The first time I heard Agui Daimei give a talk on sensitization towards HIV/AIDS in 2016, I was moved to tears. Agui Daimei is HIV-Positive and she is committed to helping those who are inflicted and affected by the virus. She is the co-founder of Meghalaya State Network of Positive People (MSNP+) and is currently the supervisor of the network. Her husband is the President of the network. Half and One decided to interview her about the activism that she undertakes towards creating a more aware society and an improved lifestyle for PLHIV/AIDS (People living with HIV/AIDS).
How did you discover that you were HIV positive?
I discovered that I was HIV positive in the year 2006, in the month of October. It was ten years into my marriage when my husband was first diagnosed. That was the first time he confessed to me that he was an Intravenous Drug User (IDU) during his college days. But he also received two blood transfusions in the past so that could have been the cause too, no one knows. I was shocked at first, for I had no knowledge of his IDU days. I did not want to be tested because I thought to myself, “If I have it too, I can’t really change anything by getting myself tested”, which was borne out of my lack of understanding at first. But I finally went and to my apprehension, I tested positive. My CD4 (immunity level) was very low at first, (just)at 12. Then it went even lower, almost to 2. I was almost classified as having AIDS. But gradually, with ART( Anti-Retroviral Therapy) my CD4 level increased and is now 300+, which is a healthy number.
How did you react to that?
Initially, I thought to myself, “Do I deserve this? Why me?” That was what everyone also asked. And I also thought to myself, “There are others who involve in high risk behaviour but I didn’t do that “. I felt as though the world around me was crushed, dreams shattered, fear gripped me, the embarrassment and shame that I felt was overwhelming. I was ashamed of how the world would see me .Everything just became so dark .For months, I was tormented with depressive thoughts like, “When will I start getting really sick?”, “What if I die?”,“When will I die?”, “Who will take care of my three children?”.
I was haunted by this night and day. Because I had little to no knowledge about the treatment, I did not know anyone who suffered the same plight as my husband and I did. We felt so alone and isolated. The thought of disclosing it to others, even to the closest of friends and family, was so dreadful. I felt as though I was sentenced to die for no apparent reason, and death could come within a day or a month, or months, no one knew. Such self-stigma grieves, paralyzes and cripples the strength and will power of many of us.
How did the people around you react to this?
I did not have the courage to speak to my parents about it at first. I felt sorry for them because they were old and my mother is illiterate, so I assumed that it would badly affect them both. The thought of heavily burdening them with this was heart wrenching for me. I told my nephew first, and we cried together. By the time I actually did tell them, I had gained enough courage and knowledge to be able to reassure them that it was treatable. My family were very supportive. Not once did they say, “Why are you coming out with this? Don’t you feel embarrassed and ashamed for your sisters or brothers or children?”
This is another reason why PLHIV (Persons Living with HIV) are not open about their status. Even though they might have accepted the truth for themselves, yet the thought of the shame and humiliation that the family would face is so unbearable that it binds them to living in secrecy and self-stigmatization.
When did you start to recover from this, to get to where you are now?
The self-pity and shame dissipated after a few months and I started on my journey towards recovery. As a family, we decided to be positive. We thought, “Now that we are here, how can we work through this together?”. I also have a wonderful and kind church, which helps us and prays for us. That’s where I gather strength to see it my mission and calling to help others. That way, I even forget that I am HIV positive sometimes (laughs).
I have observed how those who share their status with others seem to be healthier and happier than those who hide in shame and fear.
Have you and your husband or your children faced stigma and discrimination in any form?
Well not through direct confrontation, but by way of gossip, rumours and scornful glances, people think that we do not recognize their body language, but it becomes so apparent .
