Human Question: Interview with Chandrika, AIDS Activist, MILANA, Bangalore
Duration: 01:01:29; Aspect Ratio: 1.366:1; Hue: 0.409; Saturation: 0.331; Lightness: 0.359; Volume: 0.098; Cuts per Minute: 1.350; Words per Minute: 89.928
Summary: Tracing the story of the global struggle to make HIV/AIDS drugs more affordable and available, A Human Question raises key questions of whether private ownership of knowledge can be at the costs of human life?
Shot of Chandrika Close up…setting up camera equipment…small talk…inaudible..
access to medicine and arv
indian patent law
living with hiv in india
stigma and discrimination
Chandhrika shows her son's HIV MEDICATION.
(Q : What's in the bag?)
Medicines. This is for my son. It's called Efavirenz, and a monthly dose costs a thousand rupees. Then there's maivudine and zidovudine. BREAK
Talks about how the MEDICATION is taken.
(Q : What's in the bag?)
Medicines. This is called Rotacaps, for Vinod. He has to put the capsule in this and take it 3 times a day. It has to be cleaned twice a week, and then dried. It comes in sets of two, so that one can be used while the other is being cleaned. Now there's a new model, but he finds it very difficult to use this since he has to breathe in very deeply. With the old one, two short breaths are enough.
Even I'm not sure how to use this. You put the medicine in here, and then breathe deeply, but he can't do it easily. So the doctor's said that he should continue with the old one. He takes it thrice a day.
Check name of pills, type of meningitis
Discusses her MEDICATION further, why she takes certain pills.
Then there's this one called DSO. Both of us take it… (J : What's it for?)
It's for other opportunistic diseases. This is Efavirenz. This is Flukon. I take it on alternate days now, but I used to take it everyday earlier, when I had cryptococcal meningitis. I take it whenever I get severe headaches.
Sometimes he gets skin irritation, and this has to be applied with salt water.
applied with salt water
He gets very high fevers frequently. Every 15 days, 10 days, his temperature will shoot up to 104, 105 degrees. So I always keep these antibiotic tablets at home. This is mine – Duovir N.
These are his ARV's – zidovudine and lamivudine. The others are in my mother's house.
(J : All these are adult doses?)
Yes, all of them. (J : You have one tablet twice a day?) Yes, one in the morning and one at night
(J asks q in Tamil)
I found out about my infection in '98, and Vinod had a TB attack soon after. So I found out a bit about his medicines. Since his TB lasted until he was about one and a half, he got started on ARV's, and I found out about his three medicines. I started wondering what ARV's I would have to take if I was on treatment, so I asked to be trained. Then when I started working in Ashakiran, I found out about them. But now, my son knows even more than me about the medicines – which ones to take, when to take…00:07:00
Talks about HIV CARE MANAGEMENT and TREATMENT MANAGEMENT for herself and her son.
hiv care management
Talks about her son becoming very sick with KIDNEY FAILURE and how she managed until she could not afford it anymore.
(J : When did you first find out?)
In '98. Both of us used to be perfectly normal. Then Vinod started getting loose motions. I admitted him to St. John's, and they diagnosed it to be kidney failure. It cost me three lakhs to keep him in hospital for three months. But when I couldn't afford it any longer, I brought him home. Then on my family doctor's suggestion, I tested for HIV. When we discovered that both of us were positive…he had already had a TB attack by then, so I started him on TB medicines. In '98 itself
Tells her story of what happened to her andher family when she found out she was HIV POSITIVE, and why her HUSBAND eventually COMMITTED SUICIDE.
(J : Did all three of you, including your husband, get tested?)
My husband got tested first. His mother knew about it, and then he told me about it too. Back then, Anand Laboratories was charging 3000 rupees for the test. We found out that Bowring Hospital did the test for free, and so we went there. I was very reluctant, and told my husband that I couldn't possibly have it, and that he had just been lied to. But then we both tested positive. The counselor told me that I definitely had the infection, and that I could live for 3 more years, or even only for 3 more months. But my husband didn't tell his parents about me, since I was being looked after well. When Vinod was a year and a half old, we tested him, and discovered that he was positive too. My husband feared for us if he died early, and so he tried to get his property from his family. But they said, since you're the only one positive, we don't want to give it, you'll only throw it away. When he realised that he wouldn't get the property, he killed himself.
