Syamala is from Kotala; a village 20 km from Tirupati town. She is 30 years old. She married Venkatesh who was a carpenter by profession. One year after the marriage Syamala delivered a child. Though she was not ready for a baby; her husband made the decision for her. When the child was a year old, her husband disappeared leaving the wife and child. Though very frightened and confused at first, she gathered her courage and started earning money by stitching together leaves (many hotels serve food in these stitched leaves which are used in place of dinner plates). After five months, her husband reappeared. He had no word of explanation or any thing to say to her. Syamala became pregnant again. Now she was earning some money but steadily; she had even managed to save some money. But her husband never contributed a penny towards the household expenses. Whatever little he earned from doing odd jobs, he used it for his pleasures and for his upkeep. He lived with her for about three years though he was not in any way concerned about running the family. He disappeared again.

This time again after a few months he reappeared. He was a sick man; coughing all the time. He would catch fever everyday. Syamala put her heart and soul into nursing him with the hope that it might make some impression on him and he would mend for the better. She took care of him. She incurred debts to meet his escalating medical costs. She even applied for a loan of Rs. 35,000 under a government scheme, under which individual artisans are provided with money to invest in tools of their trade. As he became sick, she sold the tools one by one to meet the rising medical costs. After some months of this selfless service, she became sick and tired of looking after an utterly thankless man who could not think of anyone else except himself.

One of WINS staff met her and Syamala tried to explain her husband’s sickness. They invited her for a meeting where in they discussed a lot about positive living.

Syamala realized that her husband might be carrying virus as he was frequenting sex workers. She did not dare to ask him. She was afraid that she could also succumb to the virus. She met a lot of other women in the meeting who where also facing the same situation. She gathered herself some strength and felt that she was not alone and that she can extend kindness to her husband. He was the same person. He was rude and cruel. His anger never reduced. Syamala house’s roof was made of tins which developed cracks due to wear and tear. On one rainy day, water flooded into the house and they lost whatever little they had.

Syamala returned home to see that nothing was left as assets. She was terribly upset and made her elder son drop from school and now he works to support his family. The rest of the two children are in school.

She now recalls with confidence that with the support of WINS the two children can finish the education while the elder son gets some guidance for life.

This family is hopeful as the elder son who has taken the responsibility of running the family while the mother is able to cook and supplement the earning. This alteration in life has been possible with the emotional and material support they receive from WINS.

Suneetha’s husband is a flower vendor. She fell in love with him and married him. After one year she gave birth to a female child. It was his second marriage. His first wife died with some unknown disease. He doesn’t know whether it was AIDS. But people suspect that she died of AIDS. Soon Suneetha became scared of it as neighbors advised her that she should be away from her husband. So she asked him not to visit her.

Suneetha’s husband left and during this time he had multiple sex partners. He returned after 2 years, and lived a happy life for another 4 years. After which, he would develop fevers very often. He consulted the SVRR Government Hospital doctors. He could not recover and was referred to the STD OP where he tested positive. Doctors advised Suneetha to go for HIV test. She tested positive. Soon after, Suneetha’s husband developed AIDS and died.

She contacts WINS Staff whenever she feels there is some problem. WINS Staff counseled her and told her that contracting HIV does not lead to immediate death and people who contracted HIV would live at least eight to twelve years without developing AIDS. She was advised that there is no need to be afraid of minor illnesses which are common irrespective of her positive status. Also, Suneetha is constantly advised by the WINS counsellors that she must be courageous and eat well and maintain good health as far as possible.

Suneetha continues to contact WINS whenever she feels the need to talk to someone. She has a daughter aged 10 years. She also continues to maintain confidentiality about her positive status. WINS cooperates with her in maintaining it.

Aruna, 30 years, mother of two children used to live with her husband and mother-in- law in the village Pedda Harijanwada. She has no idea about her neighbours, or the dynamics of her village. She managed to do all the housework, while her mother-in-law laboured in the farm. Aruna had just enough to feed the children two square meals a day. She was always hoping that her husband will earn an income someday which would allow her to meet children’s needs. Years passed by and nothing changed. Whenever Aruna tried to discuss the need for an income, she and her husband would end up in a quarrel.

