Love versus stigma

HDN Key Correspondent Team, September 2006

Namibia: "I need love," says Emma Tjirimuje, an HIV positive mother living in Katutura, a vast, poor, black suburb in Windhoek, Namibia.

Emma is struggling to live positively with HIV, working as a volunteer counsellor for Lironga Eparu, the organisation of HIV positive people in Namibia. Emma's biggest wish is to have a ‘love centre’ for HIV positive people.

The majority of inhabitants in Katutura live under the poverty line, just part of the 75 per cent of the population who live in poverty. It is also the most densely populated part of the capital. This legacy of the colonial political system of apartheid is a sprawling township made up of a mixture of modern standard bungalows and box shaped cabins that give way to tiny tin shacks of impoverished rural immigrants living on the outskirts of the former 'blacks only' township.

"People need to know that HIV infected people need love. I wish I could open a love centre for them… the HIV virus is nothing when you have your family's support, but when you can not even walk to the cuca shop (neighborhood shop) without people whispering loudly behind you and others calling out, your soul is slowly dying, and the rest of you will follow.

It is painful, really, I wish I could find some money to build my own house and get away from the rest of my family," Emma says.

Emma says she is managing with the disease, but she is failing to manage her family's reactions to her condition. She is a widow whose husband died of HIV/AIDS and now she has no means of survival except to live with her mother, siblings, her children, and their cousins under one roof.

"I know I would be happy if I could find a way in which I could leave my family to go and live in a house far away from Windhoek with my three children, away from the stigma, the hurtful comments. Imagine, if I sit in the toilet for more than ten minutes when I have a running stomach, someone will come and knock, even a child and they shout - 'Hey, Mrs HIV positive! What are you still doing in there?' I can no longer kiss my nieces, their mothers, my sisters, complain bitterly. I cannot use the same cups as everyone else, I can only share with my children. My youngest child understands, but nobody else really does…"

Many positive people around the country echo Emma's lament. Doctors and nurses testify that often they have to deal with the psychological rather than the physical effects of the HIV virus.

"People are dying because they have no one to discuss their situation with them… No one in whom to confide. They pine away, eventually becoming so depressed that they decide to stop taking their medicines and then HIV/AIDS quickly sets in," said Tamia Kudzai, a doctor working at a state hospital. "It is clear that those who have support from their parents or other relatives fare much better than the ones who cannot tell anyone of their condition."

The United Nations Development Assistance Framework for Namibia (UNDAF) has identified stigma as one of their priority points in the fight against HIV/AIDS from 2006 to 2010. UNAIDS Namibia Country Coordinator, Salvatore Niyonzima, says one of the main requirements of UNDAF is to strengthen the response to the HIV/AIDS epidemic.

According to a December 2005 UNDAF report, significant proportions of Namibians, particularly rural women and isolated groups, do not have complete and accurate information on HIV/AIDS prevention or treatment strategies.

"Many Namibians do not want to get tested for HIV due to stigma and discrimination. The roll out of ARV treatment and PMTCT+ [prevention of mother to child transmission] should begin to mitigate the stigma, but access is still limited and understanding of treatment, low.

Strong interventions must be implemented at all levels to counter the vicious cycle of stigma, discrimination, fear, lack of human rights of women and alcohol abuse," says the report.

Chilombo Mwondela-Katukula
HDN Key Correspondent, Namibia
Email: correspondents@hdnet.org
Web: www.healthdev.org/kc
HDN 2006

Nothing to be ashamed of

ALTHOUGH MOST DISCUSSIONS AROUND HIV FOCUS ON SUB-SAHARAN AFRICA, MANY PEOPLE IN ASIA ARE NOW POSITIVE. BUT SILENCE, PLUS LACK OF EDUCATION AND TREATMENT, MEAN THAT MANY LIVE WITH DISCRIMINATION AND STIGMA TOO

One day Sabitha Mallick was a respectable mother of two children, a wife and an agricutural labourer living in a village in Orissa, one of India's poorest states hugging the Bay of Bengal. The next, her family became pariahs: banished from her in-laws' home, shunned by her neighbours and banned from using the village well and footpaths she had trodden all her life.

What changed the villagers' perception of Sabitha and her husband was the news that the couple had HIV. Her husband, a migrant labour who lived in Mumbai to work as a whitewash painter, had become gravely ill and returned to Orissa where he was tested for the virus.

