Communities Stories

Manipur: The Second Generation Worry of Living with the HIV

"It is not living differently, it is just unusual´ says seventeen year old Prakhriti Thaodem, a eleven grade student from West Imphal, the capital city of North East state Manipur. She lives with the HIV virus and has learnt to sustain it along in her life. She contracted the virus in her mother´s womb and now has learnt to live with it. ´This is normal for me as I lived on the medicines since my childhood´. ´I have lived with the virus all my life. I take my medicines every morning and night as food. All I want is not to be discriminated from other children".

Prakhriti is one amongst the group of several children of Manipur who happen to be the second generation kids either living with HIV or have parental history. Together they stand for each other acknowledging the difference in their lives than the many other children of the country andvouch to fight ´for a life beyond discrimination and hatred´.

Kids from different backgrounds gather at a two day sensitizing workshop and consultation on HIV /AIDS to pester their demand to the state government. They are asking for adequate legal rights against fellow citizens for discriminating and making life further difficult for them. Armed with a fifteen point resolution in hand, these children either living with the deadly virus or are born to people living with HIV (PLHIV) charter the agenda to launch a nationwide advocacy campaign that will address their health, stigma, education, nutrition, disclosure and succession plans.

"I am forty eight and have lived with the virus for most of my life. But now I have a wife and a daughter who are not affected by the virus. I am cautious and concerned and take that extra effort to ensure their safety," proudly explains L Deepak Singh, the president of the Manipur network of positive people. "I want to ensure that my daughter is not discriminated ever and she does not live with fear of being found out".

The children and their parents along with the peer groups joined hands to press the Manipur government for ensured legal protection and adequate redressal mechanism for disclosure of personal information and security. These children were mourning the death of Kiran Bala a fourteen year old registered child (RC) living with HIV with her grandparents. She had lost her parents to the deadly disease. Yet in want of adequate nutrition while being supplemented the Anti-Retroviral Treatment (ART), she lost the battle for life. Kiran from the Leitong area of Imphal West also lost her property rights to relatives and at her death bed was thrown out along with her grandparents from the local community a couple of months back. "This happened only because her status was made public, by relatives, doctors or who so ever was responsible." "Now that she is dead, her maternal grandparents who stood by her cannot even have legal claims on her inherited piece of land. It is a two generation loss for this family", explains Impuri Ngayawon, a volunteer working with International humanitarian organization World Vision, that works along with the state government in advocating rights of people living with HIV/ AIDS.

A similar story is that of Simaran Nesa, a fourteen year old daughter of Suraiya Begum, both mother daughter, duo living with HIV. The mother and child had contracted the deadly virus during Suraiya´s third pregnancy while undergoing blood transfusion for some accident. They are still taken care of very courageously by her teacher husband Md. Reyazuddin in Thoubal district of Manipur. "We are aware and we are concerned for our loved ones. We love each other and we care to follow the medication in our lives in a much dedicated manner", Suraiya says confidently. "You have to counsel others so that they learn to also live with people like us".

The North East States have registered many more number of HIV cases in comparison to other parts of the country in the last decade. According to National AIDS Control Organization status report a small state such as Manipur has more than with twenty five thousand registered people living with HIV. Their children either affected or not, have been living in constant fear of getting identified and discriminated. Together they call for a strict legal recourse to protect their status report and live life under social protection schemes of the central and state governments.

"This is a fear based stigma in the society. People are simply scared to contract the disease and so they discriminate and ostracize. But children living with the virus are equal citizens and have equal rights. They want their parents to be healthy and working. Also they want that their nutrition to be adequate so that they can live somewhat normally and sustain the ART treatment", explains Daisy David, the national advocacy officer of World Vision.

"We are counselling the positive people, but we need to counsel each one of us as a citizen so that they do not brand people. The anti retroviral therapy works well only when people have good nutrition and living conditions", elaborates Dr. R.K Rosie, the deputy director of Manipur Aids control society.