The discussions often ended up with her husband yelling at her asking for dowry. There were instances wherein he would ask her to go out, get work and earn money in order to run the house. Subsequently, he became alcoholic and there were frequent episodes of violent physical and verbal abuse. Aruna learnt to put up with the violence although she has a fair understanding of domestic violence by attending WINS’ IKYA sessions. She made sure that her children attended pre-school.

Aruna was also regular to capacity building meetings. In one of the meetings, when she heard about the facility for Domestic violence victims, she started narrating her owes. “I did not get the confidence to talk about my husband’s bad behavior either in the beginning or at the end of monthly meetings, though I heard many women share their life issues, to day I want to talk about the ill treatment of my husband, my fear in not revealing is because he might commit suicide, out of shame, if he learns that I am sharing this in women’s meetings. She even hesitated when her peers (IKYA members) suggested that they will counsel him. she disliked the idea of counseling as she might land up in more trouble, as he is good except that he does not fulfill the role of a “provider”

Few days later IKYA members met Pakala Mandal Judge. He was talking to women about their well-being, she took the opportunity to stand up and speak and asked whether he can provide some source of income for women- say tailoring centre, etc., he responded positively and directed WINS staff to take her to the ONE STOP CENTRE- Domestic Violence cell where she would get all kinds of support under one roof. Aruna is all set to earn a living for herself and become economically independent.

Uday is a young and well-known electrician in his area. He had a lot of friends and is a much sought-after person. He married Parameswari, who was the only daughter and had a brother.The marriage was performed with much pomp and show.

Soon they were blessed with a son. At this point, while Parameswari was staying with her parents, Uday developed contacts with other women and developed STDs. He ignored the symptoms. When his friends advised him to go to a doctor, he resorted to herbal medicine given by a quack, because of the shame attached to disclosing his activities to the doctor. His wife returned to him, and they continued to live together once again. They had a second son.But even at this time, Uday continued to have symptoms of STD. The symptoms would disappear and appear intermittently and one of his peers advised him once again to consult an allopathic doctor.

The allopathic doctor told him to go for a blood test. Not knowing the purpose of the test,Uday did as advised and brought back the result to the doctor. He was informed that he had AIDS and would live only for a short while. The doctor also told him to get his wife and children tested. Both Parameswari and her younger son tested positive. Her elder son tested negative. The Doctor asked them to bring Rs. 20,000/- for medicines which Uday thought would cure him. He somehow managed to raise the money and gave it to the Doctor who gave him some medicines. After a month, when things did not improve, the Doctor asked for another installment of money for different medicines. Uday now demanded dowry money from his in-laws to give it to the Doctor. The harassment continued till it was decided that a house would be sold and its proceeds diverted for medicines.

Uday also visited WINS’ office in a full-blown AIDS situation. After counseling he expressed his will to continue to live. But the disease had grown to an advanced stage by then. Some of the peers of WINS admitted Uday at the Government Hospital. He stayed there for three days before he succumbed to the disease. His death saved the house from being sold.

Till his death neither Uday nor the doctors informed Parameswari that he was HIV positive,on the grounds that she was an illiterate. She continued to serve him even as he was bed-ridden. His mother also was living with them. After the death of Uday, the entire colony came to know of the cause of his death. Only he had a TV in the entire colony, and everyday someone would sit and watch TV and also eat in their house. After his death, the colony boycotted the family and stopped coming to their house.Now Parameswari had the burden of earning for a livelihood. She tried to get jobs as a maidservant in some places, but in vain. While she was trying her best for employment, WINS suggested certain options for eking a livelihood. She did not have physical strength and she was also emotionally drained out after having nursed her husband and spent traumatic moments with him during his last days. She did not wish to work in the WINS clinic, as she had no strength to meet more sick people. Frequent suggestions about nutrition and food intake helped her recoup her strength. Her brother helped her by giving her some grain every month so that the family could somehow subsist. She also rents a room in her house for which she gets Rs. 100/- a month.

