Innocence Robbed

Couple of weeks ago I was talking with Bhawana Bhatta, a very active  Manager of Yuwalaya resource center, which is a NGO and a young and multi talented TV journalist Ashma Aryal. It was a very casual talk in the office of Bhawana. Ashma had been to one shelter home for HIV infected children which is in Kirtipur. Being a journalist Ashma wanted to cover one story on these children and also the dedication and advocacy of the founders. Then she came to know that she can't cover the story in her TV channel about these children. Or even if you take the picture you have to cover the story without showing the picture of them. Suppose you report a story on TV then this means you have to talk about them without showing the picture of children who are living a very discriminated life. Why ? the only answer is, it's international law. You can't tell the story of HIV victim unless the child turns 18 years old. But, the question remains unanswered that why a child has to wait until he/she turns 18 for the mistake he / she never committed ? These children can't go to normal school or can mix with normal children of their age.

What is the mistake of these children ? lack of knowledge about the HIV virus and hyper fear with the virus and this ignorance is with those who are well educated like doctors treating them as well as principals who won't admit them in their schools. Can we  discard this topic as Social stigma ?

Last week, three of us and Yadav Pandit,  career counselor from Yuwalaya went to visit Baby Life home in Kirtipur, Bhatkepati. Bhawana have funded my concept, Books for children and Education project. Under this project she single handedly donated the stationary supply for total of 41 children and some out of course Books for Children in three children homes. We have  visited two children homes and distributed. We still have to visit one more children  home that is in Pepsicola town Planning which shelters the children of prison inmates.

Once we were in children’s home, we sat down to talk with these children and get to know the name, age and part of the county they came in this shelter home.  Majority of the children are from Surkhet, Dang, Dailekh and Pyuthan; areas Bhawana as an active social worker is well aware of.  The youngest one was three year old and the oldest one was fifteen. Out of 23 children, 9 were girls and 14 were boys.

They looked very healthy to me, at least by appearance. Interestingly, its founder duo Mrs. Uma Rai and Mr Rajkumar Pun have taken very good care of children’s mental health as well as physical. The immunity count of some of the children were as low as 200 when they had joined the shelter but, it now has risen to 1700 and more since then, Mrs. Uma Rai one of the founder of the shelter home as well as school for these children shared with us. Some of them have the immunity count which is above the normal healthy person.

Upon infection with human immunodeficiency virus (HIV), a person's immune system kills off nearly all of the virus and infected cells. But some small number remain, and over time, those HIV cells replicate, and replicate, and replicate. Then, usually 10 years after the initial infection, the viral load reaches a critical count, and the virus begins killing off the vital immune cells that protect us against infections.

At that critical count, a person is considered to have acquired immunodeficiency syndrome (AIDS); with the body’s immunological defenses destroyed, it's usually only a matter of months before a range of opportunistic infections and cancers complete their lethal work.

Researchers have developed a number of powerful drugs to help people like Johnson avoid this fate. The key weapon has been a regimen of three or four antiretroviral drugs, collectively known as highly active antiretroviral therapy, or HAART.

She shares her struggle story and takes so much pride in some of success after all the struggle. Like how some of ‘her children’ were in ICU for about a week and how they have survived and how healthy the children are now.

Mr. Dutta Ram Rai Hostel Incharge who has been associated with this home ever since it was established seven years ago, tells me the minimum cost of medicine per child per month comes to a 1000 Rs. Good news is all the medicine supply for these children are free by the government. All of them are the patient of Teku Hospitals. However they also have some sad and bad experience of visiting hospital. Doctors in Teku hospital  hesitates to cut open them if they suffer seriously and needs an immediate operation to save them. They fear they will be infected with HIV/AIDS. Sometimes the doctors in hospital deny to admit sick children even if dying child need to be admitted in ICU. There was case when there have been vacant ICU or bed but doctors have told them bed not available for their children. No wonder, they have moments of emotional meltdown and hut discussion goes with hesitant hospital staffs to provide the immediate service for these children, when one of these child  falls sick and needs immediate hospitalisation.

The children have recently been moved to the new area. Last years earthquake have damaged their old shelter home very badly. They are managing in very narrow tin top temporary sheltor. A concrete building is rising nearby the tintop  shelter which will be used as school as well as shelter for children.

Along with the stationary items Bhawana also had included one school bag for each of them. Then we came to know that these children do not go to school.  Why I asked the Hostel Incharge, Mr Rai. None of the principals in Kirtipur [government as well as private] area would take a single child in their school, fearing other children will be infected by the same disease. It seems we need to target school principals and Doctors and hospital staff first before we target other areas when it comes to awareness about HIV/AIDS and how it will get transmitted. How come a doctor, a school principal, medical staff  and school teacher are not aware enough about this disease to fear them seat next to them ? How can school management deny a child to join school based on the disease child is suffering from ?

How can a doctor deny treatment for a dying child ? should he still be called a doctor if he does so ?

The area they stay are avoided by locals, as if they will be infected if they touch them. It seems that the awareness of the HIV/AIDS has not touched the educated circle of the society so it should not be a big surprise if the average people is not much aware about it. Does knowledge means knowing the children are infected with grave illness but not knowing how to treat them ? What is education anyway ? It seems fear of this disease needs to be cured first among the educated mass before we cure HIV/AIDS.

Good news is Shikchya Sadan the name of the school that provide education to HIV infected children privately. Upto grade eight the school have got the government approval. These children gets regular education in the shelter. This school focus not only in bookish educational knowledge but also takes good care of mental health of the children along with physical. Singing and dancing is basic part of the education in this school. Many of the children are so talented that they have won some national awards in singing competition and writing competition. Children are also encouraged to take very active part in most types of sports.

