Patricia Watson, Senior Staff Reporter
IN LATE November 1999, during the usual rush to get a good story out for World AIDS Day, I met a number of people living with HIV/AIDS. They were at the now closed Jamaica AIDS Support hospice in Kingston. It was not the first time I was going to write on HIV/AIDS issues I had been doing so for months as part of my mandate to cover the health sector. Issues such as the cost of drugs, how much it was costing government to care for people living with HIV, the problem in our prisons that no one would talk about were covered.
I also did a rather interesting one on how much attention the international community was paying to this disease, which, as far as I was concerned then, was the fault of those who had it. After doing this for a while, I finally arranged an interview with one of the persons who mattered most in this epidemic, a young man living with HIV. I distinctly remember turning up at the hospice, an emaciated man knees highly pronounced, eyes pale and sores on his body was sitting on the veranda.
I can still remember that smile he gave, it just never did reach his eyes and he held out his hand. For a split second I wondered, should I take it? My upbringing forced me to take the hand eventually, but only briefly and the encounter left me feeling dirty and apprehensive. I knew I couldn't get HIV by just touching, I actually knew a lot about the disease, after all I had been writing about it for a couple of months, but still, I felt uncomfortable. What if the doctors and literature I consulted are wrong? At the time those were my main concerns. I didn't ask him his name. I didn't stop to chat about the weather, I never told him that despite his illness, I cared even though deep down I did I never spoke to him about his family, sports or life in general. As a matter of fact, I don't even remember the name of the young man I interviewed back then. When I returned to the office, late that afternoon, I went to the ladies' room and had a good wash.
Was I unfeeling? Was I wicked? No, I was not. The fact is, like the general population, I was ignorant and fearful at the time about a disease I thought I knew about. What I came to realise later was that it was o.k. to feel the way I did, what is important though is what you do about it. Do you immerse yourself in this feeling to the extent that you become uncaring? Or do you turn this fear into a positive force through education? I chose the latter. I resolved then I would do my part no matter how small to help to lessen the stigma and discrimination associated with HIV and to try to educate persons about the disease. Breaking the Silence, Dispelling the Myths about HIV/AIDS is the result of this.
It is now one year since Outlook magazine took the unprecedented step to bring to the fore the HIV/AIDS situation in Jamaica through the series and to give voice to persons living with HIV/AIDS. There wasn't much fanfare, but with the blessing and support of the Ministry of Health and non-governmental organisations we began a task which we knew would not be easy. Over the past year, my experiences have shown that ignorance and fear are the major driving forces behind the HIV epidemic. They are at the root of the stigma and discrimination associated with HIV/AIDS in Jamaica.
I've also seen the tremendous pressure that is placed on families, especially women, when someone is positive. And even though I've met so many people living with HIV or those working with people living with HIV, I am still shocked to hear stories of people with the infection being rejected and isolated, forced out of their jobs or homes, refused care by medical personnel and generally stripped of their human rights. That persons already suffering and facing imminent death should be subjected to such indignity is difficult to accept, more so because the disease is not spread through casual contact.
A significant number of those Jamaicans who are affected by or infected with HIV, carry around the secret of the illness alone, wishing they had someone to talk to at nights; wishing that there was someone to hug them and reassure them. And although much research has been done in the area of care, we know through anecdotal evidence that women tend to bear the greater burden in this respect, as care givers and the fact that as a group they are more at risk. So due to the fear that they will be ostracised and treated unkindly by persons who are ignorant about the disease itself, some bear the economic and emotional burden of the disease alone.
Imagine the pain of a 56-year-old woman whose son learnt of his HIV status in the early 1990s. Out of fear of what her family might do and love for him, she kept the fact that her son was positive a secret. She didn't even share this with her husband. She cried alone at nights, she underwent excruciating pains in her chest, numerous headaches; high blood pressure as she bore the burden of the illness and only at her son's death did she reveal what ailed him.
She explained that when he was admitted to hospital for the first time, people who were not staff members at the hospital, whom he didn't know kept coming to peep at him and whispered about him. This made him extremely depressed. As a result, she didn't want anyone to know, he was suffering enough and it would break her heart if her family were to join the ranks of those treating him badly. The incessant fear and ignorance of the disease seem to drive people in the general population to stigmatise and discriminate against persons living with HIV, even their own relatives. People are made to feel less than human, guilty as if they committed some sin greater than the average person. We then rob them of their self esteem, by denying them jobs, forcing them to beg to survive.
The stories you hear can make one depressed and disappointed with persons in general. You can't help but wonder can't they see what you see in these wonderful people? I've found that a significant number of persons who ought to know better are the ones who fan the flames of discrimination, who make it difficult for persons with the infection to survive. Families, including middle-class families, still prefer if the person infected among them, uses separate utensils.
Many people still remain in ignorant bliss about HIV, believing that only promiscuous people get the infection and even though many practise behaviours that put them at risk, they still feel they cannot be infected. But even while these negative thoughts cross your mind, you are quickly uplifted by the fighting spirit exhibited by those infected and affected.
Two individuals stand out among all those I've had the pleasure to meet; one is an adolescent carrying the virus and one an elderly woman who cared for her son until his death. Jadastrongly believes that it was God's will for her to become infected. She explained that the disease has made her a much better person than she was prior to learning of her status and for that she is grateful. The elderly woman, who was referred to as Mrs. McGhee in the article written earlier this year, is a cuddly lady living in the hills of St. Catherine. She knew nothing about HIV, until she came face to face with it in her son. When her son refused to go the doctor, she went to court to have the judge order him to see a doctor. Despite what she heard people say of the disease, she never abandoned her son, but cared for him almost single handled until his death. It wasn't hard, she noted, he was her child, she couldn't allow him to die on the streets.
Persons like these two women give one the hope that one day the stigma and discrimination associated with HIV will be significantly lessened. That families will feel comfortable enough to help to care for relatives who are infected, that employers will not refuse to employ HIV positive persons once they are capable of doing their job. It gives us hope that persons who are practising high risk sexual behaviours will change for the better. They tell us, it is not too late to turn back the tide.
Writing about HIV/AIDS has made me a better person, I believe. I have met so many wonderful people, the courage and tenacity of many have been encouraging. I am still in awe of many of them, one can hardly fathom how they survive in such an unfriendly environment, but they do. All of us can help to reduce the stigma and discrimination associated with HIV. We can go to one of the hospices close by and visit someone living with the disease. Learn as much as you can about the person and the disease. You cannot just sit by and do nothing or you run the risk of causing the deaths of thousands of people. This is most eloquently summed by Martin Luther King who stated that: "We shall have to repent in this generation, not so much for the evil deeds of wicked people, but for the appalling silence of the good people."