Talks about her husband's EXTRAMARITAL AFFAIR and him sending her a DIVORCE NOTICE.
Vinod found out about six months back.
(J : They didn't discuss it with you?)
They didn't say they'd never give it. When I asked them, they said that they would divide it eventually, but didn't want to give my husband just then as he drank too much. They said, we're taking care of you anyway. They used to pay all Vinod's expenses. They felt that it would be a waste to give it to him as only he had the infection. Finally, a month before his suicide, he even thought of divorcing me. He used to have an affair with a woman here. I knew about it from the beginning, but never asked him anything. I thought, it's your money, do what you want. I didn't have any awareness about this then, or else I'd have tried to do something.
He sent me a divorce notice, which just lay in the house for a month. Then my sister-in-law came to me and asked why I was tolerating all this. She told me to go speak to the other woman. When I went to here, she said, if you can't keep your husband, there's nothing I can do; I've been with him for a long time. My husband even tried to beat me up, so I just returned to home.
Unclear here whether she took the TB medicines and drinks, or her husband did.
Talks about the FAMILY CRISIS that happened after her husband had COMMITTED SUICIDE and how she was forced to sign over her PROPERTY after her husband's DEATH.
(J : Do they still help you?)
No, not now. The day he died…he used to own a separate site, for which he had the papers. When he died, his mother said that she wouldn't have anything to do with him, and sent them to find me. By the time I got there, he'd already died. He'd written about ten pages in a diary, which I gave to the doctor, along with his TB medicines and his drinks. After that I returned to the same room and slept. By the time I got to his house, he had already been dead for some time, and his body had gone cold. Everyone there told me to call my in-laws. My younger brother had arrived by then. He'd been told about the infection, but I didn't know that. I sent him to my in-laws' house, and they agreed to come. Everyone told me to take all the papers there, so that I'd at least get the site if I couldn't get a share of his property. My younger brother had returned by then, and I went with him. The body was being taken away. Then somebody told them that I didn't really care for my husband's death, and was only interested in the property. There was a big fight that night. They said that I was only there for the property, that he'd died because of me. They said that he'd got the disease from me, even though they didn't know then that I was infected. Another older relative had meanwhile been given the diary by the doctor. But by the time he got here, I'd been forced into signing on a blank sheet of paper. What could I do? I was only 20 years old, I didn't know anything. I just wanted him to be buried, since it had already been more than a day.
Talks about further FAMILY DISPUTES after her husband's SUICIDE.
The older relative then got there, and told all my in-laws that they were responsible for the suicide. For some days after that, they segregated me from the rest of the house, kept my clothes separate, since they thought that I could have TB as well. The doctor at the Seva Clinic told them that I wasn't positive, and that they should stop harassing me. It was a very big house, and I'd been given a separate room to myself. They made me wear a white sari, they did all that. After a fortnight, my mother came here with some people and fought for a share to the property. In some days she returned home, but my in-laws told me that I'd have to choose between them and my mother. Since they'd helped me for so long, I chose to stay with them.
My mother, my brothers-in-law then scolded me and finally disowned me, saying that I'd always only brought shame and dishonor to the family. I decided that I was better off with my in-laws and stayed there. They took good care of Vinod and me for a month. I used to go to CCF every month, and they said that since I wasn't infected, they would look after me. There were two other men who weren't married there, and nobody had had any children. So they had planned to get me married to one of them, in the hope that I would bear them children. I didn't know about this. I just went about my household work. They'd even told me that I didn't need to work outside. One day they all sat me down and said, we've come to a decision about you, and you have to obey us. The two men were sitting together, and they said that I had to choose one of them and get married to him.
Tells the story of being forced to choose one of the unmarried, young men to marry after she started living with her in-laws.
They said that they weren't going to allow me to get married anywhere else. I then had to tell them about my infection, and I did. I told them about Vinod too, and said that the doctor had only told them I was negative so that they would stop harassing me. I said I couldn't get married. They threw me out of the house that same night.
