Youngsters trying to change the nation's approach to persons living with HIV/AIDS
Nadisha Hunter, Staff Reporter
Kemar Johnsonlearnt that he is HIV-positive when he was nine years old. Five years later, he continues to live in fear that one day the big dark secret will be revealed to a country that he thinks is far from accommodating to persons of his status.
The dark-skin, medium-build young boy clad in his school uniform spoke boldly about his illness to The Sunday Gleaner recently. He had one thing in mind: to change the stigma that Jamaicans attach to persons living with HIV/AIDS.
Kemar said he would have wanted to make his status public, but he is scared because of how people view the disease.
"I am not comfortable with how people react when they hear about HIV. When they hear about other diseases, they seem OK, but when they hear about AIDS, they behave as if they can catch the disease if they touch or look at the person," said Kemar.
Surprisingly, he claimed that he calmly accepted the news of his illness.
"I was watching TV and an advertisement was going on about AIDS and my mother just came over and told me and I never felt any way. I kept focussed because at that age I knew it wasn't the end of the road," he said.
He now spends a lot of his time talking to people about the illness, trying to get a sense of how they would respond if they found out he is infected.
"Sometimes, I will go to my friends or even people in my community and talk to them about the disease and quiz them about what they think about people who are infected, just to know how they would treat me if I told them," said Kemar.
He added, "Some don't seem to have a problem with it, but you can't trust word of mouth. People say things and behave different, so I prefer not to say anything."
not a slave to disease
He said despite being HIV-positive, he remains focussed in life and tries not to allow the disease to affect his lifestyle.
"I cannot go out there and say I have it and I know it is a life and death situation, but I don't take it that seriously because I am not sick and I stick to my medication. So I have the confidence that I will live long enough to realise my dreams," he said.
Kemar, who is a grade-nine student, said he is striving to become a successful hotel owner.
According to the United Nations Children's Fund, it is estimated that 27,000 people in Jamaica are living with HIV. Most HIV infections occur in urban areas. Close to 10 per cent of reported AIDS cases are among children under 18, and 20 per cent among young people aged 20-29 years, indicating that many were most likely infected during their adolescent years.
Shawn Hamilton, 17, whose mother is HIV-infected said, he has taken on a role of advocate for persons who are infected.
"The close person to me has it and it doesn't change anything between us, but I want society to see things the same way too.
"The stigma is very high in society and it is going to take a lot of work to change persons because they are very stubborn when it comes to the disease," he said.
Shawn added, "Jamaica is worse than most countries when it comes to the stigma, but I am not fearful. I want to be part of the change which would make life better for persons infected," he argued.
The two have been part of the psychosocial programme at Eve for Life, an institution that supports women and children living with HIV.
Marjorie Samuels, counselling psychologist at Eve for Life, said most children who are infected are under excessive stress to cope with their status, their family's status and the fear of death.
"Persons at their school will discriminate against HIV, so it gives them that sense of discomfort, a sense of feeling that they are not worthy.
"Persons will talk how they feel about HIV and how they treat people with HIV and so when they internalise all of that, it impacts on their emotions and it makes them uncomfortable; it even affects their learning sometimes," lamented Samuels.
She said the children are oftentimes shunned in their communities with persons saying things like "go away AIDS people" or "AIDS pickney".
"We find that when they go to school, they withdraw themselves from activities within the school setting. It is a problem because when an adult is able to deal with the issue, children find it difficult to put aside the emotions and go on," she added.
Samuels said the group sees situations where parents transfer their children from the schools where they were attending because persons there know of their status.
"Disclosure is a problem and this puts the child at risk … if something happens to the child during school, who is there to take care of the child, because no one knows what is happening?" added Samuels.
more persons want service
She said there is an increase in the number of persons wanting to access the psychosocial services offered by her organisation. These services include workshops and self-discovery training for affected persons to help them to cope with the issue.
The persons are separated into two groups - orphans and vulnerable children for the eight to 17 age group and 'I am alive' for persons aged between 15 and 24.
According to Samuels, not enough is being done to help persons who are living with HIV/AIDS.
She called on the Ministry of Health in collaboration with the Ministry of Education to do more to educate the public in order to break the barriers that exist in society where HIV is concerned.
Samuels said the situation is worrying and needs urgent attention, as children sometimes reach the point where they stop attending schools.
"A parent came here, her son is 18 and stopped attending school from age 15 because he was born with HIV but he doesn't know how to deal with it," she added.
In the meantime, Health Minister Dr Fenton Ferguson said the Cabinet has granted approval for the amendment to the Public Health Order, which will involve adding a section to the order to state that HIV and AIDS should only be designated as communicable diseases for the sole purpose of reporting and surveillance.
"This is very important because it represents a first in terms of amendment to legislation that will deal with stigma and discrimination against persons living with HIV, whether children or adult," he explained.
Ferguson said the objective of the amendment is to ensure that no one is being discriminated against as a result of having HIV/AIDS classified as a notifiable and communicable disease of the Public Health Act.
Names changed on request