Friday 1st December: A promise of stability and assurance
December 1, 2023
Archbishop Rivas’ new book is precious work for synodality
December 1, 2023

A Personal Journey on World AIDS Day 2023

By Lara Pickford-Gordon

December 1 is the UN designated observance of World AIDS Day. The theme for 2023 is LET COMMUNITIES LEAD. It focuses on organisations of communities comprising persons living with HIV and those impacted or at risk who are spearheading progress in the HIV response. According to UNAIDS: “Communities connect people with person-centred public health services, build trust, innovate, monitor implementation of policies and services, and hold providers accountable” (unaids.org).

A young man living with HIV told of his experience living with the virus. He spoke to The Catholic News on condition of anonymity.

James [not his real name] did not know his parents. His first years were spent at the Port of Spain General Hospital with two other babies who were born HIV positive.

“They didn’t have a place for us to go,” he said matter-of-factly.

He said the need to find a place for the babies is when the Society of St Vincent de Paul “intervened” and he began living at the Cyril Ross Nursery, Tunapuna. He was six years old.

It was a time when people saw the Human Immunodeficiency Virus (HIV) as a death sentence. “I think we survived because of basic necessity including love and subsequently because of anti-retroviral therapy, that is how we were able to live longer,” James said.

Family for him constituted the caregivers and other children, “brothers and sisters” also in care.

They were unaware of HIV and just thought the routine check-ups were normal. At eight years, he was informed of his condition. “The language was unfamiliar, the terms were unfamiliar, so we just accepted what they told us. You grew with the understanding that this was the condition, this is what it is and as you grow into adulthood you begin to understand you would be a bit slighted because of little to no information,” James said. The latter comment refers to the ignorance that some people could display.

Getting an education would be difficult because “there was concern about the safety of pupils”. Consequently, his entry into the education system was delayed to 13 years when he got enrolled at the Charis Works Christian Academy.

James laughs recalling school days as “lovely” and “good”. His mantra at this time was “I can achieve anything in life through Christ who strengthens me”.

School was generally a good experience but there were also bad ones. “I used to go around talking of HIV and AIDS. When the school discovered I was going publicly with that, that was a bit of concern, and a girl went around ‘You got AIDS, you got AIDS’.” She subsequently apologised.

James said he was not bullied in school because he could manage himself. “Thank God I had that formidable personality; I could push on.” He was a class prefect but never used his position to penalise anyone. He said this strong personality came from growing up institutionalised.

Before the establishment of the Children’s Authority, children from Cyril Ross got the chance to experience what it is like living with a family on weekends and vacation holidays. These were people interested in showing love to the children.

He explained that these outings allowed them “to see what that environment is about, to see what it is to have children, to see what it is to have a father and to see how to interact with siblings…as well as understanding the fabric of family itself, everybody’s dynamic. I was privileged”.

He was adopted by a family but had the understanding he had to know himself. “Basically, my own shoe of life because nobody can walk in that so from secondary school, I put things in place trying to look for work, got the experience of persons, as well as I was an avid reader which made me understand the world a bit more,” James said.

He learned that life experiences including traumas had to be negotiated. He tells me of research that found that children growing up in institutions had trust issues. He agrees disclosing his difficulty understanding what was true and untrue.

“And perhaps I might have missed certain blessings…To learn myself better I read, and I was taught as well, how to be in a normal home setting, the dos and don’ts, from there I began to pick that up.”

I asked him how being born HIV positive has defined his life. It is a question he has thought about for a long time. “Quite frankly what stood out to me was that in this 21st century, people are somewhat paralysed…”

James elaborated on this statement with an anecdote about someone he is mentoring who shared about their romantic relationship ending after they disclosed they lived at the Cyril Ross Nursery. Research has validated that HIV positive people who stick with their treatment regime can reduce their viral load to undetectable levels. Remaining on treatment can keep the virus suppressed and maintain the health of the individual.

Despite the young man’s assurance of his compliance with medication and doing regular checks, his girlfriend chose to end the relationship. She did an HIV test and has to wait six months to do another.

“There is this idea forming that ‘I may as well go with someone who is the same [HIV positive] as me’ and I said ‘no, don’t think like that’. Persons have been able to live together,” James said.

James understands that there is fear about new relationships, but he always believes that the information on one’s HIV status should be shared “when the time is right”.

This will be contingent on a level of comfort and intimacy in the relationship. “You also have to be comfortable with different perspectives and you yourself would know”, he told me. James added, “Am I seeing the red flags? Not seeing the red flags? What is your family idea, you also have to love yourself”.

He is astounded that “in this 21st century” people would still think of HIV in terms of death and disease. Social media also makes it easy for someone’s status to be publicised for revenge. “It’s like, where is the humanity in all of this?”

There are still tales of discrimination. He knew of a woman who was open about her status and her employment was terminated. She received compensation.

He thinks that more information on the rights of people living with HIV needs to be publicised and people held to account for discrimination. Company policy also must be made known to workers.

Asked what his message would be to the public for the December 1 observance James said: “We should no longer have the idea of the 19th century thinking. We have updated information, read about it, ask questions about it and it is a human being you are dealing with, deal with them with dignity.”