The resolution calls for relaxing the criteria for the PLHIV in applying for social protection schemes, doubling nutrition for all HIV infected children under the ICDS scheme, provision of ART pension scheme, uninterrupted supply of regular medicines and ART medicines in all ART centers, DOTS centers and Primary health centers along with the second line Art for all PLHIV who are resistant to first line.

Seventeen year old Sadanand fears for his father, a jawan with Assam Rifles. "Till the time his colleagues do not know his status he is acceptable. My father is on life saving drugs as Lamivudine and Elavirenz, even while protecting the nation. Two of my younger brothers are also positive. But if we can live as a family why can´t, others give us our space", "there is so little opportunity for us´.

Thoithoibi, five, a registered child and her mother Ebemcha Devi are locked in a legal battle over her husband´s property. Thoithoibi´s father´s family wants them dead so that they can take over the property located near the highway in Imphal. "All they want now is we die", says Ibemcha whose husband was diagnosed with AIDs in its last stage. But she has survived and is fighting the battle of life and property by controlling it through drugs provided by the State Aids Control Society.

"There has to be some law, to protect people like us. Here we fight the battle for life and increase life expectancy for my daughter, and on the other people would not want us near them". Ibemcha now sells detergent powder and soaps to run a livelihood.

Story of the couple Urmila and M Ibomcha is different. Their younger child Risham contracted the virus from them but their elder son is safe. Yet the fight begins at home from sibling rivalry to social acceptability to community bonding.

"The pain to live a life in isolation and discrimination for the second generation people is the cause for worry, both to the government and also to the advocates of PLHIV", accepts Deepak Singh, the president of Manipur network of Positive people. The ART centers are few in number and people like Urmila and Ibomcha travel three kilometers to get in their monthly dose of ART. Many times the medicines might not be available and then they have to keep a track to get in their quota of the life-saving drugs made available at the ART Centers for free on a monthly basis. Because of the vulnerability PLHIV contract several other diseases and usually doctors prescribe their status on prescriptions making their status known. "So the need of the hour is for greater acceptability and integration", adds Daisy David.

"The first generation was not that careful but the second generation living with HIV, or with family history are very sensitive. Girls and boys grow in fear of never being able to marry and lead a normal life. This is the time for neatly outlined laws to address people like us. There are more than twenty one lakh people in the nation living with HIV and more than 1.5 lakh children living with it. They cannot be termed a lost case", adds Deepak while handing the resolution paper to the principal secretary of the social welfare and tribal affairs department of Government of Manipur.

Posted on July 17, 2015


Rekha Calls for the “World We Want”

At a first glance Rekha seems to be just another young woman with special needs. But on the other note she is a twenty two year old with special powers. She has been on a wheel chair since she was two but today she stands tall with her “World We Want” campaign for special rights for children living with disabilities across the globe. She headed the campaign with her eleven member team of children that presented ‘Children’s Manifesto’ asking for equal opportunities and greater sensitivity towards people like her at the 68th United Nations General Assembly in New York in the first week of October. This is the first ever such a call asking for the attention of the indifferent World leaders towards an issue that has kept a section of the world population living in oblivion.

Rekha’s call is based on her own experiences. On her way to the United Nations General Assembly Rekha recalled all the hiccups of her growing up years as a disabled child. “Honestly I just felt I was differently abled”, but I know how difficult it was for my little sister who would carry me to school. Sometimes she fell ill too and I would have to miss school because I could not walk. The school dropped me because I needed help to go to the toilet or drink water”, she ruefully adds.

Rekha Kumari, the daughter of a watchman of Delhi is waiting for her class XI results now at the age of twenty two. Surviving on her monthly government stipend for children living with disabilities (CWD)she says “As if we did not exist. Despite having dropped out of school at eleven, I rejoined with more grit and determination. I got into a wheel chair but couldn’t drive toschool because the roads were not smooth for an easy drive. There were no toilets for people like me but I have decided to fight through”. “Unless I fight for the cause of people like me, I will always remain non- existent”, she explains.