While she nursed her husband until the time of his death in the small hut they'd been forced to live in by her in-laws, Sabitha faced insults and cruelty from her community. "My in-laws told me to go away from the village. I said, 'Where will I go?' When I went to the tube well, the villagers stopped me using it by blocking it. They said, 'If you wash your clothes here you'll pass on the infection.'"

Her children, who are not positive, would come home from school crying because their classmates refused to play with them. "The harassment made me want to kill myself," Sabitha says.

NGOs say Orissa is an extreme example of the kind of humiliation and mistreatment experienced by people living with HIV in India. Recently there have been cases of positive people thrown out of government hospitals, evicted from their homes by landlords, children of infected parents taunted in classrooms, water from wells denied to HIV positive people, and families rejecting their positive relatives.

Fuelling the discrimination in Orissa, say NGOs, is a lack of training for health workers on HIV care, awareness-raising projects and no access to anti-retroviral drugs for infected people.

In addition, the state is among India's most culturally conservative, with myths prevailing about how the virus is transmitted and cured. "Doctors are giving positive people wrong information; herbal doctors are selling them tablets claiming it'll cure them," says Stanley Joseph, capacity building officer for the Indian Network for People Living with HIV/Aids (INP+), a rights organisation formed by and for positive people, supported by Concern Worldwide. "There are common beliefs that having sex with a virgin or drinking donkey's milk will get rid of HIV."

Although Orissa has been deemed a "low prevalence" state by the Indian government, agencies focused on HIV care and support say that six districts within Orissa now have high prevalence rates of HIV/Aids. Agencies believe that the actual number of HIV infections is up to 10 times higher than the official figure of 2,500.

Driving up infection rates are Orissa's high incidences of poverty, displacement and industrialisation. Moreover, experts say, the fact that the state is prone to floods and drought has concentrated the government on emergency relief at the expense of HIV/Aids prevention and intervention.

High prevalence districts in Orissa include those in which there are families of migrant workers who travel to areas such as Mumbai where there are high infection rates. Other high prevalence districts contain transit points with a large number of truckers using sex workers and tribal areas where there are fewer restrictions on sex outside marriage.

"Orissa is lagging behind other states because it is completely without state leadership on HIV," says Matthew Pickard, country director of Concern Worldwide India. "It's not something that's being given consideration in the mainstream."

Pickard warns that Orissa's lack of HIV/Aids care and intervention is putting more people at risk of infection. "We've seen what has happened in Africa when people were silent. All those risk factors are in India and there isn't enough being done."

India is already home to the largest population living with HIV. Some 5.7 million Indians have the virus, overtaking South Africa, which has 5.5 million, this year. It is mainly passed through heterosexual sex, except in the north-eastern states where injecting drug use is the commonest mode of transmission.

Although India has a low HIV-prevalence rate, a UN development programme report released in July argued that in a highly populated country such as India, the label "tends to undermine the gravity of the epidemic". It predicts that if the spread of the virus is unchecked, more than 16 million people will be infected by 2016.

Tracking the epidemic in India poses a serious challenge as women and children are increasingly infected. Gender prejudice, leading to men assuming the decision-making role and women's difficulty in negotiating safer sex, is a major obstacle to prevention, according to the latest report by the UN General Assembly Special Session on HIV/Aids in India.

However, stigma and discrimination is also one of the biggest barriers to preventing further infections; it discourages people from being tested and to access care, support and treatment in order to lead production lives.

Widows who are HIV positive in India face more stigma and discrimination from the family and community then men, the UNDP report found. Over 90% of widows stop living in their marital homes and many are left destitute.

Sabitha Mallick was one of them. Her suicidal feelings and failing health prompted a doctor to refer her to Utkal Sevak Samaj (USS), an NGO based in Cuttack, a city near to the state capital Bubaneswar. For six months, Sabitha received support from a peer counsellor, a fellow widow who was HIV positive. "I talked about my feelings of despair, my fears about how I would feed my children, how I would educate them, and all the harassment I'd had."

The counselling enabled Sabitha to cope and encouraged her to develop a plan to be financially independent. She is one of half a dozen HIV positive widows the organisation is currently training to be tailors. USS also took a medical team to Sabitha's village to raise awareness among her neighbours about how the virus is transmitted.