When they found out she was HIV INFECTED, they threw her out of the house.
Talks about where she went after she was kicked out, and how she managed her life, her son and illness.
(J : Property?)
Nothing. I'd signed that blank sheet…They used to look after me, so I thought…They threw me and Vinod out that very night. All my things were in that house. My younger brother Harish was then living in our old house. When I went to him he fought me too. He said, you didn't want to go back to your parents earlier, why are you here now? He said that I could live there, but I'd have to pay for myself. I started doing domestic work in three or four houses. After some time, my headaches got worse with all the stress. Vinod was already on ARV by then, and they'd told me that they weren't sure if he would live beyond 3 months. His CD4 count was only 72. Then, I had to cut this one tablet into ten equal pieces, according to his height and weight. My headaches got much worse with all the worrying, and I was told that I had cryptococcal meningitis. I was in Ashakiran for at least a month, and they said I was in a very bad state. There was a nurse there who was also positive (although I didn't know that then) who took very good care of me. I even asked Jyoti Madam when she came why this nurse liked me so much. I used to ask her if they thought I would survive. After I got better, Jyoti Madam told me that the doctor had told her I probably wouldn't survive, and they would have to find a place for the child.
positve health care provider
But she just told me that I would get better. When my brother had been to see me, someone in the beds beside mine had told him that I have AIDS. So when I was discharged and came back home, I found him gone. He knew even earlier, but I found out only when I spoke to Jyothi Madam. He knew in '98 itself. I didn't know what to do, because I felt that I wouldn't be able to work. But I still somehow managed to get some domestic work. Vinod recovered fully in six months, and he got healthier than me. I went to Samraksha and asked for some training. I told them I would be all right. By then, CCF was also shutting down. So they agreed to train me in St Martha's for six months. Vinod then had a malaria attack. The doctors said that I'd have to change his ARV's. Then the person who's paying for my medicines now, they said that the child should survive, and that they would pay for the second-tier medicines.
Talks about what happened after she recovered from a major illness and was discharged.
second tier medicines
Her son's reluctance to the take the HIV MEDICATION at first.
Vinod was very reluctant to take the medicines then. He had to take 15-16 tablets a day, and he found it very difficult. The doctor had to counsel him. He said that he wanted to go to school. BREAK
15 to 16 tablets
Even when I went to St Martha's, I was still working at a house. (J:What training?) A&M training. I thought that I might be able to get a job if was well-trained. By then CCD was also closing. Christy Abraham said that it wasn't possible to keep it going. I realised I would have to fend for myself. I then started working in Ashakiran, but in less than a month my CD4 level fell drastically to 95. I was told that I had to start ARV's. But I could barely afford Vinod's medicine, and that too didn't seem to be preventing his infections, so I said that I didn't want ARVs, and I would get back on Flukon. 3 people then offered to pay for my medicine – the doctor treating me, the person who's paying for Vinod's treatment now, and also another counselor. But I said that it was a lifelong treatment, and that prices of second-tier medicines could rise and they might not be able to pay in future. It wasn't like they had written a contract, so I insisted that I didn't want to take the medicines. Then Vinod's benefactor came to my house one day and asked me why I wasn't starting treatment. I'd seen many patients in Ashakiran who died as soon as they started the treatment. The doctor had told me that all of them had been bedridden even before the treatment, but I was still scared. Who would look after my child if I died? For three months they told me that I would definitely die if I had a relapse, but I still didn't take it.
Talks about her own reluctance to take ARV MEDICATION, despite having BENEFACTORS who were willing to pay for her TREATMENT.
a and m training
second tier medicines
My doctor then spoke to my younger brother, who came to see me. He asked me to start treatment too, since the doctors were so insistent. He said that he would look after my nutrition. And then I started ART. It's been almost two years now.
The DOCTOR speaks to her younger brother about HIV CARE AND TREATMENT.
hiv care and treatment
Discusses the SIDE EFFECTS OF HIV MEDICATION.
(J : Had they explained about the medicines?)