As the National Convener for National Forum of Children with Disabilities (NFCD), the global movement of Children with Disabilities (CWDs), she is now bringing together children who are differently abled and a little not amongst the equals from across the world asking for adequate space and equal rights for them. Considered to be the first of its kind initiative across the world that joins children with special needs, Rekha is advocating the cause for equal opportunity for children’s education and development. The Children Manifesto at the United Nations talk of a world where ‘Rights were real and not mere promises’. Children with disabilities were entitled to a disability certificate, a safe childhood and a barrier free environment’.

International NGO World Vision has facilitated the movement and supporting the cause of building the network for a stronger voice of the movement in partnership with other Civil Society Organization across the globe. Reni Jacob, Director Advocacy of World Vision says “Children are usually unseen and unheard. The plight of the children increases with gender and disability and a disable girl child is three times more vulnerable towards discrimination.The movement of children with disability is an effort to make themselves seen and their voice heard at the tables where policies are made.”

The story of Chinar Poddar, a seven year old who was given the option of either being detained or leave the school after she could not compete with her “able classmates” in a prominent school of Kolkata is another common instance of discrimination against children with disabilities. The reason cited was that she needed care and additional support to cope to the everyday pressures of the school. Yet her parents argue that had she be given equal opportunity and had the school provided an integrated environment, she would not have been discriminated in this way.

Dr. MehnazWarsi, Director of PremOAsha a local NGO in Kolkata working with the rehabilitation of vulnerable children says”, “The idea is to raise issues that people have been overlooking in the cases of children with disabilities. As per our data more than ninety percent of children with disabilities from middle income group homes drop out of mainstream schools because they cannot cope to pressures and there are very few schools sensitive towards children with disabilities. Trivial issues as availability of toilets, or providing a little support are reasons for discrimination”.

According to National Sample Survey Officer (NSSO) it is reported that 55% of people with disability in India were illiterate whereas the share of children with disability out of school is five and a half time higher than the general rate of drop outs. But the most alarming data shows that only 9% of the disabled people have completed education upto secondary level and above and out of 1000 people with disability only 15-35 have completed any vocational course. About 11% of the children with disability in the age group 5-18 years were enrolled in special schools in urban areas as compared to less than 1% in rural areas.

And this challenge makes Rekha and her campaign all the more important particularly, in a country where children are asking for a gross expenditure of just nine percent of the GDP towards issues of child education and health. Government study shows every seventeen seconds an India child below the age of five dies of simple curable childhood diseases. And those who could live with disabilities havelittle or no options to survive just like Rekha or her counterpart Nisha Das who was borne with deformed limbs. “All your life you live with the sympathy what others show towards you. I want a life of dignity for what I am and not for what I am incapable of.”

Today Rekha and Nisha are living with the cause of the children with special needs said to be the most vulnerable in society.They are advocating and creating awareness for an inclusive child development policy.As the National Convener for NFCD, Rekha is participating in many forums and consultations to raise voice for Children with Disabilities. Rekhaat the UN Conference had said,” “During rainy season I cannot make it to school on time by myself. In such instances I am accused of not abiding by the rules. When I go to hospital I am last in the queue and sometimes I do not get treated. We children with disabilities have rights, when will the world finally understand that?”

Similar were voices from across the globe. A blind Marathon world-record-holder Henry Wanyoike from Kenya reinforced the sentiment: “No one believed in me when I wanted to break world records after becoming blind, sometimes even I myself lost faith. But: “We are very able, when we are given an opportunity! Disability is not Inability…”

Eleven other children from India who happened to be part of the great campaignat the UN stood beside Rekhaconcerned at the indifference of the policy makers towards them. Not all of them where children with disabilities yet together they stood cementing the bridge by being just children or youth, calling for a concrete educational, health and development policy.

In her foresightedness Rekha assures of a very sensitive country. She says, “I dream of my India which is inclusive, an India which is sensitive to the needs and aspirations of special children, an India which will hear and amplify the voices of children and an India which will keep children central in all its policies and decisions”.

Posted on May 16, 2014

--- The Indian Minority