Scorned unto death

Olivia, 31, died from complications associated with HIV/AIDS less than two months ago, following years of grappling with descrimination. But even after death, she was subject to the sting of stigma.

Her mother June Coburne recently sat down with AW to share her first-born daughter’s ordeal and their family’s pain.

“My daughter learnt that she was HIV-positive after the father of one of her three children confessed a couple of weeks before he died in 2007. He had previously told her that he had liver problems and she believed,” said the grieving mother.

She noted that for a long time after her boyfriend’s confession, Olivia lived in denial, refusing to seek medical help although she begged her to. In less than a year, Coburne said her daughter’s weight began to fluctuate and the symptoms of the disease became evident.

“That was when the whispering began and she suddenly became like a movie star in the community, the only difference being that she was not looked on because she was admired but was a target of ridicule. She was afraid of leaving her home as she had became an outcast,” Coburne told AW between sobs.

Olivia’s 12-year-old daughter Natalee easily recalled how she was picked on at school by other children.

“I was always teased about how my mother had AIDS and some of my friends were no longer talking to me as they said I, too, was positive as me and my mother were living in the same household,” the girl said.

According to Coburne, when Olivia finally decided to get help, it was even more difficult for her as she had to travel miles to the nearest health centre and accessing public transportation was hugely problematic. Several drivers refused to transport her while some passengers would not sit close to her out of scorn.

Olivia’s condition worsened as she developed several cancers and was admitted to hospital on a regular basis.

“Except for a few family members, my daughter didn’t get regular visits; most of her friends had disappeared. She became bedridden as time progressed and she would cry as she was very lonely and in a lot of pain,” Coburne revealed.

In July this year, Olivia finally passed away at hospitial. And to this day, Coburne holds a grudge against one of the health-care professionals at the facility.

“I will never forget how the doctor just came up to my daughter and just blatantly told her that she was dying and they could do nothing for her, and walked away. He was heartless. Olivia didn’t respond to him and he asked her if she did not hear him talking to her and she began crying,” she said.

“I really believed that she was stigmatised by the doctor because of her ailment. If she had diabetes, cancer of any other disease that was not sex-related, I think he would have dealt with her in a more humane manner,” added the mother, crying.

But the discrimination did not end with Olivia’s death; securing a church for her funeral service was a challenge.

“Olivia became a Christian after being diagnosed with HIV/AIDS, but she didn’t get a chance to attend church on a regular basis. When the pastor of the church was contacted in relation to her funeral arrangements, he found every excuse in the book why he couldn’t accommodate her remains inside the church,” Coburne said.

“His biggest excuse was that he was migrating for a month and when I enquired if he didn’t have a deputy and if the church would be closed for a month, he fumbled on his words. Even some members of the church were saying that they did not want an ‘AIDS body’ inside their church,” she added.

The mother had to turn to another pastor for assistance and her daughter was finally buried.

Like Olivia, there are other women who bear the burden of living with HIV/AIDS, vulnerable to negative stereotyping due to their illness. And why? There are those who continue to spread inaccurate information about how HIV is transmitted, leading to irrational behaviour from some members of society.

“Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so,” said United Nations (UN) secretary general Ban Ki-moon in a recent posting on AVERT.org.

“It helps make AIDS the silent killer because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world,” he added.

UN volunteer Ainsley Reid has been living with HIV for 18 years and he, too, has felt the sting of stigma.

“Being HIV-positive, I have experienced stigmatisation that is far from mild. It is like being at the heart of abuse,” he told AW.

Reid added that it was stigmatisation that led him to become the co-founder and chief executive officer for the Jamaican Network of People living with HIV/AIDS (JN+).

“There are infected persons today who are still being discriminated against by even doctors and nurses and it should not be like that. I have come in contact with an HIV-positive lady who could be considered as a ‘society person’ who has asked that her prescription and hospital file be written under a fake name as she was afraid of how people would treat her if they found out she was a victim,” he said.

Ried’s JN+ network reaches out to community members and “provides capacity for people living with AIDS to get involved with national responses”. Involvement comes in many forms: donation of medical supplies, HIV/AIDS awareness workshops within communities, and community-care assistance programmes.

In Jamaica, there are several other HIV/AIDS support groups with the major one being Jamaica AIDS Support For Life (JASL). Founded in 1991, JASL is today Jamaica’s oldest and largest AIDS human rights, non-government organisation. JASL offers home-based care, remedial education, testing, individual counselling, skills-building programmes, among other services.