Stigmatised and tormented HIV positive woman fights to keep land and home
Three years after Mavis (not her real name) fled the only home she knew in a desperate attempt to escape an abusive partner, a new live-in partner died after a bout of illness and she later found out that she was HIV positive. “Abuse is something I know about. I run from he [her partner] because I went to the court and even get a order but he still jump in me house and I just pack me bags and lef because I know is dead I woulda dead. But then I get with this man and he dead and then I know I get HIV...,” the 56-year-old woman shared with the Sunday Stabroek recently.
The man died in 2011 and since then, Mavis said, she has been fighting the battle of her life to keep the piece of land she owns. She was already forced to relinquish the land and house he owned to his relatives, but she had a piece of land with a small house just next door.
“But they want this tuh; somebody at the back done tek up the farm land and he [her late partner’s brother] now want me land tuh always telling people is fuh sale. I tell you I run all over. I run to the police plenty time I even went to Lands and Survey but I ain’t get no help,” the tormented woman said.
The woman, who does not have children and does not “burden” her relatives with her problems, believes that her positive status is contributing to the daily torment she faces from her neighbours and other residents in the community.
“First is he family cussing me and telling me I give he HIV and now you have to hear people telling that you gat HIV and why I don’t just dead. Is like they wishing fuh me tuh dead.
“Sometimes I just want to give up you know but then I would say no I wouldn’t leh them mek me kill me self’,” the woman said almost in tears.
Finding out that she was HIV positive was just confirmation of what she had already suspected and Mavis said she resolved that she would continue to live and has been on treatment for six years. It is almost the same amount of years she has been enduring torment with persons trying to evict her, while others stigmatise and discriminate against her because of her positive status.
Mavis works as a security guard strictly at nights and according to her she disclosed her status when filling up the medical form but so far she has not received any negative reaction from her employer.
“Sometimes to be honest, I don’t feel like going home when the day come. The last time me neighbour at the back cut down a tree and it fall into the back of me house and damage it, damage me bathroom and me toilet. I report it but nothing ain’t come out of it. Now I does bathe at me work site or I have to wait till late to bathe just outside,” Mavis lamented.
Mavis’s experience is similar to what many HIV positive women endure and many of them are also victims of domestic violence according to Head of the Guyana Community of Positive Women and Girls (GCWAG) Marlyn Cameron, who is also the country coordinator for the International Community of Women Living with HIV (ICW), of which the local arm is a part.
Cameron told stories of women being neglected by their own children because of their positive status. One woman, she said, was forced to live underneath her relative’s home, using bags as a wall, while she and her children being forced to sleep on the mud floor.
“There was another case with a woman being locked in a room by her children and them passing the food for her underneath the door and they only let her out when they want for her to bathe and she was like that till she died,” Cameron said.
“For positive women, housing is a problem. Their families sometimes put them out and their children. And so we believe that if low-income homes can be provided for these women it will improve the quality of their lives and then they would be able to focus more on their health and their children instead of just trying to survive,” she said.
The ICW, the only international network by and for women living with HIV, works in 120 countries with the aim to build a vibrant movement of powerful and informed women living with the virus who recognise and claim their rights at a personal and societal level.
The local arm of the organization, according to Cameron, who is also President of the Campbellville Support Group, was formed in 2015 through the leadership of Crystal Albert; she joined the group in 2016. As of July of this year GCWAG, which is also an arm of the Network of Guyanese Living with HIV/AIDS (GPLUS), had over 90 members.
She told the Sunday Stabroek that on the 25th of each month the organisation advocates for the end of domestic violence since violence is a cause and effect of HIV. She said because of their positive status many of the women feel that the violence is justified and also because of the prospects of them being single parents they remain in the relationship as a means of providing for their children.
IThe positive women group aims to assist women to access family planning and Prevention of Mother to Child Transmission services, provide peer support for understanding and adherence to treatment regimens, advocacy around partner abuse, promote self-esteem among women and girls and promote and encourage small business development among others.
“Stigma and discrimination, acceptance of family are some of the burning issues faced by positive women. Lack of education about the virus is also an issue,” Cameron said, adding that she believes education on HIV/AIDS should start in the primary school system. mportantly, Cameron pointed out that there are young people who are born with the virus and are on medication but their parents and guardians do not reveal their status. They find out by accident by maybe seeing an advertisement on television and recognizing the tablet they drink. Finding out in this manner makes them angry and bitter and many do not accept their status and as such would not reveal it to their unsuspecting sexual partners. Should the education process start younger, then children may learn more and will ask questions which their parents and guardians will be forced to answer.
Cameron said it is time for families to start supporting each other as if positive people receive family and community support the virus would not spread so rampantly.
“The virus is still being spread rapidly especially among the youths,” she cautioned.
In an effort to provide support the positive women group recently trained 26 women in art therapy at the Burrowes School of Art and it is hoped that these women on their return to their community will assist others to manage their stress and deal with difficult circumstances.
On the point of positive persons being hesitant to disclose their positive status, Cameron said that it is not disclosing one’s status but rather dealing with the issues of HIV.
“When persons disclose their status, unfortunately Guyana’s society is not ready for this and strongest among them are stigamatised and it can impact their progress,” she noted.
“I would love where everybody can be in society living positively, and be comfortable to say I am positive without facing any stigmatization, but we are far from there.”
On an unfortunate note, Cameron said, there are instances where positive persons “out other positive persons” by revealing their status and she called on all to
strongest among them will have those days when it seems like all is lost.
‘Constant mental stress’
Mavis admits that while she resolves to live she finds herself in a “constant mental stress and I don’t want to go on.”
She wishes that someone in authority can assist her and ensure at minimum she is allowed to occupy her land and home peacefully. She has no electricity or running water but these are issues she can live with, she just wants the “constant fight for wah is me own to stop.”
“Is all kinds of things, you have people coming in front me house and smoking marijuana and parking in front and a whole set a noise, leaning on me fence and when I talk to them they tell me is the road. And sometimes I get cuss and they telling me how I HIV and sometimes to tell you the truth I does buse back because it does get overbearing.
“They want me to leave the place, they already tek me backyard but I not leaving, I climbing every mountain and swimming every river, I not backing down.”
On another note Mavis said after she was placed on treatment she realized her now dead partner knew of his status as she found dozens of the medication underneath their home but she only recognised what they were when she was placed on treatment.
Mavis remains on the treatment even though sometimes “it does be hard because it does be bitter and you feel bad, sometimes I just feel so sick that I can’t even get out me bed. But I still trying and I can’t stop work because I can’t live on public assistance. I does try and eat as healthy as I can but it does be hard.”
She said being a part of the GCWAG has helped her but she is unable to contribute as much as she could because of the mental stress. “I just need some help,” she pleaded. Persons interested in learning more about GCWAG can call 691-7297 or email firstname.lastname@example.org.