Yes, I knew that it's a lifelong treatment from the beginning. It had side-effects too : I vomited almost continuously for 3 months, I lost weight. And then I thought that I was gone too. They gave me a tablet which I took for three months, and then I got back to normal. Now even if I miss my pills for a day, I can get by. Not that I would not take it, but in case I don't.
side effects of hiv medication
Talks about the need for INCREASED HIV/AIDS AWARENESS and ACCESS TO TREATMENT.
(J : How old are you?) I'm 25, running on 26 right now.
(J : What do you feel about all this?) I just think that if I had this awareness then, maybe my husband would have still been alive. A lot of people have died just due to lack of awareness. These tablets are available for a thousand, or 800 rupees now. If only people had known about them, so many would have survived. If the Government had given out these medicines 4 years back, a lot of people would have lived at least for some more time.
access to treatment
increased hiv/aids awareness
Discusses HIV CARE MANAGEMENT for her son in terms of his MEDICATION.
(J asks in Tamil)
Yes, because the people at Bowring Hospital had just scared us. They'd said that Vinod wouldn't last for more than 3 months. Then someone in Bowring itself had said, don't listen to them, go to Seva Clinic. Now I don't go anywhere else. Even at 12 or 1 in the night, I can call them up and ask about medicines. Since I know the medicines, they tell me the dosage over the phone and I start administering it immediately.
(J : How much does on tablet cost?)
This one? This is now cheaper. It used to cost 1200 earlier. For 30 tablets. He's been taking this for almost three years now. Earlier, he used to take a two-combination, but since he got TB and his CD4 went down, he started this. If he can't take this, then he'll have to start the third-tier medicines, which costs about 10,000 rupees. So I wanted to check his CD4 level after he finished his TB medicines. It's been about six months since he stopped his TB medicine, so this month I'm going to get his CD4 level tested.
cd4 level test
hiv care management
third tier medicines
Talks about how she manages the COST OF TREATMENT on her SALARY.
(J : How much would it cost for all the medicines and the nutrition, in one month?) For one person, it would take at least four thousand rupees per month. (J : How much do you earn in a month?) 1500. It's only increased now. (J : You have support for the medicines?) Since my medicines are paid for, I can get good nutrition. My mother grows many things back home, and she sends it to me. I save most of it for my son, since he's already had TB attacks twice. Even my younger brother looks after him – if I give him an egg in the morning, he'll give him one at night.
cost of treatment
medicines and nutrition
Talks about how lucky she feels despite all the difficulties.
(J : Do you think you're lucky?) Yes, I think I'm lucky. (J : What about the other people who come to Milana?) They don't have enough food to eat regularly. Some can't even manage three square meals. There are many who could afford it earlier, but have now lost everything after paying for themedicines.
affordable hiv medication
Need for FAMILY SUPPORT and GOOD NUTRITION even with ACCESS TO FREE DRUGS.
(J : So they need support despite the government giving free drugs?) Yes, absolutely. They need support from home, nutritional support, and only then can they live a healthy life.
access to free drugs
She talks about how she has managed DISCLOSING HIV POSITIVE STATUS for herself and her son within the SCHOOL SYSTEM.
disclosing hiv positive status
hiv positive children
(Q in Tamil) When I was getting him admitted into kindergarten, I told the Principal about his infection and asked if he could be taken in. He said that the infection couldn't be spread by touch, and so he was all right with him being admitted. But he told me that I would have to tell Vinod's teacher about his condition. I told the LKG teacher. He didn't fall sick all that year, but in UKG he got a combined attack of malaria and typhoid, and he had to be in a care centre for a month. I'd already told the UKG teacher when he got to that grade, and she'd said that I should just tell other people that he was diabetic, since he looked healthy enough. He's very careful too, and never lets anyone else touch his blood. So she told me not to worry about him. He's a brilliant student, and always tops his class. So when he had to be in the care centre and miss his midterm exams, they said that it was all right and he'd only have to write his final exams. Now he's in the first standard and has four teachersrs. Two of them know about him, and two others have been told he's diabetic. But when I did the school aids advocacy program, since they knew that I was a parent of one of the schoolchildren, they thought that I might be positive and asked the principal. He's told them that nobody in the school is positive. I had given them my address at the program, and had said that a school in HAL had taken in an infected child. The principal then came home with his wife, and asked me if i wanted to tell the other teachers. I said that I needed some more time. But he doesn't face any problems at school. Even when he missed one month of school, the teachers got some other students to write notes for him.
school aids advocacy program
He does not take any MEDICATION at school.
