Virginia Bond ZAMBART Project London School of Hygiene & Tropical Medicine The School of Medicine, UTH HIV/AIDS and

1. Stigma when there is no other option:“The poor even segregate the patient because there is nothing they can do to help” [Secondary School Pupils, Rural Zambia] Virginia Bond ZAMBART Project London School of Hygiene & Tropical Medicine The School of Medicine, UTH HIV/AIDS and Food and Nutrition Security An International Conference Durban 14-16 April 2005

2. What is Stigma? • A spoil identity due to “an attribute that is deeply discrediting” [Goffman 1963] • HIV-related stigma – the social process of combining the assumed presence of HIV virus in a person or group with a perceived notion of culpability. “Disease stigma is…negative social “baggage” associated with a disease” [Deacon et al 2004] • Critical elements – causes, experiences, consequences, coping strategies

3. Experiences of Stigma [Sartorius 2004] Devaluation Exclusion Disadvantage • Different Types of Stigma Experiences: • Felt (anticipated) • Enacted • Internalised

4. Key Dimensions of the Intersections between Poverty and Stigma “When someone is sick and the family is poor, there are talks over what to eat, small things which need money. This brings problems in the family. Where will the family get the money?” [man living with HIV, rural Zambia]

5. The Wider Context – “other things happening” • Stigma should not be isolated from other social, political, economic processes and phenomena; stigma occurs within these • Zambian society staggering under weight of economic hardship, impact of HIV, poor education and health services, disillusionment with government, inequality • Research sites – urban and rural microcosms of wider trends. “Very few children go to school and very few people go for work...People are failing to meet eating needs because they fail to find money” [barber, urban Zambia]

6. Burden Trajectory in a “biting economy”[15 year old boy, urban Zambia] • Economic burden of PLWHA – not able to contribute to household living when sick, and soak up money, energy, time, space. • Trajectory of illness reflects trajectory of burden, with “disrupted”, “disturbed”, “shattered” plans, activities and budgets. These are pitted against spiraling treatment and dietary needs and an illness that “takes too long”. • Households with narrow resource base have “resources milked” – sell assets, sex, borrow money, even steal – to meet basic needs of patient (i.e. to pay for treatment, food, soap and water)

7. “People in this area are living under poverty…very few people manage to look after these people [PLWHA] if you look at the current situation. As of now, people are just feeding on unrecommendable food “ka pamela” per day, chiwawa and impwa. They think if they start again looking after those people, they are actually putting themselves in problems”[social worker, urban Zambia] “A lot of money or wealth will be wasted during that nursing period and, as a result of the illness, you tend to borrow a lot and tell lies”[young men, rural Zambia]

8. Limited Capacity To Cope • Language used reflects desperation and limited capacity to cope over time – “it is too much” [urban health workers], “no, I cannot bear with this kind of problem” [NGO manager, rural Zambia], “it is burdensome” [rural traditional healer], “households are not prepared to handle” [urban health worker] • “If someone has been looking after a HIV-positive person for a long time, he will think ‘I am just wasting my time. Why should I care for this person? He just spending my money for nothing – after all he will die’…after a long time the care will drastically change” [young men, urban]

9. Poverty and Blame Intertwine • Within explanations of poverty, underlying judgements embedded in a language of blame often creep in which justify the discrimination and distance the carer from stigmatising actions and consequences • But these painful decisions made in context of narrow options lead to discriminatory actions which are experienced as stigma.

10. “Some household members say it is a burden and some of them are the people killing their own children very fast. They leave them to die slowly, painfully because they insult them and say bad names, “You alone went making money” and allsorts of words which makes the patient have depression. They stop buying medicine, saying “we can’t manage”. If you [the patient] want a type of food, they say “you have to eat what we have because we have no money. We never costed you but you costed all these, all the problems you have brought into this house”. Others are shunned very much” [nutritionist, urban Zambia]

11. Factors that determine degree & direction of stigma in context of poverty • Quality of the past relationship, including degree of reciprocity in past • “There are some people even when they were ok, they were so useless to the family and when such people are found in this situation [with HIV and AIDS], yes they are considered a burden” [headmaster, urban Zambia] • Household Status • Blood ties – “you cannot throw away your own” [elders, rural Zambia] • Membership of marginal groups – the poor, women, orphans, rural dwellers less able to buffer this type of stigma, more likely to be blamed and rejected

12. “the disease becomes deeper and deeper”[headman, rural Zambia] • For “the dog poor” – “if it’s a poor person, this one that just has a pair of tropicals [flip flops], what can he leave behind? So they abandon him” [secondary school boys, rural Zambia] • For orphans – looked on “as the remains of the dead person” who “only bring problems” and whose “needs are always a second priority” [youth officer, rural Zambia] • For women – a woman with HIV and AIDS “will be isolated like a hoe without a person to use it” [traditional healer, rural Zambia] • For rural dwellers – “the village is now the dumping ground” [TBA, rural]

13. “This picture is about a girl whose parents died of AIDS. She is sent to the market to buy things and on the way home the money gets lost. After reporting back to her aunt- the aunt just poured hot water on the orphan, but she can’t pour hot water on her own children.” Girl, aged 12, Misisi Out of School Group

14. Orphans are given more work ‘The orphan is sent to the market to buy vegetables and chicken, while others are eating’ Girl, aged 9, Rural Street Children

15. Rural options more limited • “This patient at home has disturbed them. They don’t finish the work at the fields properly. The patient also complains to them saying that they will take a long time to give him food. They will also say that, ‘At the field, that is where your food comes from’. They will blame the patient all the time” [women farmers, rural Zambia] • Seasonal food scarcity and farming activities, shortage of cash, distances & rural deprivation [limited services] make it hard to care adequately. Economy more inflexible.

16. Wider urban options • If unable to cope can and do turn to hospice, HBC, churches, orphanages, Umoyo training centre, Foundation of Hope. There are more places to turn to. • “financially they would rather not keep them at home and will take them to the hospice if they are very sick” [gatekeepers, urban Zambia] • “if you cannot afford to look after a HIV patient nowadays, we have home based care centres where they give support. These people will give assistance” [elders, urban Zambia] • More cash in circulation, easier to borrow money/raise cash. More flexibility.

17. Combating Stigma within context of poverty • Household capacity is stretched in poverty; there is only so much that people can cope with. • Action may be driven by poverty, experience is stigmatizing • One strategy to reduce stigma and discrimination related to HIV and AIDS in the context of poverty is to alleviate household stress by provide services, better services, special services and support • Anti-Stigma education should address practicalities e.g. skills, understanding, compassion and external support to better manage HIV in the household. C/f Anti-Stigma toolkit, Module D, Caring for PLHAs in the Family

18. Kamwala, Misisi & Choma District Communities Sue Clay Levy Chilikwela Titus Kafuma Kamwala & Choma Research Assistants KCTT Child Counsellors & Consultant Gita Seth Laura Nyblade Ross Kidd Jessie Mbwambo Aklilu Kidanu USAID LSHTM Zambart Project KCTT DFID Acknowledgements