The right to education, a little boy and a stigma 

It was revolting to read on and on in print and social media the reports that flowed in on the child who was deprived of education which is for eradication of illiteracy, due to the death of his father, allegedly due to HIV/AIDS virus. In summary, just to build some context to this article – apparently the villagers of Kuliyapitiya affirms it to be so. As a result the now six year of child is deprived of the right to education, the very right our venerated Constitution and therefore The State have pledged to protect by affording him “equal access to education”. What a tragedy. The boy is now 6+ years. 

We have all seen and heard this story and the story, as it may – keep moving on adding a chapter or two a day, to its sorry existence. Need I repeat newspaper reports? We all know the story. Among many who take up this child’s cause is Mrs. Princy Mangalika, the President of the Lanka Plus NGO formed to help HIV-positive people with the assistance and support of the late Dr. Kamalika Abeyratne. She is also a board member of the Asia Pacific Network of Positive People and currently represents Sri Lanka at many national and international forums, at policy making levels. Apart from that Princey also uses public speaking through media and her experiences as a positive person which is a large step taken towards attempting to reduce the stigma and discrimination that is rife in Sri Lanka. In 2012 UN awarded Princy for her work in HIV. Most recently, she won a further international award for her activism in creating awareness and extending a helping hand, especially to other HIC positive women through the Positive Women’s Network. 

What is so special about Princy and what has she taken up with heavy baton of HIV activism? 

“I was just a housewife and mother. I managed my humble home, took care of my two daughters and a husband I loved very much. How would I know anything about HIV or AIDS?” “My husband was employed in the hotel business. He was offered a job in a foreign land and we were so happy that he could go. He was there for about ten years, but he often visited Sri Lanka to be with family. Obviously when he came, we lived a normal happy family life. Later on, however, his visits became longer and he was not his usual healthy self. He developed a cough and night fevers. Diarrhea was quite frequent. We took him to the General Hospital. Medical checks confirmed that he has contracted the HIV virus” 

“It was the first time that I heard about this. How can I, a house-bound house-wife know what HIV virus is all about? The doctors were all so kind. They quietly explained what it meant and that devastated me. They also told me that I need to take a blood test. I did and was tested positive. My world collapsed around me and I feared for my daughters. Thank God, they were safe as they were born long before my husband went away to work. Although the doctors were so kind and helpful, I did not receive the same kindness and helpfulness that day from others. By noon, the entire ward knew my husband was an AIDS patient. By and by the village I lived in Piliyandala got to know about it, because there was a hospital employee who lived in the same village.” 

“Harassment started when we went home to our village. I had lived in that village for so long and had so many friendships but in our need, we were only stoned, reviled and asked to leave the house immediately. My daughters will be sent back from school because other parents didn’t want their children to be around my daughters. My husband could not take this much longer and one morning, I found him missing. Two weeks later, I go to know he was found but by that time, he was on his last moments. He had taken poison and died a few days later. I had no breadwinner, I didn’t work and I had two school-going daughters and a village rising against us to leave our home. One night I was woken by noises only to know that our house was on fire. I did the only thing left for me to do. Go back to my parents. I am so thankful that they welcomed me and my daughters. My siblings were understanding and kind to us. From there, I started building up my life again”. 

Drawing on her immense strength and deep conviction that HIV/AIDS is no barrier to one’s human rights, Princy has personally intervened to help the six year old find a suitable school. She was thankful to the team that visited the school to educate the villagers on the matter. We all know how it ended. Princy has given herself time to see that the many affirmations she has received from various sources in this little boy gaining admittance to a school comes to fruition. Whether the father was HIV positive or not, is for the medical reports to tell. Even if he was, the child is denied based on fear, a stigma and a self-righteous view the society has adopted in closing school gates in this little boy’s face. What about several thousands of students all around the island? Do schools generally ask for medical reports of all parents as a prerequisite to a child’s admittance to a school? What if, those students come from homes where at least one parent is HIV positive? Who is to know and who is to check? Ignorance is bliss – I suppose. Unfortunately, in this boy’s case a family tragedy, as it seems, turned out to be shouted from the rooftops effectively ejecting his tiny feet from school grounds. 

Parents 

The flip side of the same coin has a large crowd of agitated parents, rejecting, refusing and doing all they can to prevent this boy’s right to education. They seem to think that if this little boy brushes against or sits next to their children in school, that what they think of as his father died, would automatically be transferred to them. What ignorance. Can we blame them – in the interiors of Sri Lanka where the right kind of awareness on the HIV/AIDS syndrome doesn’t seem to have taken root? Parents fear the flu, the common cold, the rash and the chicken pox. With, obviously, limited access to the right kind of medical awareness, one can only expect the kind of rumpus that was created by the rest of the parent body. 

What is the cure for ill-awareness? 

Taking the bull by the horns, Princy has this to say – to contain, if not eradicate the HIV menace. 

“Create awareness at school level. Teenagers are becoming sexually active quite early. We must talk about this in our senior classes in school. Child abuse is on the rise – we must tell our girls and boys how to detect predators and ask for help, immediately. Stay with one partner – fidelity matters and it is not an old fashioned virtue. If you still can’t hold back, wear a condom. Protect yourself and the partner” 

What can the society do to help? 

“Don’t discard and discriminate the HIV positive individual. He has the right to live in dignity as long as he lives. With proper medication, care, dietary conditions and exercise they can enjoy life too. How they contracted the virus is irrelevant. What is relevant is a human being in need. Do extend a helping hand and if you cannot, don’t extend a hand to strike” 

Princy had one last word of admonition to wives. 

“Your husband comes home looking for a pleasant wife. You don’t have to be a beauty queen to please your husband. But you can be pleasant, clean and smelling nice – to greet him when he comes. Remember, he sees well dressed women through the day at his work place and the last thing he wants to come to is a woman dressed in her last night’s clothing and smelling all the smells he wants to avert. When he comes, give him attention – talk pleasantly and don’t take up nagging issues to bed. Hold his attention and love to you – so that he does not stray. That’s the best you can do”. 

Leaving all this rhetoric aside, in a country where a temple, a kovil, a mosque or a church is just walking distance away from one’s home, one wonders where humanity has fled? 

Dr. Mahesh Rajasuriya, Consultant Psychiatrist 

It is widely accepted that personal information of people, especially information of their medical condition, should be treated with utmost confidentiality. That is a very basic way one shows respect for the existence of another person. When the information is related to a controversial medical condition such as a mental illness or HIV/ AIDS, the level of confidentiality should be even higher. 

The recent reports on the boy who was refused admission to a school due to fears of HIV/ AIDS was a test for us, individually as well as the whole society, of respect that we should have for others, especially vulnerable ones. The information related to the identity and the medical condition of the boy, his mother and his deceased father, is to be treated with confidentiality. The confidentiality should not end even after the death of the person. The treating doctors cannot disclose the information, unless under very specific and rare situations such as on the order of a court of law. 

We will be judged, as individuals and as a society, on how we treat this boy and his family. 

By Chandi Perera