trying to achieve livelihood goals (including productive activities, investment strategies, reproductive choices, etc.). Our aim is to help those living with HIV/AIDS to live better lives themselves, to achieve their goals and thus to build sustainable livelihoods for their families.
Efforts to address the impact of the epidemic need to:
Help rebuild all assets
Support structures and processes that can be flexible in sustaining the diverse lives people lead
Share learning on what has and has not worked
More work is required at local, regional and national levels to look at reform of policy beyond policies directly related to the health aspects of
HIV/AIDS, which may impact on affected people, for example:
Reproductive health services
Document and share knowledge on the impact of HIV/AIDS on livelihoods.
And perhaps most importantly:
In all development interventions to ensure that those living with HIV/AIDS are treated as people, with diverse lives and livelihoods, not just as