At this juncture her second son who had tested positive, started falling sick. He was not gaining weight and he had an enlarged stomach. He even had problems digesting the food he consumed. Unable to help the child, she started coming to the WINS clinic and brought her son along. Her son Rajasekar was provided with some crayons and paper at the clinic, and the child started playing there. He became slightly more cheerful. The child was brought by her mother to every forum meeting for PLHA on the 24 th of each month. All the PLHAs liked the child and started playing with him, pampering him and becoming close to him. Rajasekar also said he liked coming to the forum meeting as he could meet so many people, and he enjoyed that a lot.

Since the child started getting medical complications, he was referred to a pediatrician. The Doctor in the pediatric ward admitted the child in the hospital and a surgeon was called for.The surgeon was not communicating to the parents and was insisting that they visit him in his clinic later in the evening. He did not know that the child was HIV+. Parameswari knew that the Doctor was asking for money to perform the surgery, and so she asked WINS staff toaccompany her. When WINS staff visited the doctor, and during the discussions Parameswari disclosed to the doctor that she had lost her husband to AIDS. Immediately the doctor insisted that she and the child also should be tested, and he blatantly asked them not to bring the child to the clinic anymore. He discharged them without giving anything in writing.

WINS had to intervene to find reasons why the doctor was not rendering service nor explaining any reasons for asking the patients to get discharged. When asked he said that the Govt. doctors did not have exposure to treating HIV afflicted persons as very few came.Already very few children get admitted in Govt. hospital for surgery, and he has never come across a HIV+ child in such a situation. He feared that if the child should die in the hospital and others came to know of it, they would stop coming to the Govt. hospital. He also said that even if he agreed for the surgery, his team members would refuse, and he cannot perform the job alone. He also said the child may die due to lack of immunity, especially in the post-operation period, but it would misconstrued as the inefficiency / negligence of the doctors. So he said the child should now be referred to an AIDS specialist who can put him on anti Retroviral Therapy (ART). WINS staff said at this point that the patient’s family can ill-afford even a doctor’s fee leave alone money for ART. Getting an employment for Rs. 300/- per month itself was a hard task for Parameswari. The doctor also suggested that NGOs can give free ART, which is still far-fetched in the services rendered by NGOs. The heated arguments between the doctor and WINS’ staff made Parameswari feel the stigma and discrimination related to the disease for the first time, and she withdrew further into herself. Finally WINS requested the doctor to make out a letter referring the case to a super-specialty hospital. A case could have been fought against the doctor, but for the lack of documentary evidence, and the condition of the child was critical and needed immediate attention.

WINS then encouraged Parameswari and took her along with the child to CMC, Vellore where WINS had linkage with the doctors. Accordingly the doctor at CMC Vellore was approached and was very kind while examining the child. After a thorough examination, he advised a course of treatment. The child was admitted and kept under observation and direct care of a specialist. The child responded well to the treatment. The doctor announced that there was no need for any surgery, and the problem can be taken care of through medicines.The doctor also confirmed his availability for the child at any time, and in case of any emergency.

Currently the child has recovered and continues to play. But the lessons learnt are very many.How HIV as a disease can cause havoc in a familial situation both physical and emotional, the insensitivity of the doctors and people who wish to take advantage of the situation, the stigma and discrimination that makes neighbors and friends boycott them and the pressure to go for a test with neither consent nor counseling. In the first place the communication between husband and wife had completely broken as the husband could have avoided infecting his wife had he spoken to her about his status. Only after his death did she come to know of the cause as well as the fact that he was infected even before their marriage. The consequences were devastating for her as she had neither physical nor emotional support. She was so dependent on her husband that she could not imagine an independent existence.