(J : Medicines during schooltime?) There aren't any medicines during schooltime. He takes some after breakfast. He's become used to it, so even when I don't tell him, he takes it by himself. He's never taken anything in the afternoons. But if he has to take the next level, then he'll have to take some pills. 2 hours before eating, 2 hours after. So that's why we still haven't done it.
Discusses how she manages her HOUSING EXPENSES
(J : Only you and your son stay here?) Mostly only the both of us. My younger brother comes occasionally. (J : Nobody here asks?) Nobody does. The owner knows I work in this field (J : How much rent?) It was 1000 earlier, now 1200. (J : How do you manage?) I only pay the rent. My younger brother pays for everything else – rations, nutrition, the house expenses. But he hasn't been paying for a couple of months now.
What to do if the PATENT AMENDMENT is passed.
(J : Q in tamil about patent amendment and generics) Before it comes in, we'll have to protest and stop it. Rather than just keeping quiet because someone is paying for me.
Talks about the RISING PRICES OF MEDICINES, the need for BETTER NUTRITION, and LAW.
There's going to be a new law. If they discover a new use of the medicine, then they can extend their rights over it. And apparently medicine prices will go up. (J: So what could happen?) Prices of all medicines could go up. Some feel that this is only for HIV medicines, but that's wrong. It applies to normal people too. (J – Q in Tamil). No, normal people aren't doing anything. And positive people are just happy that the government is giving it free of cost. Only some others who are getting it from outside are saying that we should protest. But it's better if we should raise our voices before the law is enacted, the way we are arguing for nutrition right now. Right now we're not getting nutrition, but we're getting medicine. Since Milana is giving nutrition, some people are managing to keep their health. Similarly, it would be good if we can protest before the patent amendment comes into force.
free of cost drugs
rising prices of medicines
(Q in Tamil) Already people have so many notions about this disease. That it is spread by just talking or sitting next to an infected person, that it is always spread by sexual contact. So positive people are always afraid that they might get thrown out of the house if they tell people about their condition, they're scared about whether they will be accepted in society. The fear is very prevalent. Of the positive people I know, only one in ten has been allowed to continue living in their houses after admitting to being positive. When this itself doesn't go…It's still better than the situation in, say, 1997, but it should change even further. But I personally feel that for that to happen, positive people should themselves come out. No change is possible without that. You need two hands to clap.
Talks about the MISINFORMATION that exists about HIV/AIDS and HIV TRANSMISSION, and the need for INCREASED AWARENESS.
accepted in society
(Q in Tamil) 4, 5 years. BREAK
It cost 900 rupees earlier, but it's come down in the last four months. (Q in Tamil) They've never tried to contact me. They've told a couple of people that I'm not really positive, and I had just lied, but that the child could be infected. When Vinod was admitted, I sent my younger brother to call them. And they had said, we have no relation with her, we don't care if she dies. Even if they don't give me the property, I want to challenge them…but I don't have any documents relating to the ownership of the property. I shouldn't have signed on that blank sheet…
Talks about her FAMILY and PROPERTY DISPUTES.
ownership of property
Talks about MILANA'S ROLE in such FAMILY DISPUTES.
(Q in Tamil) For Milana to intervene, the affected person first has to approach them and narrate her problems, and she should want some kind of intervention. For me personally, I'm definitely not going to give me the property.
Talks about ACCESSING MEDICINES in the FAMILY context and the difficulties thereof.
(Q : Are medicines being give out properly?) Not all families are getting this, only a few are being given. And they aren'tbeing given out equally. They just give out a little bit. (Q : Then where do they go?) If the medicines were being given properly, then they would at least thing, alright, since I've already got the disease, let me at least try to take the medicines since I can get them. But now they just feel, anyway I'm going to die sometime, so there's no point in fighting with them to get the medicines.
administering drugs properly
Shows a picture of her son when he was two months old.