The intervention will enable Sabitha to return to her village once her training is finished and support herself and her children financially. But the absence of anti-retrovirals and medical care in Orissa persists, and looms large over her future. "My husband was so unwell at the end of his life. I took care of him. But who will take care of me?"

FIGHTING STIGMA: CAMBODIA

Ms Sreymom, 43, a widow with five children, lives in Bakan district, in the Pursat province of Cambodia. She was infected with HIV by her husband who died in 2000.

"HIV/Aids destroyed almost everything about my life," she says. "I lost my beloved husband, who was the only wage earner in the family. I had to sell the house, the farming land, and pawn the land for my house to pay for my husband's treatment. I only had one bed left and I begged my neighbour to allow us to shelter under a tree on their land."

She experienced discrimination and a total lack of understanding. "All the villagers were afraid of us. Even when my children tried to sell them a few sarongs I had left, they would not buy them because they were afraid of getting HIV/Aids."

In Bakan district, the villagers have to contend with the stresses and strains of poverty: income from agricultural production is very low due to poor technological facilities and skills, small landholdings, and an over-supply of labour. In each village at least 10% to 20% of the population migrate and seek employment. Poverty, migration and social inequality are the main factors driving the spread of the virus.

However, a local NGO, Ponluer Komar (PK), supported by Concern Worldwide, has set up a livelihoods project to help people living with HIV/Aids. Sreymom has become involved and is now a member of a PK-supported chicken-raising group. Money she earns from selling her chickens pays for her transport to receive regular treatment for "opportunistic infections" at the district referral hospital and helps to send her children to school. She is supported in home gardening activities, growing potatoes and vegetables on a small piece of land around her house. These are the main sources of food for her family. Recently PK has agreed to help her construct a well which will provide a water source for vegetable growing.

While Sreymom is benefiting from PK's activities, she is helping the project as well. She has now taken on the role of "village focal person", responsible for promoting HIV/Aids awareness throughout the village by sharing her personal experience through house visits. She is also working in nearby villages as well. Currently, there is another HIV/Aids-affected family in her village and she is helping them through counselling and referring them for services. She has combined her own experience with training from PK to carry out her responsibilities.

"I was sick in bed when I first met PK," she says. "Now, I have hope for my life and my family. I realise that I am important not only for my children but for my community".

FIGHTING STIGMA: INDIA

When Vivian George, 31, tested positive for HIV in 2003, he weighed just 33kgs and cared only for his next fix. A heroin user for several years, he had heard that sharing needles was a risk but the friends he injected with insisted that they share.

A local policeman came to know he was positive and told everyone living in his neighbourhood in Bubaneswar, the state capital of Orissa. Tea shops refused to serve Vivian unless he brought his own cup; a roadside food stall would no longer give him breakfast unless he brought his own plate; people he once considered to be friends kept a distance. "I became very depressed," Vivian says. "I wrote a suicide note three times and tied a rope around my neck. But I always passed out with drugs before I could act upon it."

Needing a blood transfusion, Vivian was admitted to the state capital hospital. He mustered the courage to quietly whisper into a doctor's ear that he was positive and wanted to be referred for care and treatment. The doctor suddenly took two steps back from his bed, walked away and sent a nurse over to tell Vivian he had to leave the hospital immediately. "I told them I'd have to wait for my sister to collect me. I couldn't stand, let alone walk," he says. But within minutes two ward boys picked him up and threw him on to the front steps of the hospital.

His sister contacted members of Mother Teresa's Mission of Charity who organised for Vivian to have a bed in its hospital in Calcutta - an eight-hour train journey away. He stayed in the mission hospital for 18 months.

He returned to Bubaneswar last October and since January this year, has been trained and begun paid work as a peer counsellor for the Indian Network for People Living with HIV/Aids (INP+). When someone tests positive in his district, he goes to the centre to counsel and support them. "I tell them about my past and my present. I tell them not to worry, that there's many people like us; there's treatment, and even without medicine you can live if you look after yourself."

As ART is not available in Orissa, Vivian also accompanies people on their journey to Calcutta to get it. "I've earned their respect," he says. "That gives me great satisfaction."


Source: Raekha Prasad http://www.guardian.co.uk/concernworldwide/story/0,,1841221,00.html