There was one time when my husband was in an accident and he received minor injuries. So we took him to the hospital. Yet even though we had arrived quite early, other patients were treated first and we, last .So that delayed treatment also hurt our sentiments. Then there was a time when I was evicted from my house at Lachumiere because the house owner came to know about our status .We had only moved there recently but within a month she asked us to vacate the house within fifteen days. My children also face minor discriminatory remarks from their school mates, but these are all challenges that we must overcome. There are so many other times when members of our network face humiliation. One such case was when a fellow member was at a hospital where nurses were overheard whispering to the ward boy, telling him not to go near her, standing far off and giving contemptuous glances. This is the kind of treatment meted out by the staff who are expected to be compassionate. There was also the case of a pregnant HIV lady who was about to deliver her baby. When she was admitted to hospital (I will not name this hospital), she was given a bed but was denied a bed cover. And although hospitals like Civil Hospital and Ganesh Das Hospital are doing a good job when it comes to treatment of HIV infected persons, yet some private hospitals unnecessarily keep HIV patients in isolated wards. While there is a mandate stating that, keeping them at the general ward should not be a problem as long as their condition is not critical. Universal precaution is needed, but not to the point of discrimination. They already have enough to worry about but such discrimination makes them more ill by instilling in them a negative attitude towards themselves. These are the attitudes which kill the will power and hope of many (PLHIV) and cause others not to be open about their status or even get themselves tested .So when they do not come out to get themselves tested, they do not receive the treatment and thus leading them to become at a higher risk of infecting others, resulting in a wider spread of HIV and AIDS. Many are in a state of depression, anxiety and have suicidal tendencies because they fear being rejected by society and being alone. They cannot deal with the pain by themselves either. Sadly, they resort to suicide. But no one likes to look at discrimination and stigma as a killer, they put all the blame on the virus and the very acts that get them infected. What they do not understand is that there is a chance that anyone can get it, like me.
I am not really afraid of being discriminated and stigmatized because; the very reason why we are vocal about our status is so that people become aware about it and that will help curb the spread of the virus. I always encourage my children to look beyond such things and they too support us always, at every awareness programme, world AIDS day, candle-light programmes. They are always with my husband and me.
When did you decide that you wanted to help others?
Well, it was when Madam Hasina Kharbih, who was then the team leader of Impulse NGO, who encouraged me to be a part of her project that helped persons with HIV/AIDS in 2007. Through my exposure trip across India, I learnt how HIV-Positive people like me helped others who were vulnerable and needed help. So that led me to get involved with few people living with HIV and we formed a network called the ‘Meghalaya State Network of Positive People Plus (MSNP+)’ in the state. I was aware that I had an alternative choice. I could have just taken my ART, stayed quiet and led a normal life. But after a lot of pondering and asking myself and God, “Is this my calling, to help others just like me?”, I had an epiphany that this was what I was here for. So in 2008 I publically opened up about my status for the first time, during a World AIDS day programme and shared my testimony. I am happy with my decision to spread awareness, to give hope to the hopeless and to empower those who are HIV positive. I am free from self stigma and free from fear of what people will say.I have been on ART for 12 years now and am happy and healthy in mind and body.
Do you think that the awareness programmes against the spread of HIV/AIDS and the sensitization programmes for persons living with HIV/AIDS are effective enough in the state?
Both the National AIDS Control Organisation (NACO) and Meghalaya AIDS Control Society (MACS) are doing a great job with activities such as youth programmes, Red Ribbon Club, Integrated Counselling and Testing Centre (ICTC) programmes. But then, when it comes to the general public’s perception, HIV is still seen as a dreaded disease, but HIV is a “Condition” of the Immune system compromised. That means people can ‘live’ with it, with medicines to monitor it. People infected with HIV die mostly because of other opportunistic infections, like TB (co- infection) ,if treatment is not necessitated. If awareness programmes are not done properly, it may sometimes create a fear-psychosis in the minds of people and deter those who are at high risk and carriers of the virus from undergoing tests and treatment instead of reassuring and motivating them that it is not the end. Awareness programmes should stress that HIV/ AIDS is not really directed to ‘Bad people who do sinful acts’, but the lack of awareness itself. So changing the attitude and mentality of the people is still a great challenge when it comes to conducting more effective awareness drives.
Are children at the school level being sensitized about HIV/AIDS?
Yes, programmes are being conducted in some schools, for classes 9 and 10, but not below that. The academic syllabus also includes it, yet it depends on the teacher, if they are able to teach the students along with sensitizing them towards the HIV infected person, or if they convey only half (truths) tinted with prejudice towards it. All teachers should be sensitized about AIDS before they teach it in schools.
Have you witnessed any changes in the society when it comes to treatment of HIV infected persons?
Well there are signs, but majority are still indifferent and silent about it. Be it in church settings or faith based institutions, at home, the topic of HIV/AIDS is still taboo .In order to get rid of this, awareness drives need to be an ongoing programme and not a ‘one-time’ thing. Collaboration with other civil societies and government departments do help a lot. In the past, along with MACS, we have been able to conduct programmes for teachers, nurses and even with the headmen in villages and at legislative forums. But we need more of this.
What are the common misconceptions that the general public have about HIV/AIDS?
Most people think that those who have HIV are “bad” people, that they must have done something wrong to contract it. Or if I visit or sit close to people, they might get infected. Recently, one of our members reported that some residents from her locality gossiped about her, telling others not to go to her house. And then people started to avoid her and look at her in a demeaning way.