WINS’ support to her and her child made her realize that she had a friend and a guide to take her and her child through the rest of their lives. Her elder son, who had tested negative also get educational support from WINS. Her brother takes care of the elder child, and she has to stay and look after the younger child. She now misses her elder child, as she is unable to bewith him. The younger child also wants to see the brother, but the others in the family do not allow them to mix. But now, Parameswari has learnt to live without the support of her neighbors. She has learnt to live in a positive manner, and is willing to take care of herself and her infected child. She is a living example to others on home-based care for sero-positive persons. Hope is reinforced in her life and is an example to emulate for the rest of the People Living with HIV/AIDS (PLHA).

Suhasini’s older brother had settled down in a decent job in a well known temple town and he requested all the family members to come and live with him as he was earning well and was in a position to run and manage the family. Suhasini’s Father was a daily laborer. Suhasini by then was in her eighth grade. She was a good student and teachers advised her to study well so that she could get a government job.

In the new town, the Suhasini’s family lived in a slum which was very different from the village where they used to live. This settlement colony had people from different backgrounds. They were not very warm people. Each one of them had different occupations and they were busy engaged in their own work. Suhasini joined school.Every day, she was followed by a man called Punith who was a cook in a sweetmeat stall which was close to Suhasini’s house. Suhasini was told by her acquaintances that he was a responsible guy and that he is a reliable person. One day he took me to his house and introduced me to his mother and younger brother. I liked them all. But back home,Suhasini’s brother became furious that she had gone to Punith’s house without his knowledge. He beat Suhasini and forced her to put an end to school. A devastated Suhasini made plans to escape from home with Punith.

Subsequently, Suhasini and Punith got married. When Suhasini became pregnant, she visited a counselor at Government Maternity hospital, who disclosed her about her HIV Positive status. Suhasini’s husband took her to his mother and spoke to her about the HIV status. Her decision was clear. She asked the couple to leave the house. She never bothered to know what, why and how of the disease. She told the young couple that Sheha’s another son to be married off and she cannot afford to loose him.

Suhasini’s husband died soon, as he was deeply distressed and depressed. But with a baby in her arms, Suhasini had to start working as there was no one to support her. Suhasini says, ‘I was fortunate to know WINS positive people’s forum meetings and met many women like me. Widows, destitute and carrying HIV. I was naturally drawn into the group. They all spoke how their families are unable to understand HIV and its effect on humans. This support group meeting helped me to talk to my mother in law, who had some of my husband’s possessions. He had told me to collect it from his mother. He knew that I may not be able to earn or save to buy these household goods such as cooking gas, cupboard etc. It was not easy to get it from my in-laws. I tried three times and never succeeded.

”With support from WINS staff, Suhasini went to a women friendly police station where her mother-in-law was summoned and she agreed to handover Suhasini’s share of property. With great content, Suhasini recollects, ‘I thought it was a miracle. But it was true that I was able to get my share of my husband’s goods and property. I now have it with me and I show it to my son that it is his father’s belongings. All of this was possible because of the support I received from WINS.

WINS met Subramanyam when he was a two year old toddler. His father was a tractor driver and mother worked as a domestic help in a local residential colony. Subramanyam was a lean, cranky child. He had a huge tummy. There were fluids oozing from his eyes and ears with severe infection. It was heart wrenching to see the toddler weep most of his waking hours.

WINS’ staff took Subrahmanyam for multiple medical consultations. He got cured of the infections with the help of treatment. WINS’ staff also counselled the boy’s family about the need for nutritious diet. The family now eats healthy and are happy with Subramanyam’s progress. It’s leaves such a joyous feeling to see little Subramanyam greet us with a smile whenever we visit the family!

Rani’s mother is a member of HIV positive forum for the past six years. Both Rani’s mother and father are HIV positive. Rani has never seen her father being kind to her mother. Her mother was treated as a maid servant by the father and paternal grandmother. Rani’s mother had to do a lot of work for long hours as a result she became very weak.