(Q : When was this picture taken?) Two months after Vinod was born. (Q: How many years back?) Two, four, six. Seven years back. (Q: When you were 20?) Nineteen. (Q in Tamil) I was in college, in Hassan. He was a contractor, so he was working there with an engineer. He was staying in my older sister's house. I met him there, and in six months…
Talks about the circumstances around her MARRIAGE, and what she would have done differently if she had more AWARENESS.
(Q in Tamil). No. 1st year BA, discontinued. (Q in Tamil) No, we got married by ourselves. My mother and my older sister were opposed to it. (Q: Why?) He was a Malayali, and we were Gowdas. So we came here and his family did everything. (J : His family was here?) Yes, in Bangalore. (Q in Tamil) I didn't know anything about all this then. If I had, then I would have done a lot of things differently. I was raised very well in my house, since I was the youngest girl. I used to get whatever I wanted. They wanted me to do a TCH, but I wanted to do a BA and then a B.Ed. I wanted to become a high school teacher.
high school teacher
Talks about how she lost touch with her FAMILY and stopped PURSUING FURTHER STUDIES.
(Q in Tamil) It didn't arise in that situation. Even I didn't really have any problems then. Since I was looked after well in my husband's house, I thought that it was better to just live there than try to study further. And after Vinod was born, they really pampered me. I didn't even have to get a glass of water for myself. I thought, I'm living here even better than at my mother's, so I lost all touch with her.
pursuing further studies
Talks about deciding to COMMIT SUICIDE when they first found out they were HIV POSITIVE and then what happened after her son was also found to be HIV POSITIVE.
(Q in Tamil) At first, we decided to commit suicide together. But we hadn't tested Vinod yet since he was less than a year old. So we decided that we would get him tested first. Since my in-laws were taking good care of me, we decided that we wouldn't tell them about my being infected, and just continue that way until we got Vinod tested. For some time, there was a blame game, each of us blamed the other for infecting them. Then the doctor asked him about where he'd been, who he'd been with. Then he admitted that it was his fault. We were all right for some time, but when we found that Vinod was positive, we were devastated. He started drinking heavily.
Talks about the HIGH RATE OF SUICIDES also among her husband's friends after he COMMITTED SUICIDE.
(J : Did he understand at first what it was all about?) Yes, he did. He used to go to Kodaikanal with his friends. His family was quite well-off. (J ; Any contact with his friends?) Two of his very close friends committed suicide a week after he died. Their wives live elsewhere now, in Tamil Nadu and Andhra Pradesh. I only used to speak on the phone with them. They didn't know that I was positive. (J : They were positive?) No, they just started drinking after hearing of his suicide, and then killed themselves. (J : Are suicide rates high?) It's come down now, but around '97-'98, until 2000, it was very high. ARV's were very expensive then, and most people couldn't afford them. And when you're told about it, they don't say HIV, they say AIDS. So there's more of a shock. You start wondering whether you'll be accepted at home.
high rate of suicides
Shows pictures and talks about the various people.
(J : What photographs are those?) These? This one is my son's first birthday. Her husband died, and hers too. And mine too. This is Vinod. (Points out) Her husband died, and hers too. Now she's in Tamil Nadu, and she's in Hyderabad. This is Vinod in Ashakiran, when he started ARV's. This is of Harish's factory. (J : What work did your husband do?) He was a building contractor. (J : In Bangalore?) Yes, in Bangalore. This is a nutrition program held when I was in CCF. He was very small then. This is my school, when I was in the tenth standard. This is my cousin, that's me, and that's my brother. (J: So this is the brother who's looking after your?) No, this one doesn't know. That's a different brother.
This is the three of us. We've00:53:48 been friends from the beginning, when we found out that we were positive. This is a program that we did at an Old Age Home. This is from my sister's wedding. This is from Ashakiran. I became better mainly due to her. She took very good care of me. We used to learn to make paper bags, here. This is from when I was in a self-help group, Jyothi Madam had come there to tell us about organising ourselves. This is my husband.
old age home
self help group
More pictures, and talks about her friends and husband.
