Special Feature
The Fear Of The Unknown
Monica stood at the edge of her own dining area behind the wooden door and stretched out her plate for food; just like an outcast. Her mother-in-law who was serving food to the other family members shovelled a few morsels of food on her plate and thrust it her way as if even touching her plate would infect her with the terrible virus.
Monica Das, 26, is HIV positive. The deep vermillion powder on her forehead says Monica is a married Hindu woman. She lives with her in-laws in Keraniganj, a mofassil town on the outskirts of the metropolitan Dhaka.
“My in-laws are orthodox and me being HIV positive is like a double jeopardy for me. They would not care to understand that I was infected by their son, my husband,” she opens up pouring out her frustrations. “I cannot put to words the amount of discrimination and prejudice I had to face because of my health condition. My infant child was taken away from me; I was not allowed to do household chores such as cutting fish or other tasks. I was barred from sitting with my family. My life was nothing less than hell,” she continues to relate.
“Luckily for us, a peer counsellor from Ashar Alo Society, an organisation of PLHIV (People Living with HIV) came to our town and my husband got treatment from them and when he started improving, his family's attitude towards me slowly started to change. Now we are living in our own separate house with our daughter who is in Class III. She is HIV negative and we are doing well with my husband's small income as an ironsmith,” Monica recounts her life story from the last five years in a nutshell. She adds that if it was not for Ashar Alo she would still be forced to live a leper's life in the dark. Monica Das is a general member of AsharProdeep, the first HIV positive organisation for women in Bangladesh.
“Ashar Alo Society is an organisation of PLHIV (People Living with HIV), working for those infected with and affected by HIV and AIDS, however few of us HIV positive women felt the need to have a different platform for women only, because there are many women related problems that could not be freely discussed in front of men. Thus Ashar Prodeep, (AP) the first HIV positive organisation for women in Bangladesh was formed,” says Neela Akter, Peer Counsellor and Secretary of AsharProdeep.
“Ashar Prodeep started its journey from 2008 as a women's network led by a group of HIV positive women who came together to share information, experiences and enlist support from each other. It has formed a general committee with 35 members and an executive committee of 7 members. AsharProdeep was registered on January 10, 2010 under the Women and Children Affairs Bureau, Bangladesh,” Akter says.
Ashar Prodeep seeks to create a stigma and violence – free society, to ensure treatment rights as well as establish basic rights for all PLHIV women and children in Bangladesh. “Increasing access to Antiretroviral Therapy (ART) treatment for PLHIV women to reduce HIV morbidity and mortality and make the support more effective through treatment education and empowerment of PLHIV women is the ongoing project of AsharProdeep, along with awareness building on treatment issue and empowerment of PLHIV women,” Akter explained their main purpose.
AP also conducts one to one peer counselling, family counselling, spouse counselling and treatment adherence counselling. As a PLHIV women's organisation, Ashar Prodeep is working for HIV infected and affected women and their children in Bangladesh. PLHIV women are still facing stigma, neglect and discrimination at different levels, their needs are being excluded from the development plans of different agencies due to the lack of awareness, limited knowledge on rights based issues, misconceptions about HIV and AIDS, low literacy rates and inappropriate advocacy skills.
Ashar Prodeep has been supported by UNICEF from 2012. “Our main focus is to help AP strengthen its organizational capacity in terms of logistics, chalking out guidelines or principles, help in policy development and provide support services for expansion to facilitate the most important part of their job which is counselling, treatment adherence by home advocacy,” says Dr M Ziya Uddin, HIV/AIDS Specialist, UNICEF Bangladesh.
“The distraught women do not know about HIV/AIDS and care treatment. They do not receive treatment due to the fear of stigma and discrimination, lack of knowledge and family and social support. They do not speak about their health problems with family members for the fear of being deprived of their husbands' properties. To raise their concerns and provide them with a platform AP started some initial level activities like counselling, training on ARV drug adherence, human rights, gender, networking visits, referral linkages etc.
“To strengthen AP's role as a new organisation, it is necessary to ensure good governance for which they need to develop human resoures and develop a financial policy to maintain transparency, develop personal policies and M&E manuals under this programme. AP will also have to organise different training programme and workshops for capacity building to develop their organisation so that they can establish themselves as an independent organisation and raise funds to work for the PLHIV women in Bangladesh,” feels Dr Ziya.
Neela Akter is a strong, confident woman. She is HIV positive but that leaves no trace of despair in her. Her strength comes from the fact that she has seen life at its cruellest and she has successfully turned the wheels of her fate and once again she begun to dream of a better future.
“My husband was an immigrant worker in Kuwait, I had one son and a shop of my own, I lived with my in-laws and things were going fine until January 2009 when my husband abruptly returned home sick. He did not tell me why he came back but I could see that he frequently became sick with fever, jaundice, diarrhoea. He said he had diabetes for which he was ill. We took him to the hospital but nothing was found wrong with him then finally we went to Suhrawardy where the doctors confirmed he had AIDS. I was nine months pregnant at that time with my daughter and my husband passed away shortly after being diagnosed. My brothers-in-law immediately asked me to get checked and when I tested positive they threw me out of my own house, took away my son, my shop and all my savings. It all happened almost simultaneously. I gave birth to my daughter and half an hour after her birth she was given medicines to protect her from being infected. The medicines continued until she was 18 months old and tested negative. My mother took me in and gave us shelter. I came to AP and found a job here. I got my son back. He is 18 years old now and I got him admitted to the Open University to finish his school finals. I have not looked back ever since,” Akter relates her story.
Dedicated as she is Akter's counselling has helped many distraught women like her. It is easy for her to understand their troubles because she has been in their shoes. The stories of Khairun Nahar of Jessore or Nahar Akter of Brahmanbaria or Mahmuda Akter of Mirzapore are all similar. Some got infected by their immigrant worker husbands and some got infected while receiving blood transfusions during delivery. Their stigma and discrimination, the sordid tales of their lives are all too common for PLHIV. Yet when they all sit together talking about their woes and problems they gather hope from each other to carry on with life. AsharProdeep gives these women the strength and confidence to know that being HIV positive is not the end; proper health care, regular medication and peer support can help them live relatively normal and respectable lives.
The writer is Editor, Star Lifestyle.
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