One day my Rani’s maternal uncle visited them. He could not bear the sight of Rani’s mother’s subservient position in the family. He advised her that she need not be ill-treated resulting in her deranged health. There was a big fight in the family. Rani’s father was stubborn and was firm in saying that her mother’s position will not change till her death. This upset Rani’s uncle and he appealed to her sister that she can walkout of marriage as she was not respected any longer.

From then on, Rani and her mother started living in Tirupati at their uncle’s place. Rani’s mother joined WINS’ Positive People’s Forum. She got a small loan advance to continue her traditional work of making shoes and slippers along with her brother.During some meetings wherein children were allowed, Rani expressed her interest to join school. However, Rani’s mother was very reluctant to send her to school. She felt that Rani’s positive HIV status will never be accepted and securing an admission in a school will mean going through unnecessary hurdles.

WINS staff stressed that all the children irrespective of their health can and should go to school. One day Rani’s mother managed to meet a teacher in a primary school. She explained to the teacher that she and her child were HIV positive. The teacher promptly said she cannot allow Rani to sit alongside rest of the children. This was informed to WINS Staff and they approached the Principal of the school who was extremely kind. Following which, Rani’s mother was informed to meet the Principal to discuss the admission particulars.

The Principal was kind enough to make sure that Rani would sit in the classroom along with all the other children. A joyful Rani recollects, “I was so happy and all of them were quite friendly, I can never forget my first experience in my school. My mother was able to believe that there were kind hearted persons like my principal and class teacher who hardly show any discrimination against me or any other children like me.”

Rani concludes, “Attending the WINS’ Positive People meetings, I came to know that if I am not well, or if I am hurt or somebody hurts me I should report to my teacher and principal and they take complete care of me. I am leading a normal, joyful life,unlike before!”

WINS Staff saw a young boy of 11 years, sitting alone in the train, when they were traveling to WINS office at Tirupati. The boy looked very sad, and was standing near the door of the compartment. When enquired he informed that his name was Madhu. WINS staff were surprised as there were no elders around him. lowly and softly theboy said he was going to Tirupati. Then they asked with whom he is living in Tirupati? “I have none in Tirupati”, he said. “Did you eat anything?” they enquired kindly. He said “I have not eaten even last night”, he mumbled. They gave some fruits which they had with them. When the train started moving, they asked him which is his native place and found he was from Kurnool. “Why are you traveling alone” was their next question.

Then they took the pains to explain how children can be trafficked for begging, organ transplant, bonded labour and for servitude. Little later they asked him whether he did not wish to stay with his parents. Upon assuring that he doesn’t have to be scared, he was at ease and narrated his tale.

“I lost my mother five years back, I have four elder brothers. Out of them three got married and live in their own house. My father also remarried recently. None of the elders count me as one of their family members. My third brother is working and gives the money to our father. If I refuse to go along with him, my father beats me and never feeds me, and I ran away from home. At the Tenali railway station, a group of street boys sent me to a street child home called Bala Tejassu. Since, I could not make any friends there, I left the place to find some friends and work and now I am in this train.” 

WINS staff explained to him that he will not be given any jobs, as he is still young.And even if anyone employs children, they will have to undergo punishment. While this conversation with the boy was going on there were college students who came near and said the ticket examiner in the train beat him hard as he had traveled without a train ticket. When asked whether it was true the boy immediately broke down. Little later, he said he had studied up to fifth standard. WINS Staff informed him that “If you are going to roam around you will be caught by Police and branded as thief”. 

The boy was given an idea that he can be enrolled in a residential school, where he can have friendly environment and the elders will be kind to him. “Only if you agree to go to school, we can put you in a school” the staff told him. At this point, the college students also pitched in to say that please take the boy and do something for him. Ticket Collector had hit him so bad that if you allow him to continue to wander,he will become a vagabond. The boy’s opinion was sought again about going to school. 

Madhu came to WINS office and was present during a meeting. The Project Manager spoke to him at length. He felt comfortable in WINS’ office. The staff were sympathetic towards the boy. 