(J : What's his name?) Avinash. This is Vinod. This is also from the Old Age program. This was the doctor who treated me.
old age program
Vinod's BIRTH WEIGHT and HIV TESTING for NEW BORNE BABIES.
(J : How old was Vinod then?) Only two months. (J : Normal delivery?) Normal delivery, in the HAL hospital. He weighed 4 kg 800 gm then. (J : No tests then?) No, we didn't test him then. (J : Only now they've started testing pregnant women?) Yes, only now. From last year. This is our office staff. She's Rajeshwari. You've seen her.
new borne babies
This is my younger sister. This is my house, my mother's house. (J : Your mother doesn't know?) No, she doesn't know. This was a pooja at the temple. This was when our whole family went to Sabarimalai. (J : Does she know you converted to Christianity?) Yes, she knows. She doesn't mind it. This is my sister's husband. He knows now, but since he hasn't studied much, he doesn't really know what it means. I told him not to tell anybody about it, so my sister hasn't found out. He's only studied till the 4th or 5th standard. This is all from my village. This is my grandfather. If I'm not getting any support from my mother, it's because of him.
Talks about her side of the family, and the kind of FAMILY SUPPORT she has from them, through photographs.
convertion to christianity
(Q in Tamil) I don't think my mother will find out. (J : And your older sister?) There's a younger sister who's not married yet, so…When she gets married, then I'll tell her. (J : But they know about your work?) Yes, everybody knows that. This is at my mother's, when Vinod had just started ART.
Points out various FAMILY MEMBERS from PHOTOGRAPHS.
Talks about who in her FAMILY knows about her HIV POSITIVE STATUS.
hiv positive status
This is my sister and her husband. This is my younger brother. This is teacher sister's house. This is my grandfather. Everyone's supposed to take his blessings every time they meet him. He's very old, about 100-110. This is my whole family. (J : big family?) Yes. No, my mother's not in this one. This is Vinod. He asked me to take a picture of him with this flower. This is my mother's house. This is…My younger brother used to have a shop. This is from a legal literacy program.
legal literacy program
Says she is against all forms of MANDATORY HIV TESTING, and that people should just use precaution.
(J : What do you feel about the suggestion for a new HIV law?) No, I don't think there should be one. There shouldn't be a separate law just for us. We're human beings too, so making a different law for us is wrong.
(Q in Tamil abt HIV testing before marriage) Even if they could test, there's still a window period. And sometimes when they find out after marriage, they still stay united. If compulsory testing happens, so many families could be disrupted. Instead of that, people should just be careful.
hiv testing before marriage
mandatory hiv testing
new hiv law
Talks about what she learned at the LEGAL LITERACY WORKSHOP.
(J : What did you learn in the legal literacy workshop?) That the laws for HIV people are the same as for anyone else. They also explained a bit about general laws. They were from Delhi and spoke in Hindi, so we couldn't understand too well. For 4 days
laws for hiv people
legal literacy workshop
Talks about her personal NETWORK of POSITIVE FRIENDS all over SOUTH INDIA.
(J : do you have contact with positive people from other states?) Me? I have friends in all these places – Tamil Nadu, Andhra, Kerala, Goa. (J : because you go for advocacy to all these places?) Yes, because of that. I had made a presentation too. (J: On what?) On what the law should be like. Lots of people had different opinions. I said that there should just be a few extra provisions, but there shouldn't be a different law. For example, a positive person can't have insurance. But if they want to, then they should be able to.
(J : did your husband have any insurance from his employers?) No, nothing. (J : Private?) Yes, he worked as an independent contractor. All his profits were his own. (J : Do you want to add anything?) Anything else…now they're bringing in the patent amendment, we should all unite and make sure that it doesn't happen. They should know about what its impact will be on positive people. Many NGO's are working on this issue, but separately. They should all unite. Some people say that people go to Milana because they get nutrition there. Some people don't even have enough to eat. At least if they get that much, then it would be a great help.
Talks about what FURTHER ACTION needs to take place in terms of LAWS and HEALTH.
It would be good if everyone gets together and divides the work. Then it would be much faster.
division of work