The Challenge of K.

What needs to Happen if We REALLY want to tackle HIV in India

If we are Really serious about changing the course of the HIV epidemic as well as improving care and support of HIV positive people in India, then we must learn the lessons embedded in K’s world-view. K’s experience and beliefs are typical of a large cross-section of the millions of Indians who are HIV positive. For K and those like her, nothing that has been done so far in the fight against HIV has made the smallest impact in her world.

(This story is true. Names and locations have been changed for confidentiality.)

K came to Prithvi on a recommendation from Maharashtra Network of Positive People, a growing network of people who are HIV positive. The government is putting great effort into promoting, financing and supporting networks of positive people as part of their HIV programmes, so existing networks are actively recruiting members. Her home is in a rural area near one of Maharashtra’s mid-sized cities. She attended an organizational meeting of MNP+ there and deeply impressed one of our staff members who was present with her bravery and determination.

She came to participate in a training programme and was quick to share her story with us. Like most HIV positive women, she believes she was infected by her husband. At 16 she was pressured into an arranged marriage with her mother’s brother’s son. The brother was a local official and the family was relatively well-off – financially an excellent marriage prospect for her. She states that the boy was sick when she met him and she wondered what was wrong, and even broached the subject of an HIV test (This may have been an elaboration of the tale in hind-sight). Her family was horrified at the suggestion and brushed it off. Her fiancee’s family kept changing the date and place of the intended wedding, and insisted finally that her family not send out any invitations. The marriage was a temple marriage that was not registered. She states that her family went along with these strange manipulations and never questioned them. They were anxious to get her married off.

Shortly after marriage the young man showed increasing signs of weakness and illness and, after 4 years, he died in the hospital. There were no children. The hospital staff told her he died of AIDS and told her to have an HIV test. This was the first time she knew what was wrong, although she claims she had suspected that he was suffering from HIV and that his family had known all along. Again, these observations may well be developed after the fact, to enhance her tale to an audience she knew was sympathetic.

She tested HIV positive. She had no counselling and no education about what that meant. Within 24 hours she had lost a husband and found out that she, herself had a deadly and mysterious disease. She was a simple village woman, facing the loss of everything she depended on. Her in-laws immediately began to manipulate her, suggesting she go home to her family “ for a vacation.” She refused, determined to stay with them. Eventually they forced her out and she returned to her family, who did not want her back. Over the next months she claims the family stopped her from cooking, or eating with the family and gradually forced her out of the house, claiming she endangered everyone by her presence. Finally she built a small and flimsy hut on her father’s land and stayed there. She did back-breaking field work for occasional and minimal meals. Her husband’s family made repeated attempts to deny the marriage had occurred, and to deny her a widow’s share in the property. She was very proud of standing up to them.

During this time – 4 years – she had few symptoms of positivity – some weakness and weight-loss, and reoccurring bladder infections. HIV positive had no real meaning for her – it was a name for her exclusion.

She presented herself as proud and was obviously very angry about her treatment at the hands of her family on both sides. Her spirit and spunk won people over to her immediately. This is the kind of woman Prithvi and like-minded NGOs are fighting for. The organization opened its heart and its doors to her. She was given temporary employment with the belief that a fresh start was what she needed. She, herself, claimed she never wanted to go back to her village again, and that she wanted to stop the same thing that happened to her from happening to others.

Gradually, a broader picture emerged. K. was able to both read and write. Yet, it quickly became clear that people skills were lacking, as well as general skills like cooking and cleaning, running a household. She had led a very limited life until now. Neither at home nor at her in-laws had she been taught how to function effectively, even in a rural environment. Her world was very, very narrow and totally oriented to basic survival. The village beliefs were her beliefs. Her story, seen through her eyes, was biased to present her as a complete victim of circumstances.

She quickly regressed into a state of servility and victim-hood. She was telling the whole new neighborhood that she was HIV positive, completely ignorant of any consequences. She expected constant attention, and was deliberately seeking negative attention. Her attention span was short and her behaviour in meetings and training disruptive. She had found an identity, a kind of fame, from her condition. There were flashes of perception, followed by a deep closing down. She was afraid to go out, and had to be repeatedly invited to eat. Talks about nutrition and about choice made no impression.

Then she began to engage in sneaky behaviour, lies and distortions. She had contacts in the city and wanted to go off and spend time with them. Yet her naivety made her an ideal target for exploitation.

Things came to crisis when she became ill with a bladder infection. She was taken to a good doctor, who prescribed and carefully explained what she needed to do. The person who was providing a home was very patient, and also explained some basic physiology and how to keep herself clean. Village beliefs, however, took over. She believed that she might infect others, especially as she was using a toilet inside the house – something she had never done before in her life. To her, even the dirt of a slum dwelling was preferable. She began to agitate to leave.

About this time, leaks in her story also began to appear. Her mother, who she had claimed was very cruel and responsible for her exclusion from the house, took great pains to contact her. She was fascinated by a “love marriage” drama occurring nearby– where the bride and groom had married against family consent - and was increasingly speaking of remarriage. Small clues began to indicate that she had been having at least one affair while living away from her parents’ authority, and that her behaviour was also a trigger for their apparently cruel treatment of her. She would not take the medicines prescribed, but wanted to see the village homeopathic quack.

She was given choices and decisions were spelled out for her, but the concept was so alien that she could not grasp what was offered. Finally she boarded the bus to return to her old life, which was known and secure, if arduous. Within a few years she will probably follow her husband into death. She is NOT a candidate for ARTs and never will be, for she can neither afford them, nor comply with the treatment regimen nor take care of herself properly.