First the Kodur police station was informed, as they have a system to record missing children. Police officer asked for details and then he was prepared to send him to the Bridge school (A Non formal friendly residential school). Madhu was told he will be given good food, good clothes to wear, good teachers to teach and they will not be imposing in nature, and he can concentrate on studies. Madhu was thrilled. 

WINS staff went to the institution to see him after a week and he was well and happy. He happily showed the new dresses he has got, and also said he liked the food that is served to him. Teachers were met, they were also happy about him.They have promised Madhu to take him to his village when he wants to visit and he need not flee from hostel and he seems to trust his word. Now, WINS’ staff get to see Madhu as a happy child.

WINS first met Salma living with her mother in a small hut. They did not have food to eat in their house and Salma and her mother were severely affected by skin diseases which had taken a toll on their self-image. Very soon WINS offered the necessary medical and nutritional support to the mother and child. Our field staff have also arranged delivery of grocery, milk and eggs to their home and guided them with the medication. Gradually, they got cured of the acute skin diseases and started feeling better.

After sometime, when Salma wanted to attend a pre-school, the local school teacher denied her an admission. WINS staff visited the school to have a conversation with the teacher. After a detailed discussion with the teacher, he was finally convinced to admit Salma in the school. WINS offered stationery essentials like slate, books, colour pencils and so on to Salma. Her joy knew no bounds!

With this new found joy in their lives, Salma’s mother who was in a mentally depressed state expressed her interest to live a healthy life to take care of her daughter. WINS’ health experts assisted Salma’s mother in preparing healthy and nutritious meals. Very soon Salma’s body weight increased from 10.5Kgs to 12Kgs. Subsequently, Salma’s mother-in-law agreed to offer support to the mother and child. Constant communication reassured the family that HIV does not spread by eating or living under the same roof.

Gangadhar is lives in a village called Suryanagar, Anantapur district. He lost his mother eleven months back. His father was not very responsible man. He had married soon after the birth of Gangadhar’s elder sister. He did not even attend his wife’s funeral. Maternal grandparents alone were taking care of the children. But luckily the elder daughter (Gangadhar’s) sister is fifteen years old and she brought up her siblings. Soon she was married off and none was there to tend these young ones. Carers are so old that they are unable to give support to the children. They are just not in a position to take up household chores due to their ripe old age. Old grandparent(father) is an alcoholic and has taken up drinking very dearly as none of their relatives visit them for fear of contracting HIV. There is a lot of discrimination that is hurled on the child due to the loss of social acceptance. The child knows his status and was quite depressed.

It is at this juncture, WINS intervened and tried to address the issues. Gangadhar wouldn’t take showers and wouldn’t get his haircut done. He wouldn’t cut his nails.He had running nose. WINS team soon educated the carers about the effectiveness of home based care. Mosquitoes nets were provided to them. Nutritious food, way of preserving nutrients were all discussed to the elders in the family. Menus were prescribed considering the locally available food stuff. Nutritious supplement such as egg, and milk were provided for the child.

WINS team also introduced Educational support. The elders in the family were motivated to send the children to creche. They were told that in case of refusal in admission to children WINS will step in. They realized that the child should be in school. As a follow up measure when the staff visited the school, they were surprised to find out that the child was not in school. Immediately they rushed home and realized that the teacher was beating the child for not doing homework (meaning the child has to do written work at home) and it made the child abstain from school. The teacher was given a strong warning that beating will amount to child abuse and that the teacher must not beat the child at any cost. They realized their mistake. Every time little things that matter for the child in terms of hygiene, nutrition, self-care,medication, nursing care were reemphasized. This has helped caregivers and the child hope for a better tomorrow.

The child has been able to play in WINS drop in center and has gained happiness and pleasure. Gangadhar now looks cheerful and has learnt new games such as carom board and ring ball. The change of mood in the child is so perceptible that it has to be seen to believe it.

Caregiver’s training is also very useful as it helps them clarify doubts such as cough,frequent fevers, motion personal hygiene, genital hygiene etc. WINS team was also quite instrumental in addressing the stigma and discrimination issues.