Recently, a sweeping statement was made by Chief Executive (Member) of the Khasi Hills Autonomous District Council ( KHADC), H.S.Shylla , which stated that truck drivers and migrant workers were the “main carriers” of the HIV/AIDS virus into our community, which evoked strong oppositions. How do you react to this statement?
Honestly, I am happy that H.S Shylla made that statement. He is wrong to blame one group for the spread of (HIV/AIDS). It presents a misconception to the general public, which no one was in the position to speak about other than Mr. Shylla . So now, this is a good opportunity for us to sensitize society about HIV/AIDS because now it has gained the public’s attention .Because of his ignorance, we are able spread the correct message to the entire state. We believe that the state, including him, is now more educated by our reply towards his statement. He may not have had bad intentions, but it sounded discriminatory.
What are some government interventions that have been meted out to HIV positive people?
The government has minimum programmes for Persons Living with HIV. Most of the programmes are handled by NACO which in turn delegates the tasks to MACS at the state level. Even though we have health departments like NRHM (National Rural Health Mission), programmes on HIV are only conducted by MACS. Also, there is no proper delegation of activities in the health sector. I believe that all departments should be responsible because HIV does not only affect the physical state but also the mental, financial, social and emotional state of a person. The Directorate of Social Welfare of the State has helped us set up a “Short Stay Home” which is a need- based project to help provide food and lodging for HIV positive people who come to receive treatment.But things like the transport card freely given to PLHIV by the transport department is applicable only with Syndicate Bus and MTC, so it’s usage is minimum. Aid is also given by Food and Civil supply as it recently issued AAY cards for thirteen families. The Integrated Child Protection Scheme (ICPS) was also granted to some of our children, and Mrs. Sabina Warjri , former Mrs. UNIVERSE INDIA -2017, supported nutritional packages for fifteen Children Living with HIV AIDS (CLHIV). But besides this, there are no other collaborations with other departments, also there is no provision for nutritional & educational support for (PLHIV). (PLHIV) get free ART (drugs) ,counselling, free testing and also OI treatment but patients from rural areas cannot even afford to come every month for their drugs which is available only at two centers in the state – Shillong Civil Hospital and NEIGRIHMS (North East Indira Gandhi Regional Institute of Health and Medical (Sciences) ,which leads to many cases of Loss to Follow (LFU). The staff at the ARTC are not adequate enough to cater to the ever increasing cases of new infections every month and they cannot afford to give quality time to the existing patients because they have to cater to so many patients.
India HIV/ AIDS Alliance supported VIHAAN- CSC (Care Support Centre)project also provides them with the care and support needed in the form of access to essential services, linkages to social protection schemes, legal aid, reduce stigma and discrimination, etc. But there should be more schemes related to skill training for individuals, ICPS for children ,(nutritional & educational) support along with Pension Schemes for (PLHIV) without the tedious process of paperwork because many of them are from rural areas with income less than INR 3000 per month, and do not have the required documents ,which makes access to the various schemes difficult. Many are also daily wage labourers, single parents, unemployed and some are women whose husbands have abandoned them.
Can ART improve the longevity of a person living with HIV/AIDS?
For PLHIV, yes, although in its last stage with the emergence of other co- infections, it becomes a little more complicated. With regular ART, even though it may have some side effects, a person with HIV can live a normal life and even prevent infection of others. But I believe and pray that a cure will be discovered.
Do you have a message for the general public regarding sensitization towards HIV/AIDS?
People living with HIV may feel anxious or sad, They may feel rejected and think nobody really cares or understands. Stigma is a huge issue, therefore when people with HIV or those who are at high risk feel accepted and are able to tell their own stories; when families are able to support them; when people are empathetic towards their pain, they will have the courage to get themselves tested, come out with their status and receive necessary treatment. That would further reduce the spread of the virus and also lead to a healthier society. I also want to say to the public that HIV is manageable and, like diabetes, people can live with it. It should not be labeled as a ‘Dreaded disease’. I feel that no one can (claim) that they will never contract HIV. Yet precautionary measures should always be followed, such as abstaining from pre-marital sex and from drug use and also being extra cautious while receiving blood transfusions from any hospital. HIV/AIDS is manageable by taking ART( anti retroviral therapy). People living with HIV can live normal and healthy lives. Everyone is positive until they test negative. The surest way to be safe is to get yourself tested at any ICTC and know your status.
Author: Karen Lyndem
Karen Lyndem is a Staff Writer. She has a B.A in English and a Masters of Social Work from St. Edmund’s College, Shillong.