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Listening to People Living with AIDS
August 1999

By: Ronald Colbert, Freelance Journalist
(Adapted by Jan Voordouw, Panos Institute)

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Heartrending testimonies of people living with AIDS were heard during a national forum on HIV/AIDS, which took place from 21-23 April 1999 in Petionville, Haiti.

Seropositive Haitians, Cubans, a seropositive Trinidadian as well as a member of the Network of Dominicans Living With HIV (REDOVIH) related their personal experiences.

On the first day of the forum, testimonies by Esther Bourcicault of Haiti and the Trinidadian Yolanda Simon, both seropositive, held the attention and aroused warm and sustained applause from the participants at the forum.

Refusing each sentiment of pity towards them, Esther Bourcicault and Yolanda Simon both pleaded for a general, effective and active mobilization, to prevent others to become infected.

"People living with AIDS must stand up and speak on their own behalf. I call on you all to bring your efforts together for the welfare of all those who are not yet infected," Esther Bourcicault solemnly declared. She expressed her gratitude for all the statements of solidarity that she has received, but she mentioned also her being offended by the attitude of certain insensitive people "who saw a mean tendency in her public interventions through the media."

Like Esther Bourcicault, Yolanda Simon recalled the suffering she endured before she managed to accept her seropositive condition, which she discovered after leaving university. She received a lot of support from friends and relatives, except from her father. She decided then to identify the causes of the disease and participated in various activities of networks of people infected by the virus. She admitted that the quality of her life has increased by 10 times since she was infected.

"In spite of an environment that will not accept this reality, we are to show solidarity with infected people. They lack proper counseling throughout the region," Yolanda Simon emphasized, considering herself as an element of the statistics that were presented on the first day of the forum.

Cesar Castellano from the Dominican Republic presented the experience of the Dominican Network of People Living With AIDS (REDOVIH), which started in 1997. He highlighted the emotional suffering seropositive people go through, such as loss of the sense of future, of control of their lives, and the problems they face with their social environment.

"Dealing with AIDS involves at the same time prevention, care, as well as taking responsibility of infected people. We must incorporate prevention within treatment programmes, in order not to refer to victims but to persons, not to refer to a problem, but talk about a process which certain people live through, not to consider them as patients but as persons," Castellano suggested. REDOVIH aims to establish support groups everywhere in the country.

By telling about his experience of being seropositive since six years, a Cuban teacher participating in the forum advocated the setting up of leisure and cultural activities for PWAs. He works in an AIDS prevention centre in his country. From his point of view, sex education should start from the early years of life, as it is much more difficult to change behaviour as an adolescent or adult.

Another Cuban participant, a medical doctor/hematologist who was one of the first people tested positive in Cuba in 1979, told that he provides care to many AIDS patients. He is responsible for a thirty minutes radio broadcast which shares thoughts on the issue. He also teaches in a medical school. He wonders why he never had any symptoms during these twenty years.

"Is it a miracle or is it a result of my way of life? I cannot explain it. In spite of the impact on my life that the discovery of my seropositive status had, I strived to work hard and provide help to others. I live a normal life, I eat a lot, " the seropositive Cuban doctor told, who also pointed out that he had only taken, and only during one year (from 1988 to 1989), doses of an injection called "interferon."

There is a striking contrast between these testimonies and the feelings of fear, anguish and helplessness expressed by people when they call the "Blue Phone," a telephone counseling service. This was noticed by nurse Agnès B. Zamor, Manager of this project that is being implemented since April 1998. By profession, she is a nurse specialized in communication.

The motivators and counselors involved in the Blue Phone initiative aim to stimulate interpersonal communication with the people calling by not asking any embarrassing questions. Only very few of the callers reveal their seropositive status.

The principal telephone number of the Blue Phone initiative is "100,"which is relayed by six secondary lines. Since May 1998, counselors recorded some 12,000 calls. Most calls come from young people between 15 - 29 years old. A near-nationwide network has been in existence since April 1999. At present, only Hinche (Central Plateau) and Port-de-Paix (North West) are not covered. The address of the Blue Phone is kept secret, in order to guarantee maximum confidentiality to callers.

Among the needs manifested by people making use of the counseling services of the "Blue Phone" can be mentioned: various matters of subsistence, the search for work as well as assistance in buying medicines. Further, some of the callers exposed cases of sexual violence, suffered by women whose partners are infected. Some infected women whose husbands ignore their seropositive status related also their difficult negotiation to gain employment.

Having proved high commitment, many seropositive persons insisted on continuing to testify about their seropositive status. The forum motivated the organizers and participants to stop talking of "victims" when referring to infected persons, but rather to use the concept of "persons living with AIDS." This gives back a human face to the sick people.

The forum on solidarity with the people infected by the AIDS virus was sponsored by the Ministry of Public Health and Population (MSPP) and organized by Plan Haiti, Promoteurs Objectif Zero SIDA (POZ) and the Panos Institute, an international organization working to strengthen social organizations through the media. The forum also received technical and financial support from UNAIDS and the Policy Project/USAID.

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