Jacquie Burgess:Lifting the veil of ignorance of HIV/AIDS

Founded by Trinidadian-born Glenda Hills with its headquarters in Uniondale, New York, Millennium Sistahs Inc, the TT chapter (MST&T) is a human service organisation with a mission to enhance the lives of mainly women in professional growth, through mentoring services, facilitation of cultural expressions and improved health and well being. Among its many community-building and awareness-raising activities, MST&T produces a children’s carnival band, mounts national health fairs, provides food hampers to those in need, and distributes schoolbooks and school supplies to students as well as the distribution of adult’s and children’s clothing. They have also been engaged in adult education, providing self-enhancement services to women, family life education, and sexuality awareness.

Apart from MST&T’s inaugural AIDS Walk this year, the organisation has coordinated the International AIDS Candlelight Memorial for the past nine years; held on the third Sunday in May, the candlelight memorial is marked in both Tunapuna and Port-of-Spain in homage to persons who have died of AIDS.

President of the TT chapter of Millennium Sistahs and one of the forces behind MST&T’s initiatives, Jacquie Burgess, describes herself as a feminist, activist, social and community worker who has been involved in the Women’s Movement for over 35 years. “Doing work in communities helped me realise the extent to which the ills in society affected families,” she says of what drove her into the sphere of advocacy. “I felt I could have contributed, no matter how small, to ease the plight of some.” She points out that World AIDS Day is just one of the commemorative days within the 16 Days of Activism against gender-based violence (GBV). During this time, all are welcome to pay special attention to the ways in which GBV impacts communities and individuals alike and move forward with solutions in mind. “This year [in commemoration of World AIDS Day], we decided to do the AIDS Walk which was supposed to be a fundraiser but the necessary sponsorship did not materialize. Nonetheless, we thought we should do it anyway,” Jacquie shares of MST&T’s determination to spread awareness of and support for persons living with HIV/AIDS. She adds that the organisation hopes to host the Walk annually.

“The general public [was] invited and encouraged to attend in solidarity with people living with AIDS, caregivers of persons living with AIDS; in demonstration of their awareness of the prevalence of the epidemic and what can be done in the areas of prevention, care, stigma and discrimination,” she says of the initiative’s target.

She believes there is a need for a coordinating body to deal with the epidemic in our country: a body that should comprise of stakeholders from the government, civil society, and the private sector.

She points out that the belief that persons living with HIV/AIDS (PLWHA) can be “integrated” into the folds of society is problematic and suggests they do not belong, which can lead to the violation of human rights.

“We have to be careful of our use of language, eh. For example, persons living with HIV/AIDS could be deprived of employment because of their status, which could result in pauperization leading to the inability to adequately support their household, purchase food and medication including anti-retrovirals and other medications for opportunistic infections,” she gives an example of how discrimination has a trickle-down effect.

About the ills of discrimination that haunt PLWHA, she continues, “These same persons may be hospitalized and the treatment meted out to them by trained healthcare workers leaves much to be desired. Some children are deprived of attending a school of their choice because of their or [family members’] known or perceived status.” Among the most at-risk groups in society, Jacquie says women, particularly young women, are most vulnerable to HIV infection if they lack access to information, education, and the necessary services to ensure sexual and reproductive health. “Gender inequality means that [women’s] capacity to negotiate in the context of sexual activity is severely undermined and compromised; unequal power relations between men and women and genderbased violence put women at a disadvantage and higher susceptibility to contracting HIV,” she describes how women and girls are disproportionately exposed to the disease.

Studies have showed that women between the ages of 15-24 account for the fastest growing number of new HIV infections with global figures standing at 58% and in the Caribbean, 46%. However, while much focus is placed on girls and women who are in their reproductive years, Jacquie says more mature women are not immune.

“This age group sometimes engages in unprotected sex thinking there is no risk of pregnancy while exposing themselves to the risk of HIV and other STIs,” she cautions.

She believes the key areas in which women need special attention are treatment and care, counseling, empowerment (having a voice), dealing with mental illnesses such as depression, loneliness and loss, legal issues, and help with caring for their offspring. While the work of advocacy groups does push for the treatment and wellbeing of all PLWHA, the lived realities of these persons does not escape Jacquie. She reiterates that a larger body comprising of stakeholders from various strata of society is necessary in the push to prevent the spread of HIV/AIDS and offer tangible and necessary support to PLWHA in TT.

“Commemoration of World AIDS Day is an opportunity for people worldwide to show their support and solidarity for people living with HIV. This show of support should not be a one-day affair but all year through,” she says when asked how we can all take the necessary steps to spread awareness and acceptance.

She says the “face” of the disease has changed, given medical advancements, which have allowed PLWHA to live out their natural lives. But while the face of the disease has evolved much of society’s archaic notions surrounding it have not. “With all the information available on HIV/AIDS, there is so much ignorance – on the one hand people do not know the facts about being able to protect themselves and on the other, stigma and discrimination drive the disease underground.

“As a society we have to learn to accept people as they are [and] avoid the temptation to discriminate against people living with HIV/AIDS.” Through activities such as the AIDS Walk and the annual Candlelight Memorial, she hopes MST&T can push forward to helping these words become a reality, for the betterment of both PLWHA and the public at large.

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