Wiping the HIV/AIDS stigma away
I was about eight or nine year old. It was a weekend morning just like any other. I was standing in the kitchen next to my mother as she strained the contents of a pot into a colander, midway in the process of making lunch.
The phone rang; and one of my brothers brought Mummy the white very clunky cordless apparatus of the late 1990s. I had no idea who was on the other line; but it was clear, from the look on my mother’s face, that whoever it was was delivering bad news.
After the call ended, she ran up against the kitchen wall, knees buckling beneath her. After what seemed like a lifetime of attempting to console her, she finally told us the bad news: one of her friends had died from complications associated
I grew up in a house where information was easily shared on a wide range of topics –– not always age-appropriate, but ever accurate. However, I have no recollection of what I had known of the disease prior to that moment.
Nonetheless, in the days and weeks that followed, my knowledge grew. I learned how the disease was contracted, spread and treated, and then came the lessons on stigma and discrimination.
One day, during lunchtime at school, a classmate of mine would report to a group of us the opinion of one of their parents on the death of my mother’s friend. One of the several things the parent said in a wide indictment of the character of someone she did not know was that a diagnosis of HIV/AIDS was punishment for not living a life in keeping with the teachings of God.
I was struck by the differences of opinion between my mother’s and that of the parent of my classmate, and the fact that they both seemed to hold them so passionately.
To say I am my mother’s child is both axiomatic and remarkably true; and so I was enraged and thus went to bat, defending the honour of someone I knew to be kind, articulate, humorous; someone for whom my mother had shed tears.
Time and time again, we hear opinions like these after someone has come to the end of a battle with HIV/AIDS.
We are taught that is in poor taste to speak ill of the dead; but somehow we feel justified in creating distinctions between us and them, perpetuating hate in these instances –– something I find to be the very worst of Barbadian culture. Credible evidence suggests that this hate is not just reserved for those who are no longer with us.
These opinions in part form the basis of the stigma and discrimination people living with the disease are forced to face, impeding their ability to lead full and vibrant lives and have the opportunity to chart their course unencumbered by the narrow, problematic and ultimately hateful views of others.
The stigma and discrimination meted out to people living with HIV/AIDS has implications for us all. Hesitance among individuals to get tested and treated has been in part attributed to negative attitudes towards the treatment of those people living with the disease –– a reality that has the ability to contribute to a wider spread of the virus.
Ironically, that classmate with whom I debated over our mother’s varying opinions is now a medical doctor ––
a feature that reminds me socialization matters, and that the things we teach our children could help or hinder our future effort in areas we could not even begin to imagine.
Needless to say, I trust my former classmate’s position has evolved positively on this topic, given their occupation. Despite my hope, I however appreciate that medical professionals can be the major purveyors of negative attitudes towards those living with the disease, and the institutions in which they work create fertile ground for the perpetuation of stigma and discrimination.
Over the last 30 years, Barbados has kept pace with international developments in the areas of treatment and care and has made its own strides in relation to the near elimination of mother-to-child transmission. The task for us now is to dismantle the stigma that ails a country that could do better by a segment of its population.
In a recent speech Minister of Health John Boyce recognized the importance of the work.
The minister noted that there was still work to be done, and called for swift action to address concerns over HIV care, stigma and discrimination in the island.
“We are well aware that one cannot view HIV as someone else’s problem; the problem belongs to us. Therefore, stigma and discrimination against persons living with HIV and other vulnerable persons is unacceptable if we are to progress in our national response.” For many years the national effort has been defined by a message of non-discrimination, but now is the time for the message to be attached to a structure that fosters accountability and is undergirded by an ethic of care. Now is the time for full ownership.
At a time when issues of non-discrimination and human rights are being hotly debated across the globe, as with so much else, in parenting the power of example cannot be underestimated. We all need to develop an ethic of care in the way we live and interact with each human being, in recognizing that the situations we exist in are a great deal less dichotomous than we believe.
The work of public policy around any issue –– specifically around non-discrimination and HIV/AIDS –– is not confined to boardrooms. First, we must take on the task of engendering in our children the empathy, understanding and progressivism to sit in those rooms; but most of all to exist in a society that is diverse and not without its complexity. Tolerance is ever required from a state’s citizens.
Let’s get down to that work!
(Andwele Boyce is a young communicator who is passionate about politics and popular culture.
He holds a Master’s in international trade.)