This is the situation in which HIV is spreading through India. It is fueled by secret sexual promiscuity, by people who have no idea about their bodies, or basic hygiene, nutrition, health care. People who have never made an independent decision about their own lives. From what and where to eat, where to go to school, who to marry, how to earn a living, all decisions are made at the family level and by circumstances. For the common Indian, only the self-destructive choices are left to them - the dark arena of sexual affairs and prostitution, alcohol and gambling. Choice involves lying and sneaking and hiding.

This is the fertile soil of the epidemic.

Medicines in this arena are basically useless as a primary intervention. The rural people use the diluted remnants of indigenous practices: herbalists who grind up aspirin and cortisone for every ailment; daiis (midwives) who were trained by their mothers to deal with all “female complaints” and pregnancy; homeopaths and ayurvedic practitioners who have no formal training, but half a dozen standard formulas they dispense; chemists, whose advice is taken long before the doctor’s. The majority of Indians never have contact with even a minimally trained medical doctor. If they do, it is as an emergency in a hospital setting, often too late to make any difference. Hospitals are places to die.

Patients expect an instant cure from whomever they consult. They are prey to medical exploitation at every level. However, they also make it impossible for a doctor to engage in best practices. The doctor knows that whatever is prescribed will not be taken properly; instructions will not be followed. The patient will move to the practitioner who promises the quick cure. Long-term treatment is neither understood nor tolerated. The patient does not expect to take any responsibility for the improvement of their condition.

K. is the perfect symbol of this bind. At least four years after infection, she still has no major symptoms of HIV infection, let alone AIDS. It is suspected that the Indian strain of HIV – HIV/A virus – may be less virulent than its western cousin, C type. It is hard for K. to believe in it, except that she saw her husband die coughing his lungs out, weakened and skeletal, in great fear and pain. She believes in the village health care practitioners – they are the only ones she knows. She wants medicines with instant results – psychological if not physical. The promise of a cure is magic; a partnership that involves changing HER habits and beliefs is completely alien.

Being HIV positive first took on meaning with her husband’s death. But, it took on personal meaning when she came in contact with the HIV support group, MNP+. Unfortunately, the meaning she took from her brief contact with them was that she was a poor victim, who deserved help, understanding, sympathy – more dependence. The movement of people living with HIV has great potential but the groups are suffering from a lack of goals, process, vision and experience. Once they have recruited people they do not know what to do with them. The groups end up engaging in spirited in-fighting – taking out their anger on each other – or die after a short time from lack of activities.

The leaders of these organizations have made great capital from the many and real abuses that have been practiced against them. Speaking internationally, they have been lionized and exploited by international bodies which have heard their stories. They have taken on a deeply held victim-hood that is transferred to all levels of the organization, reinforced by the passivity and lack of choices in society as a whole. They want to be taken care of. But the Indian government is completely incapable of taking care of the more than 5 million people conservatively estimated to be HIV positive

Putting together meaningful support groups encompassing as wide a range of people as are HIV positive in India is, in itself an enormous challenge. This is a society with deep divisions of caste and race. The fear of HIV is not strong enough to overcome these, let alone the stigma and discrimination that attach to all who acknowledge or are suspected of being HIV positive.

For many like K, the organizations become a place where they learn to feel sorry for themselves, and to bank on sympathy instead of skills. The organizations do not transmit the essential information to individuals who must manage a long-term and chronic conditions, and make life-changing decisions about how to live positive – not surprising, since the task is, indeed, monumental.

• If HIV positive people are to survive, they must learn to make choices and to manage their disease, and to face head-on the social issues that the disease presents.

• This will only happen when there is a strong peer-based experiential system of education that makes sense within the rural belief systems.

• Medical intervention is ineffective without educated patients who will follow treatment regimens, as well as basic nutrition, hygiene and sanitation concepts.

• Introducing Anti-retroviral therapy in such a milieu is highly irresponsible until primary concerns have been addressed. For someone like K, ARTs are completely incompatible with her beliefs and her lifestyle. Yet, she would be an easy victim of any doctor, chemist, or quack who told her they represent a cure. She is unable to comply with a complicated and long-term treatment regimen without a good deal more knowledge and self awareness.

• For K and many like her – both men and women – getting into a new relationship is the primary concern. For women, it is salvation from a life outside society; for men, it is a validation of their normality. The prevention of spread of an infection they do not really believe they have is not apart of their beliefs. This issue must be recognized and addressed.

• Primary intervention MUST be Counselling, including learning to make choices and long-term management of a chronic condition. India at present has only a handful of trained and effective counsellors. Most “counsellors” have a 2-5 day course of basic information which they dispense from an advice giving stance. Real counselling is empowerment and the development of choice-making and self-awareness skills. Information is Useless unless the recipient understands how to apply it in their life.

• The stories of HIV positive people are horrific and the discrimination and exploitation are extreme; yet, the story has many layers of truth, and those who are positive have their own part in creating the dramas. To perpetuate victim-hood does not help HIV positive people to undertake the terrible challenges that face them.

How do we reach someone like K? Especially when there are millions like her, and the numbers are expanding by the minute? She must be reached at 3 levels: Empowerment, Understanding, and Choice-making. Empowerment to take charge of her life, to whatever extent she is capable. Understanding of a long-term, chronic condition and how it does and does not affect those around her. Choice-making to establish a life and earn a living and build responsible relationships. These are long-term changes in her belief system and her handling of the world around her. They are neither simple nor a quick cure. They go against her cultural inheritence.

Today, rural India stands in the shadow of the spectre of Africa’s deserted and AIDs-stricken villages. The empowerment of rural communities – by the communities themselves, and with the support of government, business and common citizens at all levels and from all walks of life is the only effective way forward in this epidemic. It is more important than medical intervention, more important than government educational materials, more important than politics. The very life of the rural villages is at stake.

– 10 May 2005