Stig­ma­tised and tor­mented HIV pos­i­tive woman fights to keep land and home

Stabroek News Sunday - - SUNDAY MAGAZINE - By Olu­a­toyin Al­leyne

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.

Pos­i­tive women

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

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