Each child is aware of their disease and they talk about it instead of hiding it. They appear very normal children. During our visit all the children also told us, what they wanted to be when they grow up. Some wanted to be doctor, some lawyers, some actor, and model and some pilot. Thier dream is so versatile and interesting to hear them talking about the future plan the principals and teacher of the area failed to see beyond the couple of years down.

Long time back I have read so much about HIV/ AIDS because Magic Johnson, the famous basketball player in US has been infected with HIV/ AIDS. When the news hit the headlines in 1991, many presumed he will die soon. He was judged  for his habit and condemned for how it got him. The medicine science has changed a lot over the 25 years and he is still healthy and strong after all these years and he still is in sports industry as an analyst and businessman as well as he is a strong voice and hope for those who are infected with  HIV/ AIDS.

"There is nothing unique about Magic," said Spencer Lieb, senior epidemiologist and HIV/AIDS research coordinator for the Florida Consortium for HIV/AIDS Research. "There are still people alive and kicking and doing very well 20 and 30 years after infection."

It seems our doctors, medical staff, school principals and teachers in kirtipur area do not know a single thing about Magic Johnson otherwise they would have punished those innocent children for not admitting them in hospital or accepting them  in their schools. I really wonder who gives them right to discriminate against the innocent life like this ?

My first job for which I was never paid

It seems very obvious that Children home everywhere would like to run some kind of training programs to keep the pre-teen or teen age children busy when they have young brain and very active life. Such training core intention is to focus on life skill, as well as serve the immediate need of the children home. When I was in school I do remember being  part of the the team that used to make all the dresses that children in Bal Mandir used to wear year round.

I used to attend morning school, which was open from six till eleven. There were two other girls in my class and they too used to join me in running machine over, already cut dresses. There was two guys also in our team, so about six of us used to run machine whole day, six days a week from 11:30 a.m. till 5 p.m.  After about 4 p.m. other girls [ mostly] who were in junior classes used to join us and sometimes maybe we could escape for an hour earlier than the regular time. Needless to mention, it was not a paid job but it was something we have to do it compulsory. It was something that was thought by the people in management a must to discipline us also.

We used to make school dresses two pair for each child in a year, one set of nighty, and I think the main part of this whole sewing section was established was to prepare new dashian dresses for all the children. This dashain dress used to distribute with much fan fair. Dress distribution was a part of one of the big day in the calendar of Bal Mandir. A big Royal entourage  used to visit Bal Mandir during the month of Dashain. This day used to be about a couple of days before Dashain and then one of the royal member  used to hand over a packet of dress to each child individually.

With them the whole team of photographer, reporter, media people and other affluent people of the society used tag along to grace the big room, which we used to call ‘Baithak’, where the distribution of the packet of dress used to take place. Such news used to get coverage in   the newspapers in town. It so happens that then there used to be only two national dailies, one is Gorkhapatra which is in Nepali, and another the english daily, The Rising Nepal. Later on the same news also found space in the Nepal Television as prime time news the only television channel of that time. All the event where royal member presence was needed was regarded prime time news.

Bal Mandir also used to run other training programs not just the sewing section. For those who were least interesting in sewing they used to go to do other training like,  some used to run machines that used to make sweaters, some used to run some home made cloth making machine.  The bed sheet those machine made were thick and considered of lower standards even in Bal Mandir. However I do remember using those inhouse product also for some time.

The most boring part of sewing is creating all identical dresses. Recently, I came to know a bunch of college students who stays in hostel here in town. When I see them going to the market buying the same dress that is different only in colors than the other of her friend she just saw wearing this surprise me. Because this is something unusual or unexpected for me to accept it. I had been seen so much identical dresses in my life and that part of my life made me so much abhor for it. When other like it makes me think hard why they don't abhor it ? is not this a first right of a girl / woman to reject the identical dress ?

Uniforms are uniforms, it has  a reason to be the same for all in color.  Majority of the children used to go to school that is within the Bal Mandir premises.  That school used to provide education until the seventh grade and after that we used to go to another school outside of Bal Mandir.

Once we use to go to outside school we were considered big children. Oh ! I mean to say, when we were in the eighth grade we were considered big children. The average age of the eighth graders is fourteen.

Forget about me not liking the process of making identical dresses, whole day, six days in a week, whole year.  Now, I think those time just robbed us our true childhood. It was not fun to do it, but it was a compulsion to do that. Fine, there were no harsh punishment for not doing it but we were not allowed to spend the same time to read or study other things that we were interested.

I think I must have writing in my earlier post that the training of sewing did no help to anyone who left Bal Mandir. I know no one who later on did it for livelihood or as a job.

Here at this point, I think I should mention this one small part here. Every child in Bal Mandir used to have sponsor. Each sponsor used to send some money to support the cost of that particular child so that the child gets full education during his/her stay in Bal Mandir. That money never used to go to the bank directly. Of course it used to be deposited in bank but only after deducting seventy five percent of it. Because that much money was spent  of  the upkeep of the child. Only 25% of the fund used to be deposited in that child's account.

When I was in Bal Mandir there used to be around 200 child. Our sewing section was never a dry area to work. No doubt, it was always a busiest section of the Bal Mandir. I have run shirt, pant, night gown, skirts, Kurta and all yet I have no interest whatsoever in sewing, stitching, sewing machine and making dresses.  

Today, I do not make a single dress for me if I need one. Because, it was not fun for me to make dress it was a compulsion to do so and I did it even though I did not like it. Instead, I choose a thread to make dress for me I mean a wool thread is much more fun a lot creative  to make sweaters for me. However I have to be honest here. One thing is for sure, I like it or not that is not important. We had lots of time when we were young child and all the training whether we need it for life time or not, that is not important. What is important is utilization of precious time busy mind and that's what may be those adults took when they were in a position